The life and times of a green phoenix....

Moving on!

2011-03-10T01:03:00.004Z

Hey!! My blog has developed!!! Ali Hayward's blog, 'The Life and Times of a Green Phoenix' had its last post today!

For my new blog Ali Hayward - the blog, click the link below:

http://alihaywardtheblog.blogspot.com/

Looking forward to seeing you there! (And when you get there, don't forget to click follow or bookmark me!)

March march and cuts.

2011-03-09T23:01:00.009Z

The future is terrifying for disabled people. At times I think, it can't possibly be 'that' bad, but when I wake up, it's not a nightmare. It's real. This is what the Government is doing to our lives today, tomorrow - NOW. How are we supposed to live with the butchered mess of threats and reality of what they're doing? And it's oh so easy for them to do it. I listen and hear people who were once left wing, or even socialists before New Labour time, trying to justify, or rationalise these cuts away.

Disability is not a life choice. Being born with, or acquiring disabilities that impede on your ability to take part in society because of how society is organised, is not fun. Other people's projection and judgment of our potential and right to be part of some parts of society is not fun either. Of course we were always equal, yet for so long we've had to even fight about that. We're never been the same but we are equal.

My disability benefits mean I can live modestly, independently, in a society which I always believed wanted full integration of all people, in order for rich and vibrant communities to develop and grow. Now we're highlighted almost as criminals, who are unworthy and somehow have far too much of the high life for our own good. This of course is nonsense, but such ideas are one of the unsaid messages that come from the Government when they declare the reforming (cutting) of disability benefits.

The impact of such negativity on disabled people is yet to be documented, but I assume rates of disability hate crime will increase and disabled people will be come more of a target, for any political group to point the finger at. As for disabled people themselves, we're all different. Some of us may fight, loud and proud, some may want or have no choice but to stay in the background. And some will do both, dependent perhaps on their impairment, energy levels, support, and /or the ability to face yet another fight where we have to prove we're human to faceless beaureacrats, who believe that taking away, for example, the mobility component of DLA, is an OK thing to do for disabled people living in residential care. How does one begin to communicate with such people!

In the election it was the BNP that stated in their manifesto that disabled children would be taken out of mainstream schools and placed back in special schools, on the grounds that a) they would receive appropriate care, and b) the non disabled kids wouldn't have to suffer the lowering of their education standards any longer.

When I hear what the Government spews forth about disability, it sounds remarkably similar to the fascist arguements of the BNP. Unfortunately, in addition, it doesn't seem so far away from the German propoganda of the Useless Eaters of the 1930s too.

I am scared for us, obviously for myself and my disabled daughter. But my fear is larger than that. Disability has always been so individulised by the very nature of how society organises it. For us to come together and march is far more complex and demanding than any other group I can think of. There are many for who it's asking too much, in terms of pain management, dealing with fear, anxiety or panic attacks, coping with strict medication routines, to name but a few. For some, the lack of adult changing facilities or adequate places for tube feeds, means any outing becomes a major expedition, and the list goes on.

Personally, and feel free to call me a coward, I'm too scared of the mammouth crowds, not being able to see anything above the waist or chest of those in front of me, and being trapped and stampeded upon, or being dragged out of my wheelchair by some over zealous police officer. So I'm not going on the March march, or any other. I'm too vulnerable physically and couldn't do a damn thing to defend myself. I'm also too vulnerble from my mental health point of view too. My anxiety levels would shoot through the roof, just as much as my feeling safe levels would plummet to the sewers. It would feel chaotic and dangerous, and I'd likely have full blown panic attacks - which really wouldn't help anyone. So I feel grateful to all those non disabled people, who can go with ease and indebted to the disabled people who can go, like I used to be able to in the 80s when I was younger and my disability felt easier to deal with. Fight loud and strong. Enjoy.

However, I'm not doing nothing. I've decided to make sure that I let Downing Street know that I, and thousands of other disabled people, would have been there, but... They're not going to get away with thinking that we're unorganised, complacent, lazy, or don't give a damn. The message couldn't be any clearer to them, these cuts are just plain, short sighted and wrong. No humane society treats one of their most vulnerable, or perhaps the most vulnerable, group in such a way. There's no way we're going to be stripped of our selves, becoming non persons and left for the circling vultures to swoop and feed upon. I may not be going to the march, but my fight against this government is just as great as if I were there. Viva le revolution!

This Uni stuff.

2011-01-19T04:52:00.000Z

I'm a mum first - there is no other choice for now. That's why I stay up until 4.30am or later, reading, revising or working on Uni stuff. So I could drop out, or give up. But then I'm a woman too. Uni is a process and not an event! As I go through it I begin to realise there is so much potential to reach for or grasp. If I didn't try, or didn't get Uni brain saturation, then I would be an unfulfilled woman and no doubt a pretty crap Mum.

I'm bound to have a major wobble now and again, like today - at times this Uni stuff is so hard to get your head round, it's scary and overwhelming. Being an undergrad in your 40's with kids, cats, rabbits and baggage is a bit like being an artist painting a picture with many of the colours needed missing..... the main one being 'time' - yet it's also an opportunity to mix what colours you do have and to maybe make some brand new colours. Or so I keep telling myself! ;-)

Christmas pressies

2010-12-10T07:20:00.000Z

Hiya,

If you get this email it's because I love you!! (read on it's not that corny honest!)

I'm not mean. I'm not selfish. I'm just getting by. I can't afford to buy presents for everyone without getting into debt. I can't afford to get into debt. So this year I'm concentrating on the kids. So please don't buy me a pressie, and should you wish to buy the kids something how about something small.

I'd much rather we spent some time together and ate mince pies, played board (bored!) games, go for a walk, cook a meal together, had a good natter, etc etc.

Please don't be offended by my email. I'm just realising how much stress money and Christmas has been making me feel and I'm really not good at coping with this kind of stress. Like everyone else I can't live beyond my means.

So please relax in knowing that you are important to me and I'm glad you're in my life - I just don't believe me getting into debt to buy you a pressie means I somehow love you more! I really look forward to seeing you over Christmas and the New Year.

Much love

Ali

Christmas hype moan

2010-11-22T02:50:00.004Z

We went into to town this afternoon and unbeknown to me it was the Christmas light switching on ceremony. This was the exact opposite of what I was hoping for as it was noisy, packed with people, fair ground rides and food stalls. I had 80p in my purse! I had been hoping to find a quiet place to film an interview but even several hundred yards away from the happenings, the din, especially the buzz from the bass, intruded to ensure there wasn't anywhere quiet enough.

Then this evening, yet again I noticed how many ads there are on TV and on the internet for Christmas. They've been there for a while and I still find them so incredibly unnecessary and I'm cross that my kids see them and believe that they should receive so many high value pressies I just can't possibly afford.

There must be thousands and thousands of parents like me who are feeling pressurised by their kids to buy unaffordable presents by buying on cards, or mail order. I'm just not prepared to go in to debt for Christmas - where's the enjoyment in that?

I am pissed off that my kids are taken in by clever advertising and somehow believe that their lives will be better, cooler, smarter by owning the latest whatever. I'm equally pissed off that I'm feeling the pressure of it all, or rather allowing the pressure to get to me. And yet I can't bear the idea of disappointed faces on Christmas morning.

I've told them both that Christmas will be a scaled down affair. But we're still doing treat and fun things. On Christmas eve we're going to the pantomine. On Christmas Day we have lunch with my parents at a local hotel. On Boxing Day I'm hoping to take them to a carvery they both like. So at least the meals are sorted and whether I have a PA/carer or not, I'm not going to be exhausted preparing food and washing up!

Then they'll be loads of TV to watch. I might check out getting the movie channels for over the holidays. ANd we love playng Monopoly and those kind of games too. So I need to make sure we have loads of things to do that include them both but are free or cheap.

I'm not ashamed to try to live within my budget, but I know it's hard, especially when there is so much pressure to be this somehow perfect family, who have absolutely everythng, and want for nothing.

In absolute truth we want for nothing. We have a dry home with heating, food in our cupboards and fridge, season appropriate clothes. None of it's luxury but we have it and more. Yet the adverts tell us that to be the perfect, happy, healthy family we need 'stuff.' It's the 'stuff' that's the excess and not necessary. It's those things I don't want our Christmas to be focussed on. We may never be wealthy nor a perfect family but happiness and contentment come from within, and all the toys and gadgets in the world can never give us any of that.

Wet paint and cheap cord carpet.

2010-11-12T01:41:00.002Z

TeenBoo has got a flat!! He was offered it from a social housing landlord earlier in the week and signed the papers a couple of days ago. It is a top floor flat (no lift) and has just had a new kitchen and bathroom fitted. Obviously I can't get to see it, but that's OK. He's already made a film of it for me.

He's been decorating it with friends today and went with his Grandpa to choose some cheap cord carpet. We persuaded him to have the whole place done in a tough new carpet that looked good, and then as things move on, he can change it if he wants to. It sounds like it's going to look good. He's chosen a blue colour for the floor and cream for the walls.

I've promised to buy him a sofa bed from Ikea (Thank God for the Ikea card!) and I'll hopefully get him some curtains or blinds too. No doubt they'll be other things! I've been collecting a few things for him over the last year too. For example, kettle, iron, slow cooker, sandwich toaster, duvet, bedding, etc etc.

I am pleased for him and he sounds excited about life. But I can't help thinking about how young he is. At least he's got somewhere safe to live and isn't going to be on the street, which would have upped the anti in terms of his experience of homelessness. Ironically, he's actually had one of the better experiences of being homeless. Yes there have been rough times, but at least no sleeping rough.

Hopefully the days and months ahead will help him move on from his homeless year to his new becoming settled life. Hopefully in the fullness of time, he and I will grow into a more healthy and happy relationship too.

Better Days.

2010-11-07T01:59:00.003Z

The last few days have been a huge improvement compared to earlier in the week when things looked and felt bleak.

Depression is so insidious. It creeps in, on, under and round me before I realise it's taken an active hold again.

Thank goodness bad days don't seem to stay for weeks and months like they used to. Ironically, a positive of a bad day/s is the reminder of how bad things were and how generally, things are better.

Onwards...

Hard day, sad day.

2010-11-01T23:46:00.004Z

Today I've cried a lot. It wasn't my intention, just haven't felt strong today.

Me and LittleBoo are both on antibiotics with ear infections. Hers in one ear, mine in both. We're both in pain and understandably not enjoying it.

Don't listen/watch the news much but today just listening to more Con Dem propaganda made me cry and feel utterly helpless to be able to change things. I honestly believe they have no idea of the harm they're doing. They really believe it's for the good. It just shows they don't have any idea about real people and what a struggle life is for so many - due to become an even harder, less tolerable struggle. I think it's beyond wicked. The country is turning so far to the right (as are some other European countries) there has to concern as to the Govt's future path and how it will affect the more vulnerable members of society.

TeenBoo is literally homeless today. I won't say much here other than we're talking about a very complex situation - so I'd prefer no judgmental emails. Dynamics are hard, life is complex and not straight forward. But maybe you can imagine how much my heart is broken? (I'm sure his is as well.) It has been very raw today.

Next is silly, organised my hair appointment online over the weekend for today, well I thought for today. It takes three hours altogether and I love having it done. In all the physical and emotional chaos of phone calls, manipulations, etc, today, it was my calm in a storm. My hairdresser is wonderful. An amazing gay man who has a doctorate in very important physics stuff and is into diversity, both in theory, but especially in practice, as much as me. I LOVE him running his fingers through my hair - so absolutely not sexual - just very lovely. And we have great conversations, none about holidays.

Anyhow I'd fucked up. My appt is for next Monday! How did I do that? He wasn't there. And he can't fit me in before then, as it takes about three hours (lots of running his fingers through my hair!) and there isn't a three hour slot that works with LittleBoo's care plan before then.

Went to the Info Commons and really wish they had an area just for mature students. They don't but I might suggest it. It sounds very separatist of me, but sometimes it is totally overwhelming being surrounded by hundreds of 18 - 21 year olds. It felt that way today.

I might also suggest an area for disabled adult personal care/changing. Took LittleBoo in the other day as I needed library books. Turned out she needed to be changed. There was nowhere, only the disabled toilets, which aren't roomy enough. What are they going to do when a disabled student needs this kind of facility? After all incontinence is not a reflection on intelligence. I think I'll write to the Vice Chancellor about this. It should exist in both this building and the Student's Union at the very least. Have to say I have little hope for success. It's considered so radical. How ridiculous. No wonder there aren't more severely disabled people visible in higher education.

Anyhow, strangely for me, I really didn't enjoy my time studying today. More private tears in front of the PC, pretending to read. Hopefully nobody noticed.

Met LittleBoo and carer in IC car park. I was greeted with the news Mrs L is leaving as she's got a new job at Hillsborough! Mrs L is Littleboo's head teacher. More tears. It's hard to explain, but I leave my daughter, who has v complex needs, in her care everyday. This woman has an excellent understanding of disability. I'm rarely concerned about LittleBoo, as under Mrs L, the staff are wonderful, and although they don't all understand a radical approach to disability, she gently distills her wisdom, without threatening anyone and they take it on board because after all diversity is just commonsense. This seems to me to represent society at it's best intended. But what will happen now? Her deputy will hopefully get the job. He's fab too and singled out in their Ofstead report for being a v important and positive energy within the school, which I would also agree with. I hope he gets it and isn't head hunted over to the new school. (They work so well together.)

Then there were various phone calls regarding TeenBoo. More tears.

Tea with LittleBoo in cafe (otherwise wouldn't have seen her today). Then over to class, 45 min early as she goes to Brownies with carer.

Sat at the desk alone reading, more tears. Composed myself and had a few more tears v.quietly and hopefully privately during the fucking class! I felt a fool. Something triggered it, I couldn't help it. I've NEVER done that before. Hope I never do it again either. Seems like nobody noticed, thank goodness.

Then got a text message from mate about being in my Uni film assignment. He's got a v busy lifestyle (like me, but for different reasons)and I realised the time he had available wasn't going to fit with what I'd planned to do. Oh fuck!!!! Or as the first line in Four weddings and Funeral says, 'Fuck, fuck, fuck, fuck!' Never mind, it happens. Things rarely turn out as planned. Guess what???!!! More tears.

What a day! I've been feeling so wobbly and PMTish. V low, worried, concerned, sad. I'm sure it's not the worse day going, they'll be plenty of others who've had worse. But it's a descriptive of how my depression can hit, unexpectedly. Feeling so low is frightening. I just wanted to drive off and never be found. I can never do that.

Disability is always individual and isolating. It's always hard to reach out when feeling like this. For years I thought I'd try and write down what such days are like. But I never managed. So I've succeeded in something today at least. And TeenBoo is sleeping at a friends tonight - thank goodness.

More than halfway through.

2010-10-29T23:34:00.003Z

More than halfway through it all and almost halfway through the first semester of year four. Time moves. I feel totally different to how I felt before. I'm more at ease with learning. I'm wanting to learn loads. There's always another 'why?' or 'how?'

Strangely I find the more I think I know and the more it permeates my life, I'm left with a ripple of discord, that on occasion surges into a torrent, where who I think I am, or where I am, is put to question again and again. It's unsettling, but I see it as a process. I'm kind of caught between two worlds. I'm not sure if it's a choice or not or how I got here, the realisation happened after the transition started! I'm guessing there are loads of students go through this kind of thing. They'll no doubt be theories and counter theories to explain it away. But it is strange and rather exciting at the sametime and I'm wondering where it'll take me.

So even though the ground seems a little unsettled and challenging now, Uni is where I belong. No where is perfect but my consistent experience of Uni life and interaction with those there, is that I'm welcomed, equal and have just as much right to be there, to fail or succeed as anyone else. Of course I want to succeed, but it's the experience of being saturated in learning, both taught and self taught, that provides the evolution of real value, regardless of success.

Yet sometimes it feels like I'm only paddling! I have no choice but to balance being a mother to two children with their own particular needs and demands, and my studying. I want to do both things well - really well, yet my motivation and energy levels make it implausible. I have to be mum, run the house, run the PA/carer company, be a manager to the PAs/carers, ensure my kids needs are met, take LittleBoo to her medical appointments, go to my own medical appointments, support TeenBoo with his needs, look after the ridiculous number of lovely animals we have and somewhere in there, somehow try and find a little bit of time for me to 'just be.' At times it's laughable. I try hard to keep up with friends but we all lead such hectic and full on lives - it's often impossible.

At the same time I'm making new friends at Uni and wanting to spend time with those who share similar ideas and values to mine. And that's quite hard because although I'm excited and extremely happy to meet new people, I'm often nearly running on empty from everything else and feel I sometimes may find it hard to give enough.

I often wish I were younger! I feel like I'm only just beginning my life and yet I'm 46! Like most everyone, I feel young but as my mother kindly reminded me, I'm middle aged! I never thought they'd be so much welcome destruction and construction going on for me. Fundamentally I'm obviously still me, yet even at this stage, only half way through my under graduate Uni experience, I've already changed, grown, and developed in to a revised more confident and thinking me. Ironically before Uni I was often accused of thinking far too much and too deeply about things - and it wasn't a compliment! Now I feel I'm in place to develop my thinking further, which I'm sure will mean I become more comfortable within myself, and of course inevitably, with myself. It's all good.

This one's for you, Oli.

2010-10-04T01:35:00.004Z

Oli, this one's for you. It's been long in the making and is full of depth and hidden meaning. It looks simple, but of course is complex in the crafting. You told me you keep checking my blog - not as a stalker, of course ;-) - so it made me think this would be the perfect place for it. So my friend, this one's for you....

'Olster,

Bolster!

Alster.'

Looks like we'll be moving - in a year or so!!!

2010-07-09T16:18:00.003Z

Oh man, I am feeling quite excited!

I've found living on this huge social housing estate quite hard at times. There are allegedly drug dealers a few doors up, many people with obvious issues, for example, alcoholics literally rolling about on the pavement (yes honestly, I've seen two this week alone), and I was approached by a 'crack head' last weekend in broad daylight, to go to his house and see his 'puppies and kittens.' I think he thought I had severe learning disabilites as well as physical - but scary when you think how gullible LittleBoo or other kids are.

I've had my hanging baskets strewn over my front garden, my outside light pulled off the wall three times (don't bother with it now), people telling me to 'fuck off' when I asked if they'd just help me get to my front door in the ice, people who are considered 'questionable' by neighbours who tell me there are paedophiles, murderers just rehoused opposite or nearby, etc etc, and the list goes on.

So apart from all this, and having no friends here at all (although I'm always pleasant to those I see), it's been great living here. *giggle*

I need to be near people more like me. It's so far out here, people don't pop in and it is socially isolating, which isn't good for people like me who can feel depressed quite easily, even on anti deps.

ANYHOW, there have been these bungalows I've been keeping an eye on in an area I would love to live in. I went to check them out again this week. There are only three of them. As we got there the man from the top one was coming out and I went to speak to him. I asked him that if he ever considered moving if he'd contact me. He said he WAS considering moving in about a year, as he and his partner/wife wanted another baby and a bigger house with a garden!!!!!!

He was well cool and let me see the garden (actually yard/patio thing, but absolutely fine), then asked me to take a quick look downstairs, as his baby was asleep upstairs. It is perfect for me. It needs a new kitchen eventually and a coat of paint here and there, but that wouldn't stop me buying it or make it unable to be lived in.

There is also room to expand and I could convert the already pitched roof carport into a kitchen and join it on to a new lounge,(the existing ground floor bathroom and bedroom) making an open living area, so much easier for a wheelchair user. Then the rooms that were the kitchen and lounge could be made into my bedroom and wet room. Of course that would be for the future - but worth thinking about and noting as a possibility.

In the dormer part of the bungalow, reached by a small stair case, there is a bedroom, a dressing room and another bathroom. I didn't see this area as the baby was asleep and they don't have a stair lift, which I'd have to get put in. But LittleBoo could have this space for all her toys and things and as she grew older, it would allow her the privacy and independence she would need. She loves the idea and I do too as it will allow me more privacy too.

The bungalow man said I had first refusal on it! Can you imagine that!! He's got my details and will says he will keep in contact.

So here I am. It's a waiting game. But I have time to decorate, have sort outs, and all the things people do to prepare their homes for selling. I have GOT to get this bungalow or something better in an area that would be good for me. I need to live somewhere different, it's important. My current area is very negative, although I try hard to put a positive spin on living here, as I never thought it would be possible to move.

Already my mood feels lighter. I rarely talk about my depression - it's one of my coping strategies and people understandably get bored, put off, or whatever, hearing someone's continual woes. Only a few days ago I was feeling terribly low and finding life rather a struggle. I'm not stupid enough to think this bungalow is the answer to all that. However, I know housing places a significant part in people's emotional health.

So on with the decorating, sorting out, thinking about finances and generally getting prepared to 'go' with it all when he says he's ready. I've checked with LittleBoo's school and she can still go there. It's an 11 mile return journey now and I would think quite similar from the new area, so that's cool as too many changes could be difficult for her.

Yesterday I had lunch with a friend who said she's always around the new area and would find it really easy to pop in for a coffee compared to where I am here. In fact her exact words were that she'd pop in all the time. It will do me so much good to be around so many more people I know, and hopefully people I'd get to know.

So if anyone I know reading this wants to help with painting, or other jobs, just get in touch. I'd appreciate it. Isn't it exciting!?

The future

2010-06-28T23:31:00.002Z

It's funny how things change. I was just rereading a post I wrote in 2008 where I was 7 months into a 'new' relationship.

As these things have the habit of doing, it seemed like the perfect relationship then. He was Polyamourous, so was I - although I called it something like 'having an open relationships'. We had so much in common and to be able to communicate the way we did was a huge relief to me. I need to have a man (or woman) I can really talk with, who challenges me, yet hears when they listen and encourages me to be me, rather than wanting me to become a shadow of them.

All was good. I got on with his primary partner well.In essence the first 18 months were great. We had many lovely times. He was and remains a kind person. Then our relationship started to change.

I don't really understand how these things happen. I didn't notice the changes and was generally very happy. It's the kind of situation where things are happening and it's not until later the picture begins to make sense.

So we were going in opposite directions. He, I now understand, saw Poly as meaning having sexual experiences with any other women, poly or not, whenever, where ever. I on the other hand was looking at a different kind of poly, completely polarised to his view, where commitment, respect and honesty were the cornerstone to relationships.

For me this meant I had to end our relationship, which I did a few weeks ago. We both felt it would be good to remain friends and have done so, thus far.

I saw him for the first time since it ended a few days ago. It was really strange. LittleBoo was extremely pleased to see him and they spent a lot of time together, which was lovely. He kissed me and we hugged and he said how happy he was. Yet I felt very little.

So what happened? I just knew it was over and I couldn't be the kind of friend I have tried to be since the split. To change to being platonic friends is just not possible now, nor is anything else. I'm too angry and frustrated with his continual behaviour and focus/priority with sex. He has often claimed our relationship meant something of importance to him, but there is very little previous evidence of that.

Suffice to say the Aliboo has moved on. I tend to be quite slow at realising these things and then see it clearly. I spent time talking to his primary partner and explaining why I'd finished the relationship. It was good to talk and again recognise what a lovely woman she is.

So that's it, time to regroup and move on. It's good - for both of us.

Utter creative limitlessness!

2010-06-04T01:29:00.014Z

Uni is all encompassing, taking over not only actual time but also my mind as thoughts and ideas dash around and I begin to either build upon, store or dismiss them as appropriate.

This never ending process is exhilarating most of the time as it confirms life in its splendor and is only contained by conscious choice or the lack of ability to think further, harder, differently, effectively, or just more.

So tonight I still have two assignments waiting to be written. I am working on them. I have been working hard on them (in between writing poetry which for some damn reason won't take a low profile at the back of my mind for a couple of weeks...it keeps seeping out!) but then after a few hours I realise my thoughts have turned creative again!

So I start thinking film topic. Next semester I have to make a short film (again) but from what I understand this time kind of marrying two, or perhaps more, forms of creative media or art.

So I'm messing about thinking about this idea. It needs to be simple yet thorough. Challenging with levels of 'moving on' comfort zones. Abstract but not offending the viewers integrity... and so it goes on.

As I began mulling over these thoughts a little more I realised my ideas needed to be something that was a journey for me too. Maybe a theme or issue that I would begin to understand differently, and/or maybe even develop more and grow as a person too. If I wasn't part of the journey how could it hold worth or be real? Sounds big headed I know! Yet I felt to solely observe others and give commentary as some kind of voyeur seemed to suggest that I was somehow different, better, or superior. If I've learnt one thing from winning the Adult Learners' Award it's that I'm part of 'us' which is really cool and I want to work 'with' other 'us' people (in this case other disabled people), in order to learn and share because this society is generally an unfair place where we have to fight our invisibility repeatedly.

While all this was going on I'm messing about with the web cam, playing with the controls for effects and I start taking pictures:

and I was stunned! Here I am a severely disabled, morbidly obese, ugly and hindered woman, yet this picture of me, even though I say it myself, made me look completely different to that, in fact I looked pretty good! And then I did another:

and although different to the other, I liked this one too.

So my thoughts turned to the idea of how I see myself, which moved on to how other disabled people see themselves.... and maybe how the 'them' that stereotype us see us too.

But more importantly how we feel about our bodies and what they can or can't do, or might want to do, whether they be deformed, unable to be used, scarred, painful, frightened, restricted...... whatever it may be.

So maybe poetry, photography, art, prose, in their utter limitlessness, can become expressions of the journey that tell the stories - not the theory - of complete and whole 'us' people. We don't have to actually become complete or whole, we already are, but I know that I, probably like hundreds and hundreds of other disabled people, have soaked in a lifetimes negativity about myself, from the medical institutions where 'we' fail to be healed, to the education institutions where many of us were segregated or underfunded in mainstream - so 'we' fail to become educated... and ultimately 'we' fail to live with absolute equality, in communities where other people believe and perpetuate the lies and deceit we may have learnt to be truth.

Much more thinking is needed - hopefully after the assignments are finished and not necessarily at 3.43am!!!

Diversity

2010-03-26T02:28:00.004Z

When I was working we called it Equality. Now more often than not it's called Diversity.

Today I came across this Diversity statement on the web. It wouldn't suit everywhere but it's the best I've ever seen, so far - and I've seen loads! So I wanted to share it on my blog.

'We've all heard services say they're committed to "diversity" and "tolerance" without ever getting specific, so here's our stance on it:

We welcome you.
We welcome people of any gender identity or expression, race, ethnicity, size, nationality, sexual orientation, ability level, religion, culture, subculture, and political opinion. We welcome activists, artists, bloggers, crafters, musicians, photographers, readers, writers, ordinary people, extraordinary people, and everyone in between. We welcome people who want to change the world, people who want to keep in touch with friends, people who want to reach out, people who want to meet their next love, people who want to make new friends, and people who just need a break after work. We welcome fans, geeks, nerds, and pixel-stained technopeasant wretches. We welcome Internet beginners who aren't sure what any of those terms refer to. We welcome blue-blazer regulars and people who know what a Pan Galactic Gargle-Blaster is and we welcome you if you have no idea what we are talking about.

We welcome you. You may wear a baby sling, hijab, a kippah, leather, piercings, a pentacle, a political badge, a rainbow, a rosary, tattoos, or something we can only dream of. You may be Conservative or liberal, libertarian or socialist — we believe it's possible for people of all viewpoints and persuasions to come together and learn from each other. We believe in the broad spectrum of human experience. We believe that amazing things come when people from different worlds and world-views approach each other to create a conversation.

We welcome poly's, polyamory, polifi, polyfidelity, V's, M's, Z's, quads, triads any any configuration you, or even we, can think of. We welcome groups, networks, LTR's and LDR's. We welcome the curious and the experienced. We welcome open-minded monogamous and the studious types.

With servers in the US we're obliged to follow US laws, but we're serious about knowing and protecting your rights when it comes to free speech and privacy. We will never put a limit on your opinion just because it makes someone uncomfortable — even if that someone is us as long as you keep it your own opinion and understand that everyone has the right to have their own unique opinion.

We think accessibility for people with disabilities is a priority, not an afterthought. We think neurodiversity is a feature, not a bug. We believe in being inclusive, welcoming, and supportive of anyone who comes to us with good faith and the desire to build a community.

We have enough experience to know that we won't get any of this perfect on the first try. But we have enough hope, energy, and idealism to want to learn things we don't know now. We may not be able to satisfy everyone, but we can certainly work to avoid offending anyone. And we promise that if we get it wrong, we'll listen carefully and respectfully to you when you point it out to us, and we'll do our best to make good on our mistakes.

We think our technical and business experience is important, but we think our community experience is more important. We know what goes wrong when companies say one thing and do another, or when they refuse to say anything at all. We believe that keeping our operations transparent is just as important as keeping our servers stable.

We use the services we provide, and we built it because we wanted it ourselves. We won't treat people as second-class undesirables because they're non-mainstream. To us, you're not eyeballs. You're not pageviews. You're not demographic groups. You're people.'

Pretty cool, eh???

It's from a USA site called Polymatchmaker.com Some people may feel less comfortable about it bcause of it's roots. Personally I think it's fab that this organisation exists and has this amazing diversity statement.

Banana Bob's my man!

2010-02-19T03:44:00.006Z

Well it's week 2 and Banana Bob delivered my second box of fruit and veggies today while I was at Uni.

Last week I asked him to deliver a £20 non organic box. I'd no idea what it would be like and wondered if the quantity would be better than the previous fruit and veg box store.

When it arrived I was extremely surprised. Both quantity and especially quality was amazing! Everything was far better than the usual supermarket products I choose too. I compared the itemised prices with those at the 'well known' (!) supermarket I use. The result was that these top quality products were on average 25% cheaper than my supermarket. A saving not to be sniffed at for a family on a fixed budget, especially when factoring in the added quality too.

Three family bowls of fruit salad later and we still hadn't managed to use all the fruit! The veggies were were delicious too and I was ready to ring Banana Bob for a repeat order of the non organic box each week. But I decided to wait for this weeks organic box to arrive first.

Yet again there was a box full of great quality organic fruit and veg. I was amazed at the difference in quantity when comparing with the first fruit and veg store of two weeks ago. I haven't had time to cook or eat any of them yet, but by the look of things I won't be disappointed.

There's no doubt about it I'll be sticking with Banana Bob. My only decision now is organic or non organic?

Oh dear! Just not enough!!

2010-02-05T17:35:00.005Z

Well the boxes arrived but unfortunately there's just not enough fruit and veggies to last a week. For example, we got three absolutely beautiful specimens of organic brae burn apple, but they were HUGE. Giant size no less!! We eat apples here all the time and need far more than that. As a minimum we'd need 6, but depending upon what other fruit we have, possibly even more. It would have been far better to give us 6 small or medium apples. Oh well, never mind.

It has to be said the produce is excellent. It's just the quantity that's the problem. I've never bought organic fruit or veggies before. The price has always been prohibitively high for me. This is the case here, I think. There's no point in getting boxed organic fruit and veg delivered, if I still have to buy some from the supermarket. Soooooooooooo.... I cancelled the order for the time being and contacted:

Banana Bob's: http://banana-bobs.com/

After having a chat with Bob, I'm buying a non organic box for next week and an organic box for the week after. This will help me compare quantity, quality, taste, etc. He said I'd get loads of fruit and veggies, esp non organic ones, for £20. So, I'm interested to see what I'll get for 'me' money.

I'll be looking for other boxed veggie schemes nearby in case I want to try anymore. Suggestions welcome.

Meanwhile, I've still got the excellent produce from Beanies. Anyone got any good, tried and tested recipes for celeriac???

More to the point, what do they actually taste of?

Bean sprouts and organic veggies.

2010-02-03T02:00:00.005Z

For many years I wanted to visit Beanies, a health food shop run by a co-operative, at Crookes/Walkley in Sheffield. It's located on the other side of the city to me and seemed reasonably inaccessible - probably the reason I've never visited. But they had a bean sprouter thingy in stock, so I wanted to get it.

I've never grown bean sprouts before but friends came to lunch over the weekend and we made salads which included bean sprouts. LittleBoo loved them so much she asked me to give them for her to take as snack at school! Beats chocolate any day. I was very pleased to hear LittleBoo's request because I've been discretely working hard to get rid of the sweet tooth she gained over Christmas. Job done!!

So I went to Beanies with Rach, one of my PAs, who's lived abroad for around 15 years and recently come back to a cold, wet and dull UK. I love Mondays because Rach tells me all her experience of living in a warm country and how life was easier than here. Back to reality as Janice (the van), does her stuff and I'm lowered carefully to pavement level in the rain and cold. Bbbbrrrrrrr it was really cold.

Beanies had a portable wooden ramp and access in to the shop was easy. There were two steps to the veggie area though, which was a nuisance but we soon overcame the obstacle with help from Rach and the staff.

Beanies is fab!!! I loved it. I managed to not only get my Bean Sprouter, but many other things too. Then I realised they deliver organic veggies and fruit all over the city. I've never had one of these box services before because I was unsure about if I could afford it. But now I'm needing to eat much more healthily because of my 'tummy' probs, as well as my weight, maybe it was 'the' option to be prioritised.

So I've ordered my organic fruit and veggie boxes, which wil arrive this Friday. Can't wait!

Meanwhile LittleBoo and I are watching the mung beans carefully and patiently waiting for our first bean sprouts. We're also going to try making our own soya yogurt tomorrow! It feels great to be taking such positive steps in looking after ourselves, teaching LittleBoo about more about food and at the same time supporting a local co-operative. So much better than going to Tesco!!!!

Beanies web site: http://www.beanieswholefoods.co.uk/

So many people reading this boring blog!!!

2010-01-18T03:02:00.003Z

Hiya, according to the stats on the map, there are several people online at once looking at this blog. There have been several hundred people visiting here in the last few hours alone. My blog has never had this level of traffic. It's puzzling me. Why are so many people looking now? If you're reading this maybe you're one of these people? So hi, and I just wondered how you found this blog? Thanks.

A new year resolution - Not!!!

2010-01-17T21:11:00.003Z

Friend - So what's occurring?

Aliboo - I went swimming. Well let me clarify - I went in the swimming pool and walked almost 50 metres.

Friend - Lush!!! What did it feel like?

Aliboo - It hurt. I'm exhausted!

Friend - But you did it!

Aliboo - I did!!!! :-) But I'm so unfit and not physically strong.

Friend - So what are you going to do?

Aliboo - I'll start going regularly and try and build up my strength.

Friend - Lush!

Aliboo - Aye....... Oh NO!!! The cat's vomited on my bed. Ugh!

Friend - Not lush!

The end of a decade.

2010-01-01T03:06:00.003Z

☆°※°☆░H░A░P░P░Y░♥◦※◦- ♥░N░E░W░♥◦※◦♥░Y░E░A░R░♥◦※◦♥░2░- 0░1░0░☆°※°☆

'It was the best of times. It was the worst of times....'

The decade is over and it goes non too soon, as it signifies the end of my hardest years.

The noughties have represented to me both all that is the very best of humanity and quite honestly times of humongous pain, fear and heartbreak, where the darkest side of life seemed to prevail, for far too long.

I'm not going to regurgitate all of those happenings, some are written about in the pages of this blog but many have been experienced privately, without making them known to anyone. Suffice to say they're in the past as this new decade hails new beginnings with the strength the years in between can't do.

So here it is 2010! I don't know if I'm a better person because of my personal struggles. Like anyone, I'm a product of my experiences regardless of the quality of those experiences. But there's only one way to go, and that's forward. I've already a proven record of taking steps and moving into new parts of my life, but there's so much more to come. That's no prediction nor fantasy. It's more like a dream that I'm moving into, as I begin to live life the way I want to, rather than the way my circumstances demand.

So that's it. 2010 has to be different. 2010 will be good for me, I'm determined. And I wish that for all my friends and family too.

So ☆°※°☆░H░A░P░P░Y░♥◦※◦- ♥░N░E░W░♥◦※◦♥░Y░E░A░R░♥◦※◦♥░2░- 0░1░0░☆°※°☆ to you and yours. May it be healthy and happy too.

Thoughts and Happenings.

2009-12-06T03:59:00.010Z

I can't believe I haven't written on here for so long. It's been a hard few months beginning with, just before the semester started, Grandma Redwood dying. Death stinks. If there was one person I wanted to live forever it was her. She was only 92 and from my selfish view point, far too young to die. I loved her far more than I realised and I needed her wisdom and life spirit far more than I ever knew.

She worked for my mum when I was a child and was my second mum. My love for her was unquestionable. Her death still feels quite raw and she is on my mind daily as I think of her life and have sight of her home when taking LittleBoo to school. Many, many lovely memories fill my mind's eye, as I think of a woman who lived life with a most wicked and wonderful sense of humour and who cared for, and loved so many, but would never suffer fools gladly!

Of course there are many people I don't want to die, including myself, and around the time of Grandma's funeral I was being examined for problems with my colon. This resulted in a polyp being removed....hopefully benign, and the discovery of Inflammatory Bowel Disease, which I'm told is probably either Crohns Disease or Ulcerative Colitis. Only a week or so ago I received a letter to go and see the Consultant for the results of the biopsies in a few days. I'm pretty certain the polyp isn't anything to worry about and feel it'll be about this inflammatory stuff. I'm assuming I'll be given the correct 'label' and course of action. Either way I'll just get on with it, whatever it is!

John and I have had some major wobbles. We're still 'us', although we don't seem to be able to find much mutually free time. I love him to bits and he's important to me. There's no doubt he loves me too, but we're very different and because of the distance between us I think we've both fallen into the convenient trap of communicating via instant messaging, with all the lack of depth it presents. Instant messaging is one way to communicate but not a medium to cherish and nurture a relationship of significance, like long term primary or secondary Poly relationships.

Open relationships (or Polyamory - 'many loves' as it's often called nowadays) work well when they work well. And whilst I imagine, no one but game players would want poet Thom Gunn's description of a relationship in the poem Jamesian,

Jamesian. by Thom Gunn

'Their relationship consisted
In discussing if it existed.'

it seems that unless 'things' are TLCed, there is little difference from just having a non serious but friendly relationship, which is not where we believe we are/were at. Nevertheless we are both good people and neither of us goes around intentionally letting down or hurting anyone, least of all, each other.

But I do notice others around at Uni and in the other places my life takes me regularly. I never realised the capacity I actually have to potentially love, yet at the same time fear the very power of the capacity that creates the spark which can make me catch my breath.

I no longer seek another in the way the naivety of youth once persuaded or led me. The days seem too short and the nights long, yet filled with what I hope is creativity and the desire for eventual painless and restful sleep until passed dawn. If I connect with someone it's always unexpected. Yet it's likely I'll always be alone. How to explain this without cause to visit pity still baffles me, even after all these years.

I'm told by many that I am a lovely person and certainly as time has gone by I am far more content and peaceful than I ever expected. I know I think of my behaviour and its consequences on others. I also believe strongly in being positive about everything, yet gentle, where ever possible. Nowadays I don't seek others to fill the gaps in me, I know I'm the only one who can do that, if I want to be anything like real.

I've lived alone with the kids for so long now, I can't imagine living with a partner. It's not that I'm too long in the tooth, of course not! I'm always open to learn and experience more of this wonderful world we live in. But reality tells me that it is likely that most of my life I won't have that important and special connection and commitment with Mr or Ms Significant Other.

I guess it's quite sad really and at times has caused me sadness. But now I realise that I can give to others and impact on lives around me positively through the activities I'm involved with. Of course this isn't the same, but it's more than I realised and gives me many interesting and varied acquaintances and friends..... and often acquaintances who become friends!

I understand why it may be hard for others to move from being friends to being a boy/girlfriend, or even a partner, and I no longer feel the need to be critical. There is no doubt that my personal severity of disability impacts on life negatively as well. I'm slow and tired and achy. I'm supposed to nap in the afternoon for an hour (I ask you!!!! hahahaha) and I don't climb mountains or go dancing. What I eat ends up on my hips and I seem to drop everything I hold, but weight.

So I understand if someone needs something different. Why choose my road if other roads exist? It's OK.

TeenBoo was 18 on Friday! Unbelievable! He's also flown the nest and is grasping life with both hands, hopefully with lots of work, rest and play! It's strange not having his presence here and even stranger having a girly only household, but LittleBoo and I seem to like it so far.

Uni continues. One of this semesters modules seems naval gazing, but it's a core module so I go navel gazing once a week. I just have to get through the hoop and then I can leave it in the past - I hope. The other module is cool. I'm creating a film based on looking at the relationship between sound and image. The theme I've chosen is Life Before Death and it's my private dedication to celebrate Grandma Redwood's full and influential life. Like always there's never enough time. But I'm getting to grips with the software and as my tutor says trying not to let it intimidate me.

How do people live on long term benefits? Mine have reduced by what seems rather a lot after TeenBoo leaving. I'm readjusting slowing but with Christmas so near it's felt a bit difficult. Next year I will buy Christmas pressies each month and not be in this position. (I think I said that last year too!)

I feel rather overwhelmed by the 2 of us living in a 5 bedroomed house and so keep my eyes open for totally accessible social housing, or shared ownership stuff. It's not urgent of course, but it would be lovely to live somewhere where there are more people like me, and where the influences around us present positive living experiences - now that would be cool.

All in all, I'm happy and this afternoon we might get the Christmas tree up. But the toilets blocked again, it's 3 o clock, and I need to shower and dress first..... so we'll see!

Janis

2009-09-20T22:03:00.002Z

She's called Janis and she's wonderful. I reckon I've had her for almost two months now and she's part of the family. There have been a few teething problems but generally Janis and I are getting on well.

She's my Burgundy coloured, 1 year old and has done around 15000 with her previous keeper. Yes Janis is my Mercedes Benz Sprinter van, with full wheelchair access, including tail gate lift.

She's already changing my life for the better - more stories to come.

So why's she called Janis?

'Oh Lord won't you buy me a Mercedes Benz, .....' Janis Joplin.

Mercedes Benz tomorrow?

2009-08-10T15:28:00.004Z

So it's supposed to be coming tomorrow. But I've been given so many possible dates, it's hard to know if I can believe it.

I'm pretty certain it will happen and therefore as of tomorrow my independence will increase too. I can't wait for that!!!

Pictures and stories tomorrow.

Where is my van!!!!!!!!!

2009-06-25T14:08:00.005Z

'Not here,' said the drive at Aliboo's house.

Where is my van?

'Not here,' said the little road to the drive at Aliboo's house.

Where is my van?

'Not here,' said the big road to the little road, to the drive at Aliboo's house.

Where is my van!!!

'Not here,' said the motorway to the big road, to the little road to the drive at Aliboo's house.

Where is my van!!!??!!

'Not here,' said the dual carriageway to the the motorway, to the big road, to the side road, to the drive at Aliboo's house.

Where is MY van!!!!

'It's here,' said Alfie, Mick and the other engineers. We're all working hard to make sure that it's just right for YOU. I know we said you'd probably have it last week, but now it'll be the week after next. Sorrrrrrrrrrrrry!

But I want it NOW!!!!!! *bottom lip quivers*

NOT in my name!

2009-06-08T01:50:00.000Z

The racist BNP have two seats in the European election.

It's a disgrace - they hate everything great about Britain.

I've just signed a petition which says NOT IN MY NAME. The petition will be handed into the European Parliament on the day that BNP leader Nick Griffin goes to the European Parliament. I'd like you to sign the petition as well - let's show the rest of the EU what we think of the racist BNP:

http://action.hopenothate.org.uk/notinmyname

Apart from their well known racism, the bnp in their whatI call 'between elections' manifesto stated their policy towards children with disabilities education. The manifesto said that all disabled children would be removed from mainstream schools and put in 'special' schools where they could be cared for appropriately and ensure that ablebodied pupils would not be held back by them!!!!!!!! (my words, not theirs).

Of course this has disappeared now. I've searched and searched for it but during this election time it can't be found anywhere! I'll copy the link when and if it resurfaces its ugly head.

Wisdom

2009-05-26T17:50:00.002Z

When the student is ready.....

- Buddhist proverb

One year on - a quick greening audit.

2009-04-11T23:35:00.005Z

It's been almost a year since I met John and not only did we start a relationship, but I also began to seriously audit my life as far as how green I was and how I could live a greener life. So looking back what have I done? What's changed in a year? Here goes:

Changed almost all my light bulbs to energy saving ones.

Moved my bank accounts to The Cooperative Bank, it's ethical and run by members, not shareholders.

Started recycling, paper/card, cans/plastics, glass.

Making sure I don't use plastic bags.

I'm using a roll on deodrant.

Not flying - but is this because I know this is a huge carbon user, or because I can't actually afford to fly? I'm still fighting that one out inside.

Began turning off things when not in use. This has been hard for me as standby is a much more accessible than my plug sockets.

Used public transport loads until having an accident in Nov, now less confident.

Drinking tap water (via my fridge) instead of buying bottled water.

Using an aluminium drinking bottle instead of a plastic one.

In the middle of auditing my clothes and seeing what I want and need to keep, what can be recycled, taken to charity shops, or sold on ebay. Why do I have so many clothes I've never worn?

I've been clothes washing with less soap and sometimes no soap at all.

I've been wearing clothes more than once whenever possible. I used to do this and then gave up on it once I had my children as the washing machine always seemed to be on.

I've tweaked my monthly finances and given myself a specific budget head to handle the extra cost of buying Eco products each month. This normally works really well but there are months when things are tight and I need to use the money for other things. I feel OK about this.

I've started composting!!! Oh yes, this is my newest experience! I have a wormery and a Bokashi unit. I'm learning how to use both of them and find it terribly exciting! Does that mean I'm sad? lol I'm also waiting for a 'normal' 300 litre composter converter to be delivered and can't wait to start using this too.

I generally use the microwave more. I part bake potatoes in the microwave, then let them crisp up in the oven.

I have a small 100 litre water butt, but need someone to fix it in for me. I 'think I could do it myself, but I'd hate to get it wrong.

I'm growing seedlings. Some flowers for LittleBoo, sunflowers and Aster, and herbs for me. I've also started tomatoes and early potatoes. I've yet to sow my beans and other things, including salad leaves.

I've bought 4 huge containers: www.hartcanna.com/pot3big.jpg Mine are the biggest ones in the picture with 350 litre capacity. They are almost a metre high and in diameter too.

I was concerned how I was going to fill them but then Robyn, via Freecycle sent two men over with 3 trailer loads of soil to fill them and a raised bed I have. Today a friend came to put up my rabbit hutch (Little Boo's 6th birthday is this coming week and she's getting rabbits) and I realise two of them are in the wrong place!!! Now I need around 4 or maybe more strong men to move them. It's not far at all, just 7 - 10 feet, but they are heavy!

Another ad in Freecycle this time I put a wanted ad for garden containers, trellis, hanging baskets and any other garden type accessories, resulted in a woman called Helen offering me 5 hanging baskets. (I hope to maybe get some more answers).

John has given me a huge amount of compost in different stages. I know it will make a huge difference to the quality of the soil and in the years to come to the veggies I grow in it.

I treated myself to a solar powered radio. It's really cool!

Things I will be doing:

I'm going to change my electricity supplier to Good Energy Ltd, who only use renewables. I'm on a contract with another company for a few more months, but once that's expired I'll move over.

Growing more veggies and fruit. Expanding my knowledge on how to do this.

So things have moved on during the last year. I'm not proud of it so much as excited by it all. I'm not doing so well I stand above others but I have changed my lifestyle considerably for me. It's been good to think before I buy, plan before I go on a journey, and search for other ways of doing things.

Even with all this my life is a contradiction in places and I learnt to feel OK that for many disabled people, or elderly people, perhaps even people living on their own, trying to be greener has to come second in many parts of our lives just now. My new wheels are bigger, no doubt more powerful and carbon heavier than my present version. But this is the vehicle that Motability have chosen for me and it will give me a freedom and independence I've not experienced for years. My independence is a great tool to enable me to give more in life. For me I have a basic philosophy at the centre of everything I believe in. It is that as long as we give more than we take, the books balance. This van will enable me to do that, so it becomes a necessary tool of my life and until Motability uses it's massive buying power to influence the car industry in a greener way, I'm happy where I am and sincerely hope many other severely disabled people are able to access the same grant I've been able to.

Nevertheless researching and increasing my knowledge and action of more Eco ways of living is still a priority. For example, the possibility of having more solar powered stuff, or even small solar powered panels, using them to power some of my life, like for example, the electrical stuff in my bedroom/office would be cool. Eventually I'd loved to go the whole hog and have solar powered water heating and the rest of the houses electricity use powered by the sun too. That's a dream for now but we all ned dreams.

Lifelong knowledge and expertise.

2009-04-09T09:54:00.003Z

I found this piece which you've probably seen before - I hadn't.

'There was once a woman who was walking through a square when she came across a man creating a painting. As she got closer, she realized that the painter was Picasso! She had always admired his work, so she approached him and asked if he'd paint her portrait. She'd pay him "anything". He agreed.

About 20 minutes later, he showed her the finished work. She was amazed! She exclaimed how wonderful it was and how much she loved it.
"How much do I owe you?" she asked?
"Twenty thousand dollars" he answered.
She was mortified. "Twenty thousand dollars!?! But . . . it only took you twenty minutes!"
"On the contrary, madame. It has taken me a lifetime."'

It made me think about just how much knowledge and expertise is needed, in this instance, to grow things, whether it be just a humble potato or some exotic fruit. So whilst the soil holds years and years of secrets of how it came to it's composition today, the knowledge and expertise lies in how to use the soil with each plant successfully. The lifetime gardener knows about all of this without looking in books or on the Internet. Their knowledge is built out of years of gardening themselves, no doubt trial and error too, as well as learning from the lifetimes gardening experience of the generations before them.

And so I'm becoming hooked. I have no experience at all and I'm far too busy with other things already. I look to my friends for help and information to make my ideas into a one step at a time, successful and sustaining project. ........ we'll see!

More from the green Green who's surely and steadily greening nicely.

2009-04-07T17:03:00.006Z

It's all beginning! And a very good beginning too. Today my patio garden has begun to be transformed. By teatime it'd changed beyond recognition although looks rather nude as there aren't any plants, veggies or flowers planted yet.

I owe this huge positive step to a man who advertised on Freecycle who had/has apparently around 30 tonnes of soil going spare. He also has a trailer and was able to get two guys who work for him to bring round 2 huge trailer loads already, with the third following tomorrow morning, mainly being top soil.

On top of that one of my Edinburgh friends, Sally and her daughter Katie came over for the day. It was good to see them and Katie who is 11 and extremely practical put together my new outdoor storage shed type of thing. She was most impressive and has done a great job. This half height shed thingy is going to house all my recycling bins and hopefully make things much easier for all the carers/Pas who work for me.

The raised flower bed housing the lilac is now full of incredibly good and healthy soil. The above pic is the before pic. The four 350 litre containers I bought from a company 'down south' are now almost full and just waiting just for top soil. Here's a pic of LittleBoo in one of the then unfilled containers. But they're just the right height for a wheelchair user.

Now all I need is the compost John's promised me, someone to connect my water butt, my compost bin arriving and I can start planting!!!!! How exciting is that for this green Green - yet another step towards becoming greener and working towards some kind of self sufficiency. Hopefully I'll be harvesting my first veggies in the summer time, what a great feeling that will be!

LittleBoo says.....

2009-04-04T13:42:00.002Z

LittleBoo and Year 1 teacher were talking in the ladies. The taps made a gurgling sound. LittleBoo said, 'I think the taps need the toilet!' They both laughed. [yep we're on to toilet humour!!]

What is a deer with no eyes? No eye deer!!!

Why didn't the worm go in an apple in Noah's Ark? Because all the animals had to go in pairs!!!

Age of Stupid

2009-03-28T02:23:00.003Z

The Age of Stupid is a definite must see film, from both the vital subject point of view and for appreciating the art of independent film maker, Franny Armstrong at writing and directing such an incredible, powerfully told drama doc, with hardly any money and (I believe) only 1% of the usual carbon footprint most cinematic films are made with.

Starring the wonderful Pete Postlethwaite as the only man alive in 2055, looking back at his archive from 2007/8 and asking the question, 'Why didn't we do something about climate change when we could have?' the non preachy true story unfolds by taking journeys to different parts of the world, visiting people whose lives are already affected by the power of climate change.

Whilst each story is in its self is compelling, having them all within a 90 minute film, far from egging the pudding, shows perhaps just how desensitised and complacent different parts of the world have become to situations outside of their own experience.

As far as I understand Franny Armstrong and most, if not all of the team, worked for just the minimum wage, or maybe even less/nothing, for 5 years in order to make the film. The film wasn't funded by grants or money from corporate investors, but from individuals who believed in her, took a risk and shares in the project.

In summary The Age of Stupid is well worth watching. It's educating, disturbing, inspiring, motivating and far from making people into eco geeks, just shows us how important yet ordinary we should consider the changes we can make in our lives as individuals now. Yet at the same time how essential it is for the world powers to get to grips with the truth and begin to make and agree a coordinated, effective and meaningful plan about the action they are required to take NOW! Enjoy ......well enjoy isn't the right word, but I'm sure you know what I mean!

More info is available from www.ageofstupid.net Since the film's been launched 'Team Stupid' haven't stopped there and have launched the next step..... Not Stupid! All info, is on the web site.

Wheels are a coming.

2009-03-05T01:25:00.002Z

I'm still waiting for my amazing van. Apparently the papers are on their way for me to sign and things are moving along the process quite well. Here's a link to a Mobility Sprinter with a lift like mine will have. Mine will be the short base one 'Phew' can't image driving that long one! It will also have less seats in it.

Tell me what you think - apart from ther fact that it isn't very green, although the one I've opted for is second hand which was a good decision I think.

http://www2.mercedes-benz.co.uk/content/unitedkingdom/mpc/mpc_unitedkingdom_website/en/home_mpc/buses/home/products/new_buses/_Sprinter_Mobility/highlights.html

Catch up time!

2009-03-04T23:28:00.002Z

It feels so long since I've written anything. To be honest I've just been too busy or too tired February turned out to be a hectic month with Uni starting again, various conferences, Board meetings, 5 new PAs starting all at once and 1 little cat needing re homing. On top of all that family life continues and as usual is hectic, buzzing and exhausting.

Last week our favourite builders concreted over the last part of surface area needing covering. Now our patio garden can begin. We've been lucky that someone has offered us a good quality garden bench and LittleBoo's school is selling (order now collect in a month or so), loads of bedding plants, etc, to fill the huge amount of pots and baskets I hope to have. (Note to self: Put post on free cycle for large planters not needed by others).

Then over the weekend I got a letter that said my last eye test had revealed the first stage of retinopothy. Absolutely not fabulous. But like everything else, some way, somehow, I'll survive it!

I just slept 23 hours out of 25!!!!

2009-02-02T00:00:00.003Z

This weekend LittleBoo went to Julie's for a sleepover. LB loves this treat and I get loads of very precious time to myself too, so from our POVs it's a win win situation.

Julie collected her about 11ish on Sat morning. I went to bed for 'an hour' intending to get up, get to the train station to buy tickets and then go to the cinema and watch a film. It didn't turn out like that though, as the next thing I knew it was 2am in the morning! I realised I'd answered the phone a couple of times but apart from that I'd been flat out. 14 hours sleeping!

So I made some toast and a drink and came back to bed. I surfed the net for a while and read a bit. Then I thought I'd get up early and go to the shop for Sunday papers and some croissants for a treat.

But the next thing I knew it was 1pm ish Sunday afternoon!!! I reckon I went to sleep around 4am, so that's another 9 hours sleep!!

In total then , I slept 23 hours between noon on Sat and 1pm ish on Sun. How is that possible?

New wheels on the horizon!

2009-01-19T00:13:00.002Z

Monday saw the Motability man visit with a massive wheelchair accessible van for me to look at.

Since things have got worse it's been harder to cope with my lovable Kangoo and several months ago I rang Motability to see if they could help. Motability is the UK charity that helps disabled people who get the the Mobility component of a UK disability benefit, get on the road. I've had a lease car from them for as long as I remember.

So Motability responded to my query by interviewing me over the phone and then sending the information to their 'Solutions Team' What a positive place to work! I'd love to be part of a Solutions Team!

And true to their name they found a solution for me, Although I knew they'd give me a grant, it wasn't until Steve, the Motability man from Newcastle arrived, that I really began to understand what this might mean! Absolute and total freedom! And not just for me but for LittleBoo too.

And the man from Delmonte, well Motability? He's recommended me for a Mercedes Benz Sprinter 209. It's amazing! I'm amazed!! I never expected such a thing.

I saw the model he'd driven down from NewCastle. It wasn't new but very similar to today's models. I swear it's nearly as big as my bathroom! It's huge! To get in I remain in my wheelchair and use a remote control to open the back doors and lower the lift. From here I press a button to get up to the level of the van. Inside there are 4 seats, 2 folding in the back and 2 front seats and lots of space even when the wheelchair's secured.

If I want to drive I transfer from my 'automatically secured' wheelchair I move on to a chair that is turned to face me and transfer. Then the chair is moved by electric controls, first turning to face the front, then moving forward into the drivers space, then the choice to raise or lower the seat to suit! all by electrical control!

I am in Heaven! For the first time in what feels like forever I will be able to go out safely and easily by myself. No more nasty bus drivers for me to put up with, although I'll miss the majority who are anything but nasty.

Of course it's less green than my current car. But I feel perfectly OK about it. I can't walk and I am part of the human race. I can't rely on public transport 24/7. Not just because of the 'nasty' bus driver, but also because the tram is ten minutes away from here, via snickets, fields and a playing park which would be totally unsuitable for me to use after dark. My new van will mean I'll be able to travel safely at night and as long as I feel OK about driving, it provides a facility to enable me to go to anything by myself. Something I will never take for granted.

So when do I get 'my' freedom van? I'm told within three months or so. I've just got to be patient. It's worth it though. But I just can't wait!!!!

Back at last.

2009-01-12T00:36:00.002Z

It's been so long since I posted. I'm feeling much better, thank goodness, but still advised to take it slowly. Mind you, it's been a long time since I last felt well so I don't want to go too slow!

But just to begin with....... a mild funny that happened here yesterday.

We all came in after having tea at the 2 for £5.00 pub. I saw Trevor my lovely youngest cat and said to him, ' Would you like to come and have a snuggle with me tonight?'

To which a little voice, in perfect timing said, 'I'll just check my diary!'

My LittleBoo.... what a great sense of humour!

HAPPY NEW YEAR

2008-12-25T03:14:00.002Z

Happy Christmas and Holiday Time.

I hope you all have a wonderful relaxing time and that 2009 is everything you want it to be.

Much love Ali x

As you may know I've been under the weather and mainly in bed for the last 5 - 6 weeks, since the bus driver on my way from home from Uni gave me and my electric chair a good jolting, it seems because he couldn't be bothered to release the kneeling bus bit.

Anyhow, I am slowly improving, but it's been a much longer 'do' than I expected. So I've hardly had a chance to get out and about, as not driving just now (too many prescribed drugs) and not had loads of energy either. I'm also finding it hard to concentrate on writing for the same reason. I fall asleep mid sentence, which sounds funny and of course is/can be, but terribly annoying too.

I don't know, me and LittleBoo help the NHS go from strength to strength!!!!!!!!

Bed, legs,

2008-12-01T23:39:00.002Z

Not much has changed. The diazapam to help with the spasms, has definitiely made a difference, but I'm falling asleeep in mid conversation, or just about anywhere, like on the way to the bathroom, or when typing an email.

Regardless of the rejigged pain meds, diazapam and sleeping tablet, I'm still in pain. The intensisty varies and with it, how I feel I can cope with it at any one time.

Overall, I feel very weak. I'm going to try hard to get out of bed and sit in my armchair for an hour or two. I even took LittleBoo to school today. Then TeeenBoo and I did some housework. Then I drowsed on and off.

And now.... goodnight!

Been in bed since Thursday.

2008-11-24T22:57:00.002Z

Over the week things became much worse with my legs and pain levels. In the end, after much deliberation, I went to the local A and E on Thursday, where I was thoroughly examined and told I needed several weeks respite as I was so tired and at the end of my tether in terms of handling increased pain.

My bones are so damaged and deformed that all it takes is the bus experience of a week last Weds, and I'm facing considerable pain and a ridiculous loss of the very limited mobility I usually have.

Negotiation and compromise are great skills at times like these and through them I began to realise that I had to listen to my body and rest. I'm slowly, very slowly improving, thank goodness. But the muscle spasms and 'electric shocks' are taking much longer to deal with. I'm not sure how much more rest I need. Like usual my diary is full but I'm prioritising Uni - although didn't go today.

I guess this something that can't be rushed.

On a brighter note the doc gave me 7 days of sleeping tablets as I hadn't slept for 4 or 5 nights. They are low dose yet weirdly I've been having very mild hallucinations with them. They've not been at all frightening and each time I've realised them for what they are and known they're not reality. I'm sure having a short course of them in my situation is a good use of them, but I'm so glad I don't need them all the time.

Kerb climber, foot rest and pain, never ending, insidious pain - OK I'm feeling a little sorry for myself!

2008-11-14T00:25:00.005Z

Yesterday I faced difficulty after difficulty from 5pmish until I went to bed. Fact is stranger than fiction. But each event is true. OK here goes...... and it's quite a list!

1. On the way to the bus stop the kerb climber fell off wheelchair on the way to bus stop from home - put it in jute bag on side of arm.

2. Got to health clinic, the doctor greeted me and we went to the one consulting room that is big enough for a wheelchair..BUT someone had already got it, in the time it took the doc to get to the waiting room and back!!!!! So waited half an hour and everything was fine

3. Got another bus to Uni and arrived around 7.15pm.
The Music Dept is changing buildings at Christmas but just now it's in a big Victorian house with drive, lots of trees and at night v dark. There was no one around AND cars were parked blocking wheelchair access to the only (reasonably) accessible door I can access the building from!

I couldn't get anyone to hear. After about 10 - 15 mins a man came along and got my tutor's attn, the car was moved but I forgot my kerb climber was in my bag so struggled to get in anyhow!!!!!

As it was reading week there was only one other student there! They were just about to leave but decided to stay, so I got all my work done!

4. Then I went for the bus into town. When we arrived there, the bus driver refused to put the bus on 'kneel'. I told him it was too unsafe for me to go down the ramp as it was far too steep, so angrily he supposedly knelt the bus, but it hardly made any diff, and I beleive he didn't press the button long enough.

So i tried to get off the bus, it was absolutely dangerous but thankfully I was OK at the time, but the footrest is broken as the wheelchair 'fell' off the ramp a bit
the bus driver was pushing the control, without realising it and therefore pushing me back on to half the ramp and half a void.

5. Anyhow I survived, and my next bus went sailing past, I hadn't had tea yet and suddenly realised I was desperate for the loo, so decided to go to nearby Cafe Rouge and use their toilet. I thought Id buy a sandwich, but I was wrong, it wasn't a coffee bar as I thought. It was a sit down restaurant, where everyone seemed dressed up and there I was in my leggings and mac! So I said I was meeting someone there, dashed to the loo and managed to have a wee. Oh the relief - physically and from the potential embarrasement of having an accident!! (NO accessible loos in the old Music Dept)

6.So after saying I'd meet my friend outside to the waitress, I left and wandered back to bus stop and then my hand control fell off the wheelchair! There was this heavy unit trailing on the floor, connected by a wire.

Somehow, no idea how, I managed to hold all my bags, my water bottle and control this heavy dangling unit and got to a marble bench. I tried and tried to sort it
and in addition the whole unit had extended and made the wheelchair 6 inches wider, which made it.......far too wide to get on bus!

7. So... this city security man came over and said he'd been keeping an eye on me and was worried. I explained and God Bless him, he managed to sort it, so apart from carrying the exceptionally heavy kerb climber, and the leg rest, I got home in one piece by around 10;45 and had egg and chips.

All this since 5.00pm and after a busy day filming with already achy and tired bones because of my busy lifestyle.

But when I woke this morning I could hardly move and my pain levels had shot through the roof. So today has been a wash out, all plans postponed or cancelled. I've just slept and slept and tried to move as much as I can - which seems less and less just now. I hate this level of pain and the amount of painkillers I have to take too, because they don't reach the pain, let alone take it away.

But even though this is true, whilst I've been writing this, I've been listening to This Week in Politics and hearing a debate about assisted suicide. Not for me, thank you! Like loads of other disabled people, I'd smoke marijuna rather than that - but obviously not when I'm responsible for my kids, etc!

More food.

2008-11-02T00:14:00.006Z

A few months ago I wrote about my difficult relationship with food. (Food Glorious Food - Part 1) Not much has actually happened since then because of lots of other things going on, For example, LittleBoo being critically ill during the summer.

In fact the stresses of the summer have added to my food problems as apart from having a month eating hospital food, I've also comfort eaten to dull down the understandable fear, distress and pain I felt as I saw my daughter suffering so badly.

As she got better and was finally out of hospital she recuperated at home and I was relieved and exhausted and my bad eating habits continued. And so it continues. In fact since then I've been eating gluten (and suffer for it - my fault) and things seem to go from bad to worse. It seems impossible to stop.

It's hard to understand and I don't expect anyone to really. A friend who's a therapist was chatting with me. She doesn't particularly like the term eating disorder, and prefers the description eating solution. In essence, where someone has 'chosen' to use their relationship with food as the solution to another situation. Sounds complex and I guess it is. But I totally understand where she's coming from, even though I don't understand how it directly applies to me.

Around the time I wrote the other blog post about food, I was spending much time searching and finding out about why my food 'problem' felt so dangerous and out of control. I read much and began to understand that the labels, anorexia, binge eating, bulimia, compulsive eating and food addiction, are all expressions of the same illness or disorder.... or as my therapist friend would say, all solutions to an underlying issue.

A month ago I finally had enough courage to ring the Eating Disorders Centre. I had an assessment about two weeks ago and I'm on the waiting list for treatment. In the meantime they're offering me alternative therapies to help me relax a bit. So there are things like Indian Head Massage, Reiki, back massage, etc.

During the assessment I explained how I'd been told as a teen that I was pre anorexic. I was also bulimic for a time and now everything is out of control and I don't known who, what or why. But I am morbidly obese, and my weight can fluctuate by stones quite frequently. It was explained that this pattern is familiar and in some ways I'm a text book case.

This knowledge was strangely comforting.

But now I'm feeling down and at a loss. At times quite desperate and scared. I'm big. I don't know how much I weigh. I don't feel I am able to find out yet. This wait seems to be forever.

I have days like this where I need to eat because I'm hungry, yet I'm so confused about it all. It's very hard to explain. It's like not 'daring' to eat but then having to eat in order to dull the pain the whole issue causes. And then just when I know I'll never eat again, an hour or two later I eat. I am my own worse enemy. I am also an intelligent woman, according to my last IQ test the result was 140, which is ridiculous. But my intelligence, regardless of where it figures on a questionable measure of intelligence, can't get the better of this issue. It is put on hold, paused, suspended, until normal service is resumed. This illness/condition/disorder/whatever, appears to have a masssive amount of power over me. All the time, all day, every day.

How did this happen? More importantly, how can it stop?

Getting Greener.

2008-10-26T22:18:00.003Z

Well another week has gone by and a new one about to begin. It's the school holidays here, but no break from Uni where the pressure of work continues to build up steadily.

Last Friday I decided to began the process of changing my bank from the HSBC to the Co-operative. It's something I've been meaning to do for ages and has nothing to do with the 'credit crunch' but more part of the process of 'greening' my life. So I'm moving to an ethical bank, run by the membership and without shareholders.

It's another step towards moving from talking about being green to living being green.

A few days previously I changed almost all the light bulbs to energy saving ones- finally! I had no idea how cheap they had become, so could easily afford to buy some. I've even found some halogen energy saving ones, which apparently last 10 years - but they are expensive, so it's one at a time for a while.

I think we're all getting better at turning out lights when we leave rooms, wearing slippers and putting on a jumper when feeling chilly. But it's not cold cold winter yet and I know I need the warmth to keep well, so it might be different then. I've also ordered and been waiting for a special duvet for my bed. I've been feeling cold at night for the past couple of weeks, yet the duvet hasn't arrived, even though it was ordered from the disability shop on 1st October. I hope it arrives this week.

Films, Chronicles, Hospital appointments and College - an update.

2008-10-22T20:19:00.004Z

Life is hectic. Today has been no exception and I've so much Uni work to do on top of everything else the PAs and me have to do to run the home.

My Uni work is full on. I'm taking two modules which both require a lot of creative thinking and therefore an enormous amount of time. Thankfully they are only until Christmas, but even so, until then I think I'll have very little time to do extra things.

Firstly, I'm making a short film. I'm learning to use editing software and looking at the relationship between sound and vision. It's exciting, stimulating and so absorbing it could end up being something that takes over everything else, if I let it - which I can't afford to do - there is so much else!

I'm at total freedom to make the film about whatever I want and present it in anyway I want to try. My film is about John. John Cossham and his amazingly full, active and inspiring life. See: www.lowcarbonlifestyle.blogspot.com

I was in York filming him and others Fri - Sun last week and came back with 4 hours plus of footage, plenty to be getting on with for the time being, although I need a few more specific things, which I hope will just need a couple of day trips to get done.

My other project is equally creative but on paper rather than film. It's an independent extended project, and like the film, giving me total freedom to choose subject, content and presentation. So far my idea is called Chronicles. It's the journey through a new relationship a disabled woman is having. It's part diary and part narrative, including various characters and a 'twist'.

Mean while life goes on and demands rarely change. This week alone Little Boo has had 3 appointments, one with the Occupational Therapist, one with the Speech Therapist and one with her Medical Consultant. The bad side of this is that she missed assembly this morning, or more specifically being given a sweet at the end of assembly, like the rest of the children! This was the most upsetting thing from her POV. Quite right too!

TeenBoo rarely attends college. It seems little of what I or anyone says has any effect, nor does the bribe of receiving EMA - which he has never received as yet, as he hasn't completed a whole week since Sept!!! In fact unbeknown to me until getting back from York Sun evening, he had stopped going altogether! After talking about this he went in to college on Monday and asked for a second chance, which the college gave him. He just seems to have forgotten it needs to be for more than 1 day, as he hasn't been since.

The stress this causes me can hardly be measured. I have had years of this struggle with him and school. His lack of cooperation has caused so much pressure and difficulty during this time. The constant phone calls, letters, demands to go into school after exclusion periods or time in isolation, education welfare visits, etc, has almost had me at breaking point more than once.

But he is 16 now. He's no longer a school boy and he has to face the consequences of his choices and actions. I have been suggesting he tries to get part time work, to no avail. I can't make him go to college, or get him any work, neither can I fund his social life, nor should he want me to! He has to do these things himself. He has to motivate himself and be pleased as he progresses through life and moves on.

Of course 16 is very young and in many ways he is still a child. (He could never admit this - nor am I allowed to suggest it!) So we struggle through. At times we almost attain harmony and family life of some quality, but in the main, regardless of what I do and my attempts at inclusion, he keeps himself separate from us.

The teen years can be extremely hard - nevertheless he is my responsibility and I love him unconditionally and whilst he stays on 'this side' of my bottom line, there is always a place for him in my family and home. And so it should be.

Blog Action Day - 15th October 2008 - Living on welfare benefits for 15 years

2008-10-14T21:08:00.006Z

For what feels like a lifetime I have needed to live on disability benefits to exist.

It all began when my disability had deteriorated so badly, that being a mum of an energetic little boy AND having a demanding work life was just too much. Something had to give and work had to go. I tried hard to plan for the shock of living on Income Support compared to being a Local Government Principal Officer and all the benefits that came along with having a good salary and steady job. But in reality nothing could prepare me for the shock and contrast of having such a reduced income.

There was little use in worrying about things. I was (and continue to be)severely disabled and it was inevitable that at some point I'd need to depend more upon the welfare state as my condition got worst.

But it's never that simple and I felt very uneasy, and at times, ashamed of being termed a long term 'scrounger' by some, from a society that seemed to continually point the finger and look to blame and shame many groups of people, including those on benefits.

As time went on I began to take a much more hands on approach to my money. I planned carefully, changing to cheaper services for things like gas, electricity and telephone, cutting out coupons for use at the supermarket, working out menus to fit in with weekly offers or particularly those things marked down, saving as little as £1 a week with the local toy shop Christmas Club. Giving up smoking, eating simple food and above all learning the rigours and importance of everyday budgeting and the necessity of household financial planning for next week, the week after that and the week after that. At times this seemed tiresome, but generally I felt my almost military approach enabled me to repay existing debts, whilst having careful thought about what was needed to keep the house warm, clothes on our backs and food on the table.

As the years went on with more debts paid off, I attempted to add the monthly payment of the last paid off debt, to the next one I was prioritising. I tried hard to make a monthly treat allowance for us and I remember how much my son and I looked forward to that treat.

Now 14 years on, I feel I have lost touch with the value of money and particularly what people earn today. Even though I am very careful and make sure the bills get paid, like so many people I end up with much less food money than we need because I've chosen to prioritise other things, like school activities, for example. Don't get me wrong, we always eat, never go hungry and 90% of the time eat healthy stuff too, it's just we can have weeks when the economy range which ordinarily feature heavily on the shopping list, take centre stage - which is fine!

With ILF care charges of more than £80 a week (for disabled people on DLA and Income support), petrol for my motability vehicle for the 11 mile round trip to my daughter's school twice a day, we don't live the high life. On a recent free
5 night holiday to a friend's apartment in Scotland, I had to find over £500 to make up my carer's wages, as this isn't included in my care package. I also find it hard to pay the extra expense of gas for heating, but it's necessary as I have to keep warm to keep well. And after many years of learning to save small amounts of money with the local credit union, I try and save, what I can, when I can, not brill by any means but a standard I want to try and live by.

Even though this blog gives a flavour of my life, how can I possibly suggest we live in poverty? In the UK today we are poor in terms of income and the things we can't possibly afford to do. But our basic needs are met.

In global terms we are wealthy. I can't begin to think of the conditions and situations that other people, but especially disabled people, may live in throughout the world. I can't imagine my own personal situation if it were transferred to another culture, without the backing of an almost 24 hour care package available to me, albeit at what seems to me a massive charge, in the UK.

Yet my comments may offend those who are also living on benefits here. I don't mean to. I know how hard it is to live in this situation long term. I get sleepless nights and worry about how I'm going to pay for this and that. My savings amount to almost nothing.... less than £100. I am totally dependent upon the state and must live their by rules.

It's scary to think of my life like this forever. I am resigned, but reluctantly so. Perhaps it's easier to think of my life as part of a global picture? Maybe it cushions the reality of my position in the UK? Nevertheless, it can't takeaway from the fact that there are no doubt thousands upon thousands of disabled people globally who don't have their needs met, or even a glimpse of the services I have access to (even though I may complain about them!)or the provision of a welfare state, where those in need can receive and be cared for in a society that purports to value life.

Footnote: I don't see disability services and benefits in the UK through rose tinted glasses. Far from it. The reality of the continual and exhausting fight disabled people have in order to gain support and services here in the UK, is all too familiar to the disability community.

Lots of public transport and The Blog Action Day - Poverty = 15th October 2008

2008-10-11T22:25:00.008Z

I've had what feels like a very busy day.

LittleBoo has gone to Julie-ulies for the weekend and was collected this morning, so I was free and had decided to get in me leccie wheelchair so PA (carer) Zoe and I could go on a journey. We took a bus, a train, a bus, a wheel and spent the afternoon with John. He had a gig and it was good to see the kids and adults respond to the hard work he put in. After this Zoe and I walked into town and I managed to get hold of some DVDs I meant to get last time I was in this neck of the woods.

John joined us and Zoe headed back to get an earlier train. We had a lovely veggie meal, much laughter, conversation catching up on each others lives, we began to work on planning my Uni film project. Time ran out and we rushed off to the station where the 19.44 train arrived to take me home. Neither of us could be described as romantic soppys, but saying goodbye always feels inadequate when we've still so much more to talk about. Such is life.

One thing we did talk about was Blog Action Day 2008 - Poverty. This is a one day event where anybody with a blog is asked to write about poverty this Wednesday 15th October. People all over the world are expected to take part. I've registered and I'm intending to write about living on disability welfare/benefits for the past 14 years or so.

LittleBoo and Cons Immunologist.

2008-10-05T21:04:00.002Z

LittleBoo continues to just get on with it. I love her style.

We saw her Consultant Neurologist last week and she told us that in all her medical career, she has never come across a case of Chicken Pox as severe as LBs, except once in a new born baby whose mother had immunology problems.

Because of this she is talking to the Immunology Consultant and wants LB to undertake investigations to see if there is an underlying cause for the Chicken Pox et al , including the last 5 - 6 weeks of 'little' infections. It maybe the Immu Cons doesn't feel it's necessary, but I'm so glad the Neuro Cons is taking this route.

Of course I hope it comes to nothing but I'd just like to know there's nothing else going on.

New semester, new colours.

2008-10-05T16:29:00.003Z

I love October. The new semester starts and my journey through higher education is formalised yet again. Potential is infinite and only limited by my own lack of width, depth or vision. It's still hard to believe that I'm privileged enough to be studying at one of the world's greatest Unis. But here I am and loving every moment of it.

The possibility of new beginnings always gets to me. For years I've loved seeing people sign up for their own new beginning. For some it will add to their already full life and compliment their existing learning and knowledge, enriching their life. For others it will be a life changing process, where they'll never look back and their lives will take off in directions never expected by anyone, least of all themselves.

Before I was studying I always tried to do something new around this time year. It was rarely of great significance but it was always an act of hope and a promise to partake in the world at the level 'we' met each other. I've never really given up on this idea and this year is no exception.

So....................it's time to decorate my living room. That's all, nothing earth shattering or involving rocket science! The present style and colours just aren't me at all and I'm in a place where I need my house to begin to reflect who I am, my beliefs and interests. I need to be able to relax in a space that is sympathetic to that happening, so I can regularly transfer from my wheelchair... and actually consciously relax in the room I barely spend any time in so far.

The colours I've chosen may seem a little 'confused' to others. But I'm certain the room will look wonderfully warm and inviting. I'm hoping to get a recliner chair which I can sit in comfortably, without the increased pain I feel when sitting on our current sofa.

The cans of paint are on the table, the wallpaper has been ordered and the curtains need choosing. Hopefully in the not too distant future the room, not yet started, will be finished! My optimism may out shine the number of volunteers I have to (help) do the painting, etc, so far, but I truly believe the PAs, myself and whoever else, will get the job done...... and a grand job it'll be too. Watch this space - photos will follow!

Me and Dawn Porter on Polyamory.

2008-10-01T22:55:00.004Z

It's coincidental that on Sunday I wrote on my blog about being polyamorous for the first time, only a few days before Tuesday's Dawn Porter programme about open relationships, free love and polyamory. I had looked forward to watching the programme. I had hoped I'd learn something from it and in one way I did. I learnt that being poly to me is not how Dawn's prog represented it.

Not that it was a bad programme. It was well made, Dawn was cool and I was interested in it. But to me it seemed to show the extremes of polyamory or maybe some of the extremes. I guess if Dawn, or any other documentary film maker, was making a programme about monogamy, it would likely show the extremes, or minority interests or activities of that too. A cynic might say that would make far better viewing than hum drum of ordinary everyday monogamy.

But I feel the programme was misleading. It didn't show how I imagine the majority of poly people live, day in, day out. There was little to suggest that being poly was anything other than being open for sex, with anyone, anytime! Of course there are going to be Poly people like this, just as there are mono peoplke too but it seems to me that this couldn't be further from the truth for many people, who are in committed or long term poly relationships - or maybe just happy with their situation the way it is.

As for me, my relationship is great fun and good. We are both enjoying it for what it is now - a 'young' secondary relationship. I feel happy about it being a secondary relationship. It suits my life and where am now and I have the utmost respect for his primary partner - who will always be prioritised above me, and rightly so. But when he's not around - the majority of the time - I'm not immediately looking for the next man or woman, or even men and women, to have sex with! It just isn't like that for me!

Apart from anything else, my life isn't only focused on being Poly. I engage with the world in many ways, all the time. Of course I wouldn't define myself as Poly if I didn't feel I wanted to have more than one lover in my life. But those people would be people I'd want to establish friendship and trust with. I'd want to build on that before knowing from my 'head' that I wanted to have the relationship my 'lusting heart' was wanting to have with them. I can see how the commune Dawn visited in Germany has some appeals, especially to an ageing hippy like myself, but it seems it wouldn't include engagement with the real world.

Such a specialist insular community like this is fine, but I guess for me (and no doubt other polys and monos), the idea is almost in opposition to ordinary local communities, for example, the majority of people who live on council estates, residential areas in villages, towns and cities, coming together and learning to accept each other and each others differences, and learning to live and share resources together, within the wider world.

That's the world I want to live in.

Scotland, Uni, lovers, life changes and contentment.

2008-09-28T11:10:00.007Z

So I got home on Friday from Scotland. Apart for the journeys, where my little helper, 'prescribed Valium' held my hand all the way, (ridiculous I know, but I find fast car journeys hard), the rest of the time was great.

The holiday mainly centred around LB who enjoyed the sunshine, the beach, the nature things we went to and the activities particularly aimed at little ones, like 'straw play' as opposed to the 'soft play' we townies indulge them in.

The first night we were there I sat alone in the magnificant lounge with high ceilings - must be 20 feet from floor to ceiling at least! - and almost felt like weeping when I realised how good it was that my life has moved on since I was there the year before and made such huge life changing decisions.

Looking back it was so good to move on from the platonic yet unhealthy and intense relationship I had with M. Resigning from the disability charity board and not doing the unpaid work I did for them, was the right decision too.

M and I were close friends but our friendship was not strong enough to survive my challenges to, and resignation from, the Board. I never really understood why he ended our friendship . Of course he's a man, and they are wired differently to women there's no doubt, so in some ways understanding isn't necessary, but i would've like to have known. So perhaps M couldn't forgive me because I resigned mid meeting and caused unnecessary melodrama and ripples? (not the best way to resign by any means). Maybe he felt personally let down, or that my challenges to the board were actually directed at him as Chair? I'll never know because he couldn't or wouldn't talk. A short time later, in fact 2 days before my Scottish holiday last year when he brought back my house keys and other things he'd borrowed, he called me a 'purist.' I think he probably said it as a negative thing, yet to this disability activist of some 30 years or so, it was, and is, the greatest compliment! So last Sunday evening, pondering briefly on the 'M-and -Board -O -Gate' I knew I'd made the right decision to move on. But it was far far harder at the time, as I was so emotionally 'invested' in the everything.

Yet this purist will always be passionate about disability equality issues even though last year I decided it wasn't right after all to set up another disability group for families with children with disabilities, which had been my intention when I left the other Board. The time was right to do something completely different, it was time for me to do something for me, especially after having 4+ years of concentrating on LB and all the things her disability needed. So I decided there and then, in the room with the magnificent high ceilings and vista, to widen my personal viewpoint and without further ado, sign up for Uni!

And there I was, 1 year on and 60 credits later, waiting to start the second year of my level one modules (I've allowed myself the luxury of studying part time). It's certainly an accomplishment and something I never thought would happen. Yet it's already changing my life! It was definitely right to choose to study. I am engrossed in it and I can't believe how much there is to learn and how Uni is a world within the world, yet continually impacts on the world.

Thankfully my confidence is returning after approx 5 years of living without it. I never thought it would come back. I can't tell you how good it feels to be the me I was before it was knocked out of me. In fact I'm not that me, I'm the me who has come out of the other side of all the traumas and very difficult times that happened to me during those times. The depression is still difficult on a regular basis, but manageable.

I haven't solved my weight problem yet.

I haven't sorted out my phobia of going in to hospital and getting my now enormous hernia repaired.

I was given an NHS electric wheelchair which has enabled me to get out and about on my own, using the bus, the tram and train! Independent am I! I can't tell you how it feels. I love it. I feel like the world is there for the taking!

I'm greening nicely - although there's never room for complacency. It feels good and is infectious too. I see others making small changes in their lives too and we all encourage each other. We need a green pandemic!

Many years ago, the hippy I am, wanted to live in an open relationship but even though some people I met said they believed or agreed with the idea they were either just playing at it, changed their minds or maybe it just meant little/nothing to them. Then in April I re-met John, a Green who also lives in Yorkshire. We became friends and to my utter surprise shortly after, started a relationship.

It's always been my ideal to be able to live with honesty and integrity in an open relationship, which nowadays seems fashionable to call Polyamory. John and I are in a relationship which is Polyamorous, or Poly, for short. It has been a huge relief to find someone who believes in and takes this seriously. His primary partner likes me too and we get on well. I know it's possible that some people may find my decision hard, but I need to be honest about who I am and how I want to live.

In the end, in a situation where if all those involved are open and honest, and can talk with each other about how they're feeling, even if they disagree at times, and no one is getting hurt - it works well. But I believe strongly that all involved have to understand, agree with and keep to the main 'rules or ideas' of behaviour, however formal that might seem. No doubt distress and pain would only follow a person who had their own 'rules and ideas' in contradiction to the others.

Just to be clear, I'm having a relationship with John, that involves John and me - no one else. John and I enjoy our gentle and happy relationship. It's good to spend time together talking, laughing, sharing ideas, thoughts, opinions, debating issues, loving and caring for each other, learning from each other, watching tv, having a meal and just being ourselves together. I respect our relationship and understand and feel happy about the context of it. The hippy I still am, is happy. All is good.

So last Sunday evening as I looked at the intricate plaster work on the magnificent high ceiling and for yet another time stared in awe at the power of the ocean, my eyes filled with tears because I felt a real contentment with my life (not all of it - but most of it). This feels something new to me and is a reflection of the journey my life continues to take

What a year!! It feels a little frightening to think what I might be writing next year, after my holiday in Scotland!.

Toilet I have visited today....

2008-09-18T19:53:00.002Z

It's not exactly the usual thing I post about but I was amazed after spending hours today in 3 different city hospitals just how inadequate toilet facilites for severely disabled people.

Toilet number 1 = no seat. Messy and smelly.

Toilet number 2 = cubicle states suitable for wheelchair user, but unable to close the door.... and I hadn't got my foot plates on!

Toilet number 3 = (I was crossing my legs - and other things - by now, well I can't physically do that but I needed to!) again, no seat!

What's going on!!!!!!!!!!!!

It's Autumn - part 2

2008-09-16T09:50:00.004Z

I feel like I'm doing more than I did. I guess to make a list will help me audit how things have changed.

I nearly always refuse plastic bags and have reusable ones to hand. (So even though I was so rude about them, I do use jute and non bleached cotton bags after all - and I quite like them!!!! hahahahaha)

I use public transport more and more, including when I'm on my own. This has been a huge step for me and I love it. I use both the tram and buses locally and it feels so good, not just from an environmental or independence POV, but because years ago when I was an active disability campaigner, one of the things disabled people tirelessly campaigned for was an integrated public transport system. At that point there were perhaps 1 or 2 buses doing return journeys into the city centre here and the joke was that if you missed the bus home, you'd have to wait a week! Now it's probably no more than minutes. People couldn't believe disabled people's demands which were considered to be outlandish and unrealistic, as well as financially impossible! Just look now..... it's almost EVERY bus! Wow, what an achievement!

But back to my carbon footprint!

I'm far more aware of how much electricity and gas I use, as well as how many miles my car travels each week, as I record the readings each week. It's a good exercise to do and keeps me on my toes to save, save, save. I'm constantly switching lights and appliances off throughout the house, whereas before I just left them on. I also turn things off everywhere else too, including an accessible toilet I 'met' last week, which made me wonder if it was actually useful, as the next person to use it might not be able to switch it on again.... To record my utility use I use http://www.thecarbonaccount.com/ It's very easy to set up your own account and keep tabs on what you're actually using. My carbon footprint is not my personal one, it reflects my whole household, incl PAs - and it's too high!

I am using the oven more carefully and attempting to 'batch' cook to utilise the other shelves not usually used. I already use a three tier steamer on the hob, for my veggies.

I'm recycling all the usual stuff.

I've rejigged my budget and allow an amount each month for eco products. So I buy eco products for household cleaning and laundry etc

I've started washing clothes, etc that aren't 'dirty', without any detergents at all. I'm convinced there's enough residue of soaps already in the machine and in any case if it's not dirty, it doesn't need soap, just freshening up.

I'm also ensuring that we don't automatically put everything in the laundry basket, but checking for stains and whiffs to see if it really needs to be washed after just being worn once.

I' ve started using 'balls' in my tumble drier but I'm also trying to just hang the washing up rather than use the tumble drier if at all possible.

I started using 'balls' in my washer but they broke very quickly. I got them via LB's nursery and they were exceptionally cheap.... it's not put me off trying another brand though. All suggestions welcomed!

I would LOVE to have a wood burning stove. It's kind of a little dream of mine. My lovely friend John has TWO!? - he'd have to, wouldn't he! Some women I know here have one. Yesterday I had a meeting with an amazing Green I'd not met before, an 86 year old Professor - an active Green for decades, and when it wasn't even popular and probably seen as totally wacky - he has a wood burning stove too. I WANT ONE!!! Anyhow, that's for the future, as is looking at different ways of heating water et al.

Sharing and giving away - I'm a member of freecycle and the Prof and I are at the beginning of hopefully setting up a Green Party thing called Greenshare, where members and supporters have access to a site where they can see what other members are happy to lend out for a given time. It's a great idea and already established in York. It's just another way to encourage each other to share and get away from individualistic consumerism.

I do have problems though..... I find it hard not to buy books. I love books and although I read loads online, there's nothing quite like having a book in your hands and reading it! And then being able to go to the shelf and pick it up again, anytime.

I also don't fly but primarily because I don't have the money to do so. It would be so easy to say it's for green reasons and sit there smugly, leaving people non the wiser! If I were in a different financial situation where I could choose whether to, or not, what would I choose? Hand on heart I'd like to say, 'Me fly? No way!' But I'm not sure. I love hot sun too. Ironic isn't it?

Anyhow that's it for now. Change is hard.... the challenge though is refreshing.

I've not included anything about gardening or composting. Things are in the pipeline there, incl finding out yesterday that there is a wheelchair accessible, raised bed allotment, just waiting for a wheelchair user to use...... and 'they' couldn't find anyone! 'Excuse me, here I am!!!!' Well maybe. I haven't seen it yet. I'll keep you posted on developments. In the meantime..... carrots here I come..... hahahahaha ;-)

Free Annociate

2008-09-13T19:40:00.003Z

Please click on the link below and if you feel able to support this urgent campaign follow the suggestions there. Thank you

http://freeannociate.blogspot.com/

It's Autumn

2008-09-12T14:00:00.003Z

... and that's fine.

Whilst my favourite season is summer, I love the light and colours of Autumn too. I love the evenings drawing in and being able to close the curtains and blinds and if I'm staying in, getting all snug and relaxed. It's a wonderfully ambled start and reminder that the months of winter will surely follow and with them and because of them, new growth and life in the Spring.

The circle of life, a never ending lesson of taking care of this world and remembering that we are only very temporary custodians of it. This is more and more deeply on my mind nowadays and as I attempt on a daily basis to become a 'better' custodian of this world and how I use it, my knowledge and desire grows to do just that. I feel a real sense of urgency that we need to stop trying to 'out green each other', as individuals, corporate business', retail and governments - and begin to understand that non bleached cotton or jute bags aren't fashion statements - or enough..... we all need to do more! I need to do more!

I'm beginning to accept that my carbon footprint will necessarily have to be larger than I'd prefer because of my disability and disability needs. But far from being complacent, this knowledge inspires me to do more of what I can do.

more to follow....

Tears before the bell went!

2008-09-03T12:16:00.003Z

We arrived at school in good time so we could go and talk with the Head Teacher. It felt so ordinary. It felt good and I felt relieved.

LB had decided to take control of her own personal care and so I'd organised a discrete 'just in case' bag, with wipes, gloves, nappies, creams, clothes and lovely refreshing smelly stuff - after previous discussion with the Head, but without LB knowing. I certainly don't want her to feel undermined, and you never know being back with all her friends maybe just the incentive she needs to make the extra effort and hopefully say goodbye to nappies forever. Fingers crossed on that one.

So we mingled through the yard and kids and adults kept coming up to us and hugging LB. Some mums came over and gave me a hug and a kiss. By the time we got to the cloakroom I think LB was overwhelmed with the welcome she received. I was certainly beginning to find it hard to keep it together.

Everyone more or less expressed the same sentiment of how worried they'd been about her and been thinking of, praying for or just sending positive vibes to us all. Some mums and a grandma had tears in their eyes and as Janet, my PA and I went off to the office to pay for this and that, I felt really pleased that LB is in a school where people, many of whom I don't really know, care for her so very much. What more could I ask for?

Then one of the support workers stopped to say hello and chat about how things are with LB and me, telling me she knew what it was like to have a child in Intensive care and very ill.... and that was it.... I just cried and cried. I'm absolutely fine. I came home and I've been crying all morning, while I'm working, catching up with some Uni stuff et al.

It had to come. I've held myself together for weeks and weeks. I know the nurses on the ward kept telling me it was OK to cry, but I just couldn't, except once or twice when things were exceptionally bad or looked grim.

It's so obvious that today is the day for my tears. It's all over. She didn't died, she fought and survived - thank God. But I had to stay strong, however I felt inside. Sometimes it really worried me. I couldn't let anyone touch or hug me. I had to be strong for her because I am her mummy. The most important person in her life now. She doesn't have anyone else who shares that level of responsibility. It was all on my shoulders, there was no choice, I had to be strong.

And the only way I stayed strong was from the visits, messages, cards, calls and texts from my friends and family. Thank you. And today, I hope big time, really big time, that this is it, she IS well. Yes the Consultant is still keeping a close eye on her and naturally there are somethings that still need to be taken into account, but as long as they don't involve hypoproteiniemia, anti biotics, fevers and emergency hospital admissions/visits, I think she's, actually I mean we've, MADE IT.

My tears are for the exhaustion, fear, happiness and joy. Quite healthy really.

More later..

This is the more later.............

I think LB had a really good day but like many children she's told me very little. On the 'personal care' front she needed more support than expected. So far the school is fine about it.

She enjoyed her lunch, but told me no one played with her at play or lunchtime. It's only day one but she went through this before and became very distressed. I'm sure this will get better as the children begin to settle in again.

But she was excited on hearing about a touring African dance and arts group visiting school next week.

I played with her from end of school to bed time and as usual she chose to play her favourite game of the moment - hospitals!!!! In this version she plays her fav nurse Carly!

New starts.

2008-09-02T22:14:00.003Z

I'm just human, but even so I feel slightly guilty that I'm so pleased that LB is going back to school tomorrow!

I had a great conversation with the Head Teacher yesterday and she was extremely helpful and flexible about LB returning. It will do LB immense good to be back in an ordinary routine, with clear direction and children her own age around her. She has already indicated that she is looking forward to caring for the little ones who start in reception this term.

Teenboy starts college tomorrow too. Like usual he is unprepared and however hard I've attempted to support/help/facilitate/nag/despair it makes little, if any difference. I am hopeful that he will find college more enjoyable than school. It would be wonderful for him to meet new people and make new friends.

They say things come in threes, so what's my new start? Well I don't really have one yet this will be the first time since the end of June, that I'm not looking after my daughter. Hopefully it will be the beginning of a time when my son becomes more settled.

Quite selfishly it will be a time when I can start having regular 'me time' again. I can have the house to myself and play my music loud! And eat a treat without everyone asking for one! I can meet up with my lover and spend some hours loving, rather than thinking about when we might be loving again! I can study, read, listen, question, watch, write, reply, research and all those things I have to do as a student.

However much I love my kids, it's a time when I can be thankful they're both here alive and starting new stages in their lives, and know that I am more than mum, and as such can give them much more because I have the freedom that 'me time' gives me. Thank goodness for new starts.

Oh man...here we go again!

2008-08-30T00:30:00.003Z

LB's Consultant rang me today. The urine test has grown a bug. So he's organised for yet more antibiotics, which my father collected from the hospital on my behalf.

This kid has to have another 7 day course and when she found out she had another infection she became v upset and I don't blame her. The Cons couldn't believe that she hasn't any presenting symptoms. LB assured both of us that she hasn't any pain or sensation symptoms. This is great for her but makes me wonder what, if anything, is going on. I'm not implying she doesn't have an infection in water/bladder but wonder if her Cerebral Palsy is affecting her feeling it? If so, this could make sense of why she's finding nappies hard to move on from. CP does affect toileting with some ppl. But she'd got out of daytime nappies in Jan and night time ones, I think in May... but needed them both day and night again when she became ill in July.

I've said it before in another post she's only had 6 days without antibiotics (and presumably infection) between 5th July and now, the 30th Aug - that seems a very short time. It worries me considerably - not that she's actually had so much medication, but that she's needed it and seems to continue to do so. What next? What can I do to build her up? The docs tell me all her levels are ok apart from HB which is still reasonably low - but even then it's vastly better than when she was an in patient. But she seems to be having non stop infections.

I hope the last infection was just an ear infection and this one is just a water/bladder one and not the continuation of something more serious.

LB saw the top man.

2008-08-28T18:32:00.010Z

LB had an appointment with her Consultant whom we both really like. His father was my Consultant 'orthopod' when I was a child!

LB's weight is back to normal and we noted she had grown 20cm since May 2006 - I think that's 8 inches! Her blood pressure was back to normal, which was good. Her ear infection is getting better. Her wound is healing well.

The Consultant talked about how ill LB had been and that it will take more time for her to regain her pre illness strength. Her school term is about to begin and she is keen to get back to her studies and friends. He was happy about that as long as the school is flexible and responds to how she is. I know they will - well I'm sure they will, I haven't spoken to them yet! She's not out of nappies yet. It's an issue but one all the professionals believe should be dealt with slowly. I guess all in the fullness of time - but it might mean carers have to b e with her at school - I don't know.

We talked about the Hypoproteineimia (sp?). He feels it happened because she was so ill and hadn't eaten for such a long time. I asked if that meant it was a 'one-off' or if he felt there was an underlying cause. He said he couldn't rule it out completely, but he thought it unlikely.

LB had a urine test which unfortunately showed protein and white blood cells . A sample has been sent off to see if it grows anything. It may, or it may not. If it does she will be back on antibiotics. This will mean that since 5th July she will have only been off anti biotics for around 6 days! But she'll need them, so she'll have to take them. However, it seems that she is having infection after infection still. And the anti bio stats could be interpreted as 6 days without infection since 5th July. Poor kid.

So the hosp will be in touch if they need to be and it's best not to worry about it as there's nothing I can gain by doing so. The Consultant also told me that he sees about 1 - 2 children a year who have such severe Chicken Pox. It is unusual and more so with such bad infections.

Her next visit will be in 2 months and she may be discharged then, if, as her Consultant hopes, she has fully recovered.

And apart from the importance of the visit, from my point of view it was quite strange seeing the son of the father sitting at the desk, in the building where I was treated as a child. As I sat there I could see the father in the son, yet with a major changes. As a child I looked up to the father so much during that time, thirty five + years ago. I was a 'well brought up child', and somehow, but understandably, I projected Dr Snr into an anthropomorphic role. Somehow he was a representation of the Deity, my god, the one who would make me well and whole. Of course the deity was under human form, with human attributes, affections - and failures.

LB - moving forward!

2008-08-26T03:08:00.005Z

Time passes so quickly just now. LB seems to be doing quite well physically now, although she does have an ear infection.

We have noticed a big shift in her behaviour from pre illness to post illness. She is very demanding and has had a huge amount of attention for weeks. For sometime we have been trying to encourage her positive behaviour but sadly with limited success.

So today we have taken things one step further and designed a daily star chart to compliment her long term one. Her daily one means collecting 8 stars in a given 24 hour period. These are for noticeable good behaviour. For example, pleases and thank yous, concentrating on, and helping with, getting dressed, not whining and moaning when told no, doing something the first time she is asked, etc, etc.

These may seem like quite simple things but if she's 'not doing' all of these, or a selection of them, it adds up to a hard time for everyone. Quite simply she needs to know she is loved just as much when she is well, as when she ill, and that doesn't mean we, or me particularly, can spend all the time in the day focused just on her.

With the help of the PAs, I've just about got her bedtime routine back in place at the necessary time. Unfortunately she is refusing to take a bath, as she is scared. So since she's been in hospital, 5th July, she's only had 1 bath and 1.5 showers. Obviously she washed everyday but it's not the same.

With school just over a week away, she is still in nappies and when we have tried to use pants , it hasn't been too successful. Having said that in reception class all the children visited the toilet at regular intervals, which made life much easier. I'm assuming this is the same in Year 1. You may consider I'm not encouraging her enough but she's only wanting to wear nappies and I'm advised not to put pressure on her for the time being. We'll see. I can't think of anything nicer than this little girl returning to school, healthy, happy and without nappies! But if she needs them, she needs them and we'll have to cross that bridge when it comes.

I would say this is week 2 of having a much more normal type of life. Thank goodness. Of course we need hospitals and are very fortunate to have such first rate services in our wonderful NHS, but I reckon we've had our fill of them!

Thursday 21st August 2008

2008-08-22T00:29:00.003Z

Today has been quite hard. Mainly I reckon because none of us slept very well last night as LB had a really bad night, but on the plus side at least she got off to sleep at more like her normal bedtime - a first since we got home from hosp.

Thankfully I was able to sleep in for a bit this morning and was woken by my disability social worker, Y, ringing, who sorts out my care package. We had a review a couple of weeks ago with the ILF social worker too. Basically there was general agreement that I needed two more nights care. Because of rule changes the Council have to pay something like £300 p week before ILF begin to chip in again . This means that even though I already have a package of 3 nights and 40 hours p week from ILF, for anymore funding from them, the Council has to raise it's care package for me to the £300 mark.

In short it went to Adult Disability Panel and they said NO! They say that the Children's Disability Panel should increase LB's package. Basically it's all politics and silly games. The Children's social worker has already said that her boss wants to cut LB's package - yet there is no change or improvement to warrant this. The boss, for the sake of arguement, let's call her 'shark' doesn't seem to understand that LB has a legal right to have Direct Payments as a way to meet her care needs.

Indeed I'm led to believe that Shark also feels now LB has started school she has less care needs! This doesn't seem thought through as she's actually in school less time than she was at nursery and there are the school holidays too! Previously LB's social worker refused to believe that the school run for LB was around 50 mins. I offered to take her on the route, but she refused to take me up on it.

The potential for stress feels immense - just what I need! The most annoying thing is that when I had my first assessment for ILF they offered me 7 nights a week AND IT WAS ME THAT AT THAT STAGE TURNED IT DOWN. But it was understood by us all that I'd see how things went and could at any point ask for it. I only turned it down as I thought it would be nice to have a couple of evenings without PAs (carers) around. However as time has moved on I realised how good it would be to have those nights, so I waited for the ILF review, not knowing the rules had changed and thought it would just be rubber stamped. I was wrong! Oh dear!

What seems silly to me is that if the Adult Disability Panel agreed their part on MY package taking my weekly care costs to the place where ILF will start to pay, ILF can increase my care hours even more and that would be quite straight forward.

Watch this space!

LB - update - Weds 20th Aug 08

2008-08-20T19:04:00.004Z

Today has gone well apart from tiredness and LB's ear infection.

I'm trying hard to get some normality of routine and structure in her life but know things will get much better when she's back at school, hopefully on 3rd Sept.

We visited the ward this morning and after a bit of a wait the doctor checked LB over. Things were good and her wound is healing well. We were discharged from 'ward attending' and see the Consultant next week in Out Patients next week.

No one answered my questions about Hypoproteiniemia (sp?) or her having another infection so soon. It was suggested i talk with the Consultant next week.

Apart from all that LB is pretty demanding. I mentioned this too and some of the nurses felt her behaviour and clinginess to me is as a direct result of how ill she's been. A bit like she's waited until she's got out of hospital and feels better enough to start kicking out at those she trusts the most, i.e: me and the carers. They said she's probably dealing with many mixed emotions like fear, anger, excitement for example, and can only display this with those she feels safest with.

It probably is right and it seems that what's need is normality. I've been trying hard to provide that and I'm sure that once school starts again things will improve greatly. Let's hope so!

LittleBoo update - Tuesday19th August 2008

2008-08-20T00:04:00.002Z

LB woke up with her left ear discharging. It could only mean an ear infection. She has a history of recurrent and persistent ear infections yet it seems a good few months since her last one.

Due to the resistance she had experienced from the antibiotics prescribed for her ear infections previously her ENT surgeon, the lovely, young, extremely attractive and some what sexy (did I just type that!!) Mr B had said he wanted her to have the antibiotics that finally did the trick and not bother with the others. To this end he had suggested I bring her to A and E, or ring his secretary to organise getting them.

So this I did and his secretary, a lovely woman, was extremely helpful and through discussion she suggested I take LB to A and E, where any of Mr B's team could be called if necessary. After the phone call it struck me that this was yet another infection. She stopped taking antibiotics only a week and a bit ago and over the last few days her voice has become louder and louder. I thought it was to do with her hearing as she does have hearing impairments but it looks like it was due to this ear infection brewing.

I rang the ward she had stayed on to ask if going to A and E was the right thing, or should we visit them instead. (I remembered a doctor telling me that the 3 infections she'd had were being considered as an isolated thing. But if she got more infections they might wish to investigate if there was any reason why she's having them). As we are ward attenders tomorrow after checking with the doc the nurse said we should go to A and E, who could bleep the medical docs as necessary.

So we went to visit A and E and within a short while were leaving with ear drops in hand. Of course we'll be returning tomorrow but thankfully the A and E doctor didn't feel there was any need to refer us to anyone else today. To me that means it's just an ear infection.

Her wound seems to be doing really well too. It'll be good to see what the doctors say tomorrow.

LB update - back from hosp - 13th Aug 08

2008-08-13T15:30:00.003Z

Well thank goodness we're home. So that's the good news.

Here's the story in brief:

We got to the ward and saw the doctor who agreed with me that it was swollen and red. She got her senior doctor to see LB, who concluded that an ultra sound and request for the surgeon to see her was the next action. I asked if it was like LB would be admitted and she said probably. So my head was all over the place trying to arrange things, etc.

The surgeon came promptly and examined her. Like the rest of us he agreed it was red and swollen, but he said it wasn't hot and Littleboo looked well. I told him that the carers and me thought she'd been a little off colour and 'mardy' over the last 48 hours.He said he felt the swelling was due to healing and the granulation process (where have I heard this before!) and nothing more - hopefully. Certainly from his point of view he was persuasive that there was nothing to the contrary presenting today.

But obviously I need to keep a close eye on her as children can go down (and up) very quickly.He said he didn't want her to have anymore antibiotics unless there was a clear reason for her to do so. He also said that he didn't want the open wound dressing anymore either. He felt that she has had so much intervention nature wasn't being given a chance to do her thing. He even said she could have a bath!

So, as promised to LB, we left the ward via the Chapel and she prayed privately (she has more faith than me!) before we went for a sandwich lunch.

I feel totally amazed and uncertain about what we've been told. Obviously I'm really pleased that the docs think she is doing so well. But yet again they have contradicted their previous advice and information.I have been told exactly the opposite of all these things, including the time spans involved. I don't mind what the time spans are, as long as they're right for.

The best thing about it all is that as before I can go back to the ward anytime for them to see her, if I am worried about anything. So I'll continue to keep a good eye on things and take a pic each day of her wound to monitor it. Without that promise, I think I'd feel a little terrified to say the least.

LB and Aliboo update - Tues 12th Aug 08

2008-08-12T23:38:00.002Z

I'm feeling really low this evening. When getting LB ready for bed I noticed her wound area was looking a little swollen and red and I looked at her open wound and it seems to be 'leaking' a quantity of thick yellow/greenish liquid - presumably pus. Thankfully we have to visit the ward for a check up tomorrow in the morning, so I didn't do anything tonight. It was almost 9pm once I'd got her sorted anyhow and she was very upset too.

I feel terrible for her. She has been through so much, too much. The last antibiotics only finished on Monday morning. I can't bear anything else going wrong for her. I don't know what will happen tomorrow, whether she'll be kept in and given iv antibiotics again, or given oral ones. To be honest I don't care as long as she becomes well.

All this is taking its toll. If I could be self indulgent for a minute, I feel swamped by it all. I had just begun to relax thinking we were on the home straights. I'd even more or less stopped writing in the book we made for home, (necessary with 5 carers), of what she'd eaten, drank, time of meds, etc. I'd also bought the kids special treats for having such a difficult time - LB Build a Bear things and TeenBoo new clothes.

I don't fell like I have any strength left. I'm exhausted and have just been trying to keep things going. It feels like each time I manage to relax a little, things just get worse. I feel numb and empty. And then guilty because it feels like I'm not being a good enough mum.

In addition I'm ashamed to say I've been comfort eating through all of this. Of course that means my weight has been and is increasing. Part of me just wants to walk out and get some peace - I won't. This is all too hard and painful for anyone and I feel very alone and isolated. This has been the third time in her short life I have seen her fight for her life. It is agonising for a mum to watch and now she should be getting well not worse.

We've yet to get investigations in to why she got the hypoproteinemia (sp?), which made her so ill while the infections were going on. Was it a one off? Or is there an underlying cause? etc etc. The docs said they are referring her to a specialist once she gets well from the infections I can't pretend it doesn't worry me, I'd be inhuman if it didn't.

Now I've moaned on and on I'll just get on with it. I'm honestly not trying to get attention just totally exasperated by it all. I feel like I've not been able to give my kids any summer and they have had a really hard time. Of course all I want is for her to be strong and well.

LB update - Sunday 10th Aug 08

2008-08-11T00:39:00.003Z

LB woke very early as her pic/long line, seemed to be coming out of her arm. I settled her in bed with me and we slept for a few hours more.

Once the District Nurse came she phoned the ward and once again we set off to see what they wanted to do. The decision was to take it out and LB was very upset and distressed. Again the fear of what was going to happen was greater than what actually happened. Of course that's totally understandable.

LB says her arm feels sore and I guess after having a line in for what must be a month or more, that's just to be expected for a short while.

Well it wasn't planned to take it out but as her wound seems to be doing so well, it feels like progress. The only thing I'm slightly worried about is that when the nurse held gauze over where the area where it was inserted, instead of blood, there was a staining of pus. The nurse sent of the tube to the lab to be tested. So fingers crossed on that one.

After being on the ward we went to have a family lunch together, in the canteen and then LB insisted on going to the chapel to pray. TeenBoo didn't want to go, so amid protests from both sides, I negotiated a compromise of a five mins visit. I've been very interested in how LB's interest in Christianity has developed over the time of her illness. It's fine by me!

LB update - Mon to Fri

2008-08-08T00:29:00.005Z

It's hard to believe that it's Friday already. I am still tired and the last two days fallen asleep 4pm ish until around 8pmish. It's a habit I can't afford to get in to.

LB is doing well. We went back to the hospital as 'ward attenders' and it couldn't have been a worse day to go - the doctors were all changing round. What could have been maybe a visit lasting 1.5 hours, actually took 5.5 hours, with most of the time waiting and doing nothing.

Alarm bells began to ring for me yet again as I realised the hospital and District Nurses views contradicted each other in how to deal with LB's wound. I feel like I'm between a rock and a hard place and totally lost in the middle trying to advocate for my child and get the best treatment, which is hard when one lot say the other lot are doing something wrong, or not as they would wish it done.

Take the Pic line for example, I was clear when we left hospital that needed flushing with Hepsol (sp?) daily when not in use. The District Nurses said it only needed seeing to once a week. I explained what I understood and they rang the ward and unfortunately the nurse they spoke to agreed with them. Yet I KNEW what I'd been told and when we visited the ward on Sunday the sister confirmed this and reconfirmed this again on Wednesday too. This time the protocol was printed out for me to give them which I did.

There was also some question regarding how her wound is being dealt with The District Nurses believe that they should be packing it each day. The hospital don't do that. The DN say it's possible the wound will heal internally in places leaving areas where it's not healed and pus can grow and presumably become abscesses. Great! The hospital say that keeping packing and repacking doesn't help and can actually stop the healing granulation that's needed for a successful heal. Who am I supposed to believe? This is my daughter they are talking about and I'm no medic and can't make the judgment. I'm supposed to be able to trust the medics.

All I know is that I am her advocate and she has been through more than enough.

On a much nicer note I took her to our localish shopping centre to the Build a Bear Workshop. It was time for her treat for being such a brave girl, especially in taking medication each day that she finds unpalatable. She chose a monkey and has called it Roxy. Roxy has a school uniform with school bag, and she is obviously already one of LB's favourites.

Not to forget TeenBoo, I surprised him to a new trendy sweatshirt, T shirt and belt. What's more he actually liked them! The first time for years I've bought him a surprise and he liked it!

We go back to the hospital next Wednesday, or anytime before then, if I'm at all concerned about anything.

Sun 3rd swab test

2008-08-03T21:20:00.003Z

Today we unexpectedly returned to the ward to see the nurses and doctors.

The District Nurse and I agreed that the wound had changed since yesterday and was shiny, redder and wet. The hospital doctor agreed and a swab was taken to see what the bug, if any, is. This will help identitfy if LB is on the right antibiotics or not.

It was great to see the nurses and everyone else too. They were so lovely with LB who was disappointed that although it was lunchtime she wasn't getting a lunch like the other kids! We're due back on the ward for her original appointment on Wednesday, however in the meantime I need to take her back if she stops eating, drinking, playing or gets a raised temperature.

I hope she doesn't and this is just a blip. This girl has got to get well. She's been through far too much and enough is enough.

Getting back to 'normal'

2008-08-01T06:32:00.002Z

Waking up at home for the second morning in a row is good. Yesterday was a good day and last night PA Hannah and I finished off tidying up and putting away the hospital stuff. I went through a months mountain of mail - most of it junk that went straight into recycling or shredding.

Earlier the District Nurse came. She seems lovely and more importantly LB liked her. I'm taking daily photographs of LB's wound in order that we can compare progress if necessary.

.....more later

We're home!!

2008-07-30T16:24:00.001Z

We are home! LittleBoo has a dressed open wound and the nurse is coming in each day to look after her.

PA Janet and I have been sorting out her medication, dressings, etc, etc, etc. We're going to have a very easy evening tonight, with an extremely understated little 'welcome home' tea party in an hour or so..... just LB, TeenBoo, PA Janet and me and then I'm hoping for an early night. I am exhausted. It's hitting home now.

I am just so glad that she has come home - at times I was worried if she would. She's already acting whiney and demanding but what can I expect after she's been in hospital for so long receiving first class care and being spoilt by all and sundry! We can go back to the hospital anytime I feel it's necessary, which is reassuring and in any case go back for a day on the ward in a week - when she may even be able to come off the oral antibiotics!

Anyhow in the meantime there's no rough and tumble!

Home tomorrow - maybe!!!!!

2008-07-29T19:26:00.003Z

It looks like we are going home tomorrow. It was totally unexpected but the docs said this morning she could come off the IV antibiotics and therefore even though she's still rather weak and wobbly compared to normal, she can go home on oral antibiotics.

It's far better for her to be in her home environment with nurses visiting each day. I guess apart from the psychological point of view, it's better from an infection control point of view too as there won't be any children around with other infections, etc.

We have to come back to the ward in a weeks time and have open access before then at any time, if necessary. In addition we have numerous outpatients appointments and have been told that once she is well she will be referred to a different consultant to look into why she 'lost' all her protein, as this was most unexpected.

........more later

This is the more later......

PA Hannah and I went to town and made up some special 'nibbles' treat bags as thank you pressies. So we went round the hospital to drop them off at A and E, and the Intensive Care Unit, and of course one for the nurses on our ward. LB loved giving them the pressies and thanking them all. It was particularly good going to A and E as the Charge Nurse who dealt with LB was there and confirmed that we should just turn up at A and E if I'm at all worried. I know it seems obvious but it's good to know from the staff in A and E themselves that we can just turn up and them see that as good care for LB, rather than a neurotic mum on overdrive.

WARNING : this paragraph includes gory wound details. We were told this evening that her 'release' is subject to the surgeons seeing her. So far, they checked her immediately after the op and the following day, but have only been in contact with the nurses by phone. When changing her dressing today we noticed some solidified white 'pus' which is actually attached to something inside the cavity and couldn't be budged. They took a swab of it, which may take 48 + hours to show results.

Anyhow, I've been photographing the wound every day but it's only my phone camera. From tomorrow I'll be using my D-SLR, which gives a much more accurate picture which I can email to the hosp if necessary for them to see. Also, it will be helpful to show the different nurses that come, so there is a pictorial record of it all.

Well I was supposed to go home and and have a rest night but there seemed so much to do I decided to stay here with PA Hannah. We've thrown out and packed up most things. To finish with we ordered a curry which was delivered promptly. To finish with I decided to have a diet coke, something I haven't had for over 2 years or so. I just fancied one. It was horrible! Just bubbles and a weird, unlikable taste. Thank goodness for water. I know we should never say never but thank goodness for cold, iced water - my favourite drink of all. The nurses have been great getting me chilled wqater many times a day from their staff room, but I can't wait to be home and be able to get it for myself.

LittleBoo update - tonight will be night 24 in hospital.

2008-07-28T19:13:00.002Z

Again I lost my comprehensive post! Duh!!

Here are the brief details of today:

LB is off IV Morphine and IV Fluids.

She has walked more today and been determined to do things

The internal packing has been taken out of the cavity which to a non medic was UGH! and Yuck! However, although she was very upset, she was also brave and resiliant.

The Clown Doctors came today! LB loved them. In fact all the kids always do. I want to be a clown doctor, they are so cool abd bring such laughter and happiness to children who are ill and away from home. Worth their weight in gold.

LB is exhausted and fell to sleep around 6.45pm or there abouts.

I am exhausted and the nurses have lent me a TV and DVD and I'm off to bed to watch a movie.

LittleBoo hospital update - Sun 27th July 08

2008-07-27T21:57:00.002Z

This is our 23rd night here. And it feels like we've been here every single one of those nights. In fact I'm amazed we've not been here longer, it almost feels like forever.

Today, like yesterday, the ward is horrendously hot. It has been hard for LB who has spent most of the day with just a cotton sheet between her back and the plastic covered foam mattress. Sweaty, sweaty sweaty!

LB is still doing well. She's still hooked up for seemingly IV everything and receiving extra Morphine at dressing change time. Talking about dressing changing, it's hard to see and the smell doesn't do too much for me either. It's not that it's off or anything like that, but it's as you'd expect, bloody, which isn't my thing.

Much more importantly she is coping as well as could possibly be expected. She's obviously distressed but often it's more due to the anticipation of what the nurse might be doing rather than the reality.

Bloods had to be taken today and I reckon it's the first time since the jerk that took over 10 minutes to do it, did it. Again she was extremely distressed, but the woman doing it knew exactly how to do it gently and as quickly as possible, as well as knowing how to deal with LB's fear and distress. Two minutes later it was all over and the tears had stopped. We just have to wait for the results, which should come tomorrow (as well as the ones from the abscess) to get a picture of how she is doing from that point of view.

She spent more time in the sensory room today which she enjoyed and also ate well - incl a serving of Sticky Toffee Pudding and custard. All in all, and from a non medics perspective, she seems to be doing well. The docs said that her wound is likely to leak for ages and also take many weeks to heal totally. Obviously she won't be in hospital for all that time, nor be inactive in bed all day at home, but rough and tumble will be out, so we'll have to find the balance. A nurse said that either the District Nurse will come to dress the wound each day or the PAs and me will be shown how to do it ourselves.

I have no idea how long she'll be in hospital for now - hopefully days rather than weeks. No one I ask seems to be able to answer the question OR they give me such contradictory answers it's no use relying on them! And as I'm the kind of person who needs to know what's happening when and where, in every part of my life, this is one thing I have no control of and I have to learn to chill and just take each day at time, and just relax in knowledge that I don't have to be in charge on this one - easier said than done!

LittleBoo update - Saturday 26th July 08

2008-07-26T18:13:00.002Z

We're in our room on the ward and watching the choir prog on BBC1. There's just been a fab Gospel Choir on called Revelation. I love Gospel music. It really lifts my heart and my heart needed lifting, I've felt quite low today.

It's not that LittleBoo's had an awful day but I found it hard to see her coping with having her dressing changed. The wound is packed with a wick dressing that aims to keep the bugs away. But there's a dressing that kind of closes the entrance to the dressing filled cavity which has to be removed. Even with the extra Morphine she was given it hurt her considerably, which was very hard to see, especially when she kept saying she wasn't brave - which made me fight the tears back, as I find it hard to believe she doesn't know how brave she is in all of this.

Once she settled down again I went for some lunch and TeenBoo appeared unexpectedly which was lovely as the food wasn't particularly interesting. We headed back to the ward and took LittleBoo with Nurse C to the 'sensory' room which is comprehensively equipped with great equipment, especially for children with neuro type disabilities. She loved it.

It's very hot here and we're lucky enough to have a fan in our tiny room. We were offered to move to a larger 2 bed room at the other end of the ward. It's a special room that's pressurised to keep germs and bugs in and used for children with very serious infections who need more than the normal barrier nursing.

I checked the room out but felt it's was such a long way from the nurse's station. Also, we would need to move back in a heartbeat if someone was admitted who needed it, unlikely though it may be. But in such circumstances there may not be the size of room we need to 'squash' 2 beds in to. The other rooms are even smaller than this one and there's no way we'd both fit in. So unless they tell us we're here for many more weeks (which I'm sure they won't) we're staying put.

Well I'm tired and achy. LB understandably wants me with her all the time and it's hard work, especially when I'm supporting her with treatment or whatever and 'leaning' in a precarious position for my hips, arms or back for sometime. Obviously I intend not to complain as she needs me and that's that - but I'm often not just biting my tongue but gritting my teeth and playing mind games with myself, in order that I can cope physically and give her the support she so rightly needs and deserves.

So looking forward to our holiday in Edinburgh. Can't wait!

LittleBoo update - 25th July 08

2008-07-25T13:06:00.006Z

LB had a big smile on her face after a peaceful sleep and a lie in until 9am this morning!

The redness seem to have subsided dramatically and she feels much better. She is so much more like her usual self and I am hopeful that this time we really are on the road to a sustainable mend.

Her sense of fun has reared it's welcome head at last and she has been having fun with the nurses who are looking after her from a holistic care perception. Mind you she has nurses she calls 'crackers nurses' who makes her laugh by tickling her and being very playful! Nurse C and K are almost fully qualified Staff Nurses and like the other student nurses who applied, will find out if they have full time permanent jobs at this hospital, later this afternoon. Naturally they're apprehensive but I think (and hope) that they will be successful. I'm pretty much an 'expert' patient after all these years and it's obvious to me that these students know there stuff, work hard and have a great approach to their professional work!! In other words it would be the hospital's loss not to employ them. They do the NHS proud.

Back to LB. The surgeon spoke to me this morning and said the packed cavity is rather large, moving upwards towards her chest and outwards towards her umbilicus. It's hard to believe this wasn't diagnosed before, but there's little point in going back through that. Today the problem is hopefully solved.

One of my concerns is that an abscess grew at all. LB was already taking a cocktail of IV anti bio tics for 18 days and then went on to oral. It was sometime during this period that the redness started to appear - checking back on my blog it was first noted last Sunday.

My concern is that she was unable to fight whatever bug it was after all those antibiotics and very quickly grew a large abscess. She seems very vulnerable. That's why she got Cellulitis after the Chicken Pox. It's hard to know how depleted her system has been and unable to cope with these big infections. She is on a high protein diet and the Dietitian says it's very easy to lose the stored supplies when some one's ill and takes much much longer to build them up again. Let's hope they build up faster than expected.

The physios have just been and are coming back shortly to walk LB. She doesn't get much rest! - more later..

The 'more later'

LB is fast asleep and has been since around 6pmish. She must feel very tired. Despite the ward being a little like a hot house that grows tropical plants, LB managed to walk to the nurses station and back again with my help, carefully watched by the physio Helen. Once back near her room Nurse C and Helen helped LB work out how to get from her sitting on a mat on the floor to standing - safely.

She did it but it almost seemed too much to me, it was obvious she was tired and had little confidence. But confidence grows with practice. Once back in bed she rested quietly, having tea and falling to sleep whilst I'd gone to get mine.

I was a little concerned to notice redness round her dressing and managed to get her day nurse to check my eyes weren't mistaken, before she went off duty. Unfortunately I was right. We showed the night nurse and now I feel confident that she knows it wasn't like that before and can see for herself if it deteriorates over night. Obviously, I hope and pray that it doesn't.

Although it's only 9pm, it feels like the end of the day and I'm about to go to bed to read and try to relax some.

But finally, Nurses C and K both got jobs here! K was a little disappointed as hers is on a different ward - but I'm really pleased for both them. They deserve it and more to the point the NHS is lucky to have them!

AND I JUST REMEMBERED: LB's Deputy Head rang today and I told him our friends in Edinburgh had offered us the use of theirwheelchair accessible apartment (right by the sea!) while they are away in Sept. I asked him if it was OK to assume that I could take LB out of school and go on holiday? The man fro Del Monte said...... 'YES' I can't wait and hope we get good weather in Sept as LB deserves it!

LittleBoo update - 24th July - These things are sent to try us

2008-07-24T16:36:00.004Z

The Dermatology nurse looked at LB's side, she got the medical doc. He called the surgeon and LB was placed on the emergency list for dealing with a huge abcsess.

She went down to theatre at 3pm. I went down to meet her in recovery at 4.15pm and we were back on the ward by 4.45pm. It's now 5.45pm and LB is sitting up eating toast!

The surgeon has spoken to me and said he made a 4cm incision and collected more than 100ml of pus from it - ok I know TMI!

Thank goodness someone listened to me and got the Dermatology nurse. You know from my previous blog entries I've been worried about this so much. I apologised to the nurses for 'going on about it' so much and they said mums always know when there's something wrong with their kids. I'm just glad they listened to me in the end before the abscess burst.

Anyhow home on Monday is no longer on the cards. She has a morphine pump, IV antibiotics and IV fluids. Apart from that the wound is packed with two lots of packing to encourage healing from inside.

LittleBoo update - Wednesday 23rd July 08

2008-07-23T21:44:00.005Z

So we survived another day at the hospital. It drives me nuts sometimes, which I feel must be a good thing and show that I'm reasonably human!

I slept in until 11.30am. TeenBoo woke me up with a, 'Don't you realise what time it is?', greeting. I don't think we changed bodies in the night but I certainly felt like replying with some of the choice things he usually says to me. Instead though, I got up and proceeded to wash, dress, eat, to some chilled music, and got to the hospital.

LittleBoo had had the usual eventful morning and was thrilled to see me, waiting with the physios by the ward door, to show me she had walked that far AND had her Nasal Gastric tube out. She looked particularly well and cool in the half price clothes I bought her yesterday. She slowly walked back to her room with much assistance from the physios who helped her on her bed for a rest.

PA Janet who met me at the car park and got me up to the ward proceeded to tell me all the happenings of the morning and that LB may be coming home on Monday!!! YEAH!!!! Raj, the doc needed to chat with me and he arrived later in the afternoon when my parents were here. He told us it won't necessarily be Monday, but could be a day or few later. They want to work with me to make sure I'm totally comfortable with everything and can manage all that's needed to be managed.

I feel happy with this arrangement as I can see how weak LB is in comparison to her pre illness state. I certainly can't lift her anymore and already have a massive umbilical hernia caused by lifting her months and months ago. Nor can I help her walk the way the Physios do. I have to hold her arms and wheel backwards in my chair. We tried this once today and she was terrified. :-( Poor little love. I asked the Physios to help 'us' practice together in a way that they see as safe for LB and me.

After tea the nurse came and changed LB's dressing. AT LAST someone agrees with me - the swelling and redness is worse. She has written in the handover book about the docs actually seeing the area before a dressing change tomorrow, as she is not happy about it. LB also had a temp of 38.6 this pm too. Calpol soon sorted it but the two things together - redness/swelling and a temp might mean the main antibiotics need to be given for longer.

She still needs to eat more protein and I've been busily researching what kind of veggie things are highest in protein. For example, is the 3 gms of protein in a soya dessert she loves a good/bad, or maybe high or low, source of protein? Or would it need to be 15 gms to be a 'good source of protein'? I have no idea. For years I've learnt about food nutrition but only from the point of view of a healthy eater or weight reduction diet.

Anyhow that's about it for today.

LittleBoo update - Tuesday 23rd July 08

2008-07-22T23:38:00.002Z

Another day has passed and LittleBoo is asleep in her hospital bed. Because it's Tuesday night I'm home as I have Tuesday and Thursday nights 'off' in order to try and catch up with things at home, including TeenBoo, and sleep of course. Far from being abandoned LB has one of our PAs with her and whilst I'd never leave her if she'd being having a bad day, I desperately need some space and time to to try to relax and touch base. It rarely works though. Most of this evening I've been cleaning, washing, ironing, cleaning the fish out, looking after the cats, etc. I didn't have tea until 10pm.

LB had the normal array of visitors
- the physio, OT, dermatology nurse, play worker, doctors and the phlebotamist whom I wasn't impressed with one little bit, to such an extent that I actually said I didn't want him to take blood from her again. He was useless. He must have taken between 10 - 15 minutes to get the few drops needed for a paediatric blood test. It normally takes the usual phlebotomist 2 mins max. LB was terribly upset and cried, it can't be nice having so much blood taken everyday and to have some incompetent jerk make such a huge mess of it, is just too much for a five year old to have to put up with.

It seems the docs need LB to drink much more. I don't really understand why she doesn't, we've all been encouraging her. And she needs to eat a high protein diet still. Today the menu for high protein veggies offered lentil bolagnaise which she disliked and for her evening meal a baked potato with beans and cheese, which she loved. Rather than fruit, her snacks need to be protein based too. So today she had some cubed cheese and sultanas - heavy on the cheese! Any ideas for high protein veggie snacks or meals would be really appreciated!

After LB's lunch two of the nurses changed into civvies (infection control) and we all took the trip across the road to the museum. LB loved it. The culmination of our visit included a workshop, which she attended with the nurses while PA Julie and I had our late lunch in the cafe down the hall. LB left the children's workshop early as she was showing signs of being exhausted. It had been a lovely first outing and she just wanted and needed to go to bed.

We wheeled over the road, into the hospital, along the corridors, in the lift and once at the ward door met Teen Boo and Grandma. LB went to bed and enjoyed the afternoon with TeenBoo, Grandma and Grandpa, as PA Julie went home and PA Janet rushed me down the road for a long awaited hair cut. At equal speed we then rushed into John Lewis to buy LB a nightie and a sun dress, as well as a few other bits and bobs, all half price in the sale. The nighties were longer than expected and the hair shorter!

Then back to the hospital via my Uni department and seeing a larger than life picture of me in the window! It's all part of an advertising campaign the Uni is running to encourage non traditional type people to sign up for Uni. I remember thinking how pleased I was to have got through the semester and all my work done before LB's illness.

And I guess that made me realise that this was the third time I have experienced my daughter fighting for her life. It's not easy to go through (of course much harder for her!) but somehow I've got through. Each time has been hard but it seems harder this time and much more unfair. I am angry at how she goes through so much. I'm angry at the thought she 'nearly' died, yet again. One of her Consultants made a comment at the weekend ward round, saying LB was justified to 'put in a complaint'. Of course she doesn't even moan about that type of thing. And yet I feel broken, ready to cry at any moment. I am desperately exhausted and worried that my depression will go downhill. I seem to be unable to talk about it all and I'm making sure I'm as strong and positive as much as I possibly can be.

Before I left LB with PA Hannah for the night I stayed with as she ate her tea and then the nurses changed her dressings. I was amazed to see the difference the antibiotic cream made to her wounds, although the swelling and redness was still there.

LB rang me at 8.30pm to say goodnight and that was today - and now it's almost 3am on Wednesday morning! So glad I get a lay in tomorrow morning!

LittleBoo update - Mon 21st July 08

2008-07-21T19:35:00.003Z

I wrote a comprehensive update and lost it all! I'm going to do it on word from now on and copy and paste it to here, as this has happened to me before.

So yesterday...

She's off the IV antibiotics and taking them all orally.

She's switched from having a 24 hour to a 12 hour overnight, high protein supplementary diet through her Nasal Gastric tube, subject to drinking much more herself and eating a high protein diet.

She has antibiotic cream to apply directly to the new redness and swelling on her trunk and swabs have been taken to ensure what bug it is, or isn't, and then the antibiotics can be tweaked as necessary.

The physios have had her walking a bit!

The OTs have made her a new hand and arm splint.

She's been off the Morphine for a few days now but coping with a dose of Codeine now and again - which I'm really pleased with as it has felt terrible knowing she's in pain and knowing that by themselves Paracetamol and Ibruprofen aren't reaching it.

There's the promise of a trip over the road to the local museum and museum park tomorrow, all things being equal.

LittleBoo update - Sunday 20th July 08

2008-07-20T12:25:00.004Z

We had a mixed night and this morning I was amazed to wake up at 9.45am to find the Professor was about to pop in our room to check on LB, on his weekend ward round! I'd have preferred to be up, washed and dressed, but the nurses thought a lie in would do LB and me good. They're right.

Sadly, we seem to have taken a step backwards. LB's Cellulitis infection seems to have reared it's ugly head again spreading round the existing wound, which was healing well, with a deep red coloured swelling. I can't tell you how my heart sank when I saw it. I knew LB had felt more pain recently and LB's nurse said that on Thursday they had stopped one of the cocktail of antibiotics LB was taking and then this started on Saturday. So she's been rewritten up for it. I find this kind of thing so hard. I'd only just felt she'd turned the corner and dared to believe everything was going to be OK.

As usual the phlebotomist came to take blood and as usual LB was distressed at the thought of it and during the process her Nasal gastric tube came out, causing more distress. The NG tube had to be replaced and it was planned to do so with sedation - hopefully less distressing.

I was STILL in bed at this point when there was another knock on the door. I couldn't believe my eyes when I saw it was my friend of 23+ years from Edinburgh, Helen! It was SO good to see her, even though she was passing through on her way to her holiday in Weymouth. How kind of her to plan us in to her journey.

The rest of day passed as normal with different nurses checking things, administrating medication and generally the bustle of the ward went on and we with it.

By 3pm Julie our PA was here and amazed at how much better LittleBoo looked since she last saw her on Tuesday. I don't know if this kind of comment lifts my heart or not, because I've seen the signs of 're'infection so clearly on LB's trunk today. It's definitely true she looks and sounds so much better but I don't feel happy with the 'rash' or whatever it's called. Her swob test request sheets, completed by the doctor said no improvement - cellulitis. She needed Codeine today and it makes sense why she was so unsettled last night and complaining of so much pain. I just hope so much she's n ot going down hill again. The size of the 'rash' and depth of swelling is greater than when we called 999 for the ambulance on the day she was admitted.

I have hardly been able to talk with anyone about all this, especially not in any depth, as she's always awake!

Nice things happen too and the nurses dressed LB so we could all go down to Theo's cafe for a family tea. It was lovely. She managed a fair bit of food - mainly over cooked vegetables in gravy and she generally fed herself. Back on the ward Julie brushed her hair and I helped LB freshen up and then it was time for PJs and bed. Sleep, on the otherhand, is becoming another matter!

Before we finally settled her down I asked the nurse if we could check the 'rash' again. It had spread and the swelling too. I feel very sad and all that goes with it - who wouldn't?

LittleBoo update - Sat 19th July 08

2008-07-19T22:01:00.004Z

My daughter is making progress. It's slow but sure.

Today the nurses wanted to get her dressed and we realised she had few, if any clothes, that didn't have a waist to them. The scarring from the Cellulitis particularly hurts in this area, so PA Zoe and I went home so I could have a quick accessible shower and then to Sainsbury's to look for sun dressers and came back with a selection just right for over heated hospital wards.

TeenBoo is home alone just now. He has a freezer full of food he likes and although this is a first time exp for him, he definitely felt ready for the challenge - especially now he has left school and is waiting to start college in Sept. I was really pleased to see how he has responded to the challenge and even though he was in bed asleep, the house was safe, clean and I had no complaints. So he deserved a treat - I left £10 for the boy who's also lived through the traumas of LB's acute and chronic illnesses before. Well done Teen Boo!!!

We had also heard that the advertising campaign I'd taken part in at Uni had begun and by all accounts there were posters of me all over the place! LB thought this was as funny as TeenBoo felt embarrased! So as ordered we found one which was duly photographed for her to see.

We then proceeded to take her down to Theo's Diner, the hospital cafe. She was in her wheelchair and looked so tired, pale, thin but extremely happy and excited. The cafe was very quiet and LittleBoo ploughed through a bag of Cheesy Wotsits, until she had had enough and then wanted a push round the hospital.

We ended up like a train, Zoe pushing me, me pushing LittleBoo and headed for the chapel where we spent some peaceful time away from the hospital environment. They had pebbles and stones round the cross and LB happily sat in her wheelchair making a dry stone wall. I don't know whether it was OK with the Chaplain (of course we put them back!) but I'm sure it was OK with God!

Back to the ward and both LB and I felt rather tired, so it was time for a rest, but not before I moved my petrol guzzling offensive mode of transport, from double yellow lines to a parking space in the tiny hospital car park. Thankfully there was a space.

I've developed an ear infection and have been feeling pretty yuck today. My face is very swollen and thankfully the analgesics I take for 'me' bones, seem to be more or less taking control of this added nuisance. One of the nurses suggested the doc takes a swab tomorrow to ensure it isn't Strep A!! whatever it is - it needs to go - I've had enough of it!

LB enjoyed watching various videos, which gave me the opportunity to doze, surf a little, or read the papers. When she woke it was tea time but she didn't do it justice. It was pasta, tomato and cheese bake with salad (the only bit she liked) and she told me confidently that she only wants smelly pasta (pasta with pesto sauce) and would I cook her some when she goes home.

Her meds punctuate the day regularly and we all felt she needed more pain relief. It seems a big drop from regular morphine to Paracetamol and Ibuprofen. So thankfully she had some Codeine, which I'm sure has helped.

She's now sleeping peacefully and seems settled and at one with the world. If I told you I'd never seen her weaker than tackling this illness, I'd be lying. She has been through so much in her short life. I think the difference is that this time she is understanding more and showing more emotion and able to articulate her feelings about what's happening to her - this adds a new dimension.

I'm determined to stay as strong as possible and support her all the way. Obviously, I'm exhausted and run down (throat infection, now ear infection) and this is a hard situation for me. No one wants to see their child suffering - that must be a universal experience for parents of ill/disabled children world wide. Equally, no child wants to see their parent in tears and distressed as a consequence of their illness. There's a time and place for my feelings and it isn't here or now.

Chicken Pox and worse.

2008-07-18T17:30:00.004Z

Hi everyone,Finally I have a lap top at LittleBoo's bedside.
I haven't had a chance to let everyone know what's been going on and writing a post seemed to take up too much time, when I popped home for clothes, etc.

Here goes the brief details of what's been happening:

On the night of 27th June/morning of 28th June, LB vomited and started coming out in Chicken Pox spots. Over the weekend it seemed that the she had a mild version of the illness and things would progress naturally without any problem. How wrong could I be!

As the week continued things got worse. Her Cerebral Palsy presented very severely with muscles tightening and continous painful spasms. By Thursday after doing all we (PAs and me) had done, we couldn't make her comfy, and she didn't seem to be getting any relief from the pain.

I rang the doctor and he refused to come out! He said he was inundated with home visits and there were only 2 of them on! He told me to bring her to surgery the next day. How was I supposed to do that? LB was in extreme pain and had stopped walking, was back in nappies, etc.

Anyhow I didn't take her to surgery, instead I rang her Neurologist and told her everything. By the next day LB was presenting with a rash . PA Janet and myself wonderd if it were a heat rash, so between us carried her to our wet room, where we gently showered her.

After an hour or so of her being back in bed I checked the rash - it was worse. I called an ambulance. The attending paramedics said our local children's hospital didn't like having kids with Chicken Pox going there. I felt I had to argue that her CP was so much worse...and about the rash. In the end they rang the A and E who said bring her down.

Within 5 mins of us being there, she had been seen by doctors and was already being admitted. It seemed this was severe Chicken Pox with a probable secondary infection of Cellulitis on her trunk too.

The drama continued and over the weekend she was admitted to The Intensive Care Unit where it was clear she was very ill and on a mixture of broad spectrum IV anti biotics until the cultures came back with an anwser of what the bug actually was. She was also on Morphine, which for the first time in a week seemed to actually successfully take the pain away.

The bug has turned out to be Strep A, causing Cellulitis, which affected around 1/4 - 1/3rd of her trunk and was/is of course very painful. We left the ICU after 5 days and from then on have been in a side room on an ordinary medical ward.

LB has defeinitely turned the corner but is still very poorly. There have been various complications, like excessive odeama, where she put on over 14 pounds (6.6kg), in 5 days. She also has dysfunctional kidneys, severe diarroreah and is ver weak generally.
But she has started sitting out of bed with the physios and nurses helping her. She is also eating a bit although is still on a continuous feed through her Nasal Gastric tube to help her build protein.

She has been a real trooper. I am so impressed with her courage and stamina. She is doing well and hopefully we'll only be here for another week or so. (Maybe I'm being optomistic!?). She has missed all of July at school - they broke up today. But she's recieved cards, picture texts from the kids and a visits from some of the staff when she was well enough.

Sorry this is so long. I'll be posting regular updates on my blog from now on.

After the bus and Chicken Pox update.

2008-07-03T19:10:00.002Z

When I went to town yesterday I had a slight sore throat. I thought nothing of it until a bit later when it started to markedly get worse. Within a couple of hours I was flat out and poor old 'Hemlock' our PA had the two Boo women to look after.

LittleBoo's Chicken Pox seems to improve, all apart from the affects on her Cerebral Palsy. I've never seen her in so much pain and distress. The increased tone in her muscles means she has more or less no control of her arm which seems to be in constant muscle spasm, causing her to cry out. She can barely walk and it is difficult to see her like this.

Things feel a little bleak just now and a weekend without PAs doesn't help. Trying hard to organise friends to help.

On the bus, on 'me' own - there and back!

2008-07-02T16:21:00.004Z

Today I needed to pop into the city centre to check out if I could manage to use a new mobile or not.

LittleBoo is slowly recovering from the Chicken Pox but understandably still clingy and wanting just me, or PA Julie-ulie. She's flat out, not eating and in pain with reduced mobility, due to increased muscle tone that many people with Cerebral Palsy experience when they become ill. Thankfully, with PAs to the rescue, I managed to escape for almost 2 hours.

So I took the bus! I've done it three times before, but never alone. On the first bus that arrived, the ramp was broken and a red faced bus driver drove off apologetically. The next bus was an old one with steps. Third time lucky and I got on with no problems. The driver was determined I sit facing the rear though and I felt nausea for the whole journey! Never mind, I got to town safely and although feeling a little apprehensive did what I needed to do and headed for the bus stop home.

The journey home was uneventful, apart from when the driver forgot to turn left and had to pull into Homebase car park to turn round.

So now I've done it. It was basically easy and straight forward and although I was bounced around a bit, which was painful for my joints, it's so good to be using public transport on my own.

Spots, Scrabulous, St Elsewhere...

2008-06-30T03:35:00.004Z

...and more spots!

LittleBoo is in the full throws of Chicken Pox. She woke up with spots yesterday morning and generally is dealing with it just fine so far. Tonight has been a little harder and I've been up much of the night trying to comfort her. Her Cerebral Palsy has deteriorated considerably, which is usual at times of ill health and makes things a little harder for her.

I didn't get in to bed until 4.20am - it's too difficult to keep getting up. Instead I've been playing Scrabulous, Facebook's version of Scrabble. I'm in the middle of 27 games and enjoying most of them. I've also rediscovered St Elsewhere, an 80's drama series I used to watch - it rocks! Freeview tv channels are great for 80's progs!

Well snuffly snoring noises are coming from LittleBoo's room which I guess is my cue to try and sleep.

A saxophone, a sponsored walk, an egg, a spoon and a marriage!

2008-06-22T00:14:00.006Z

LittleBoo was very excited. She'd got a letter from school saying that all children have the opportunity to learn to play an instrument. The options were flute, saxophone, voice training (strange but natural instrument!) and I can't remember the fourth. LittleBoo has decided she wants to play the saxophone!

OK - so how did I handle this? I told her that it was usually necessary for saxophone players to use both hands/arms. LittleBoo only has the use of one. Being her mother's daughter this didn't faze her in the least, 'I'll get a stand to hold it while I blow' , she said. Some how I'm certain she will.

The school also holds an annual sponsored walk to raise money for play equipment. Naturally LittleBoo wanted to take part and obviously I was only going to encourage her, even though I thought she'd only manage 1 or 2, at the most, 3 laps. However, the forms said the children would do a minimum of 20 laps on the field and I didn't want her to feel she hadn't raised much money, so sponsored her £1 a lap. Grandma and Grandpa did the same and our PAs very generouslysponsored her £4 in total each.

The day arrived and one proud LittleBoo couldn't wait to report home she'd managed 13 laps! Unbelievable! I was equally shocked and proud of her. Only problem was I was £13 down, rather than the quite respectable and sensible £4 the PAs had sponsored!!!

It just goes to show that even though for many years I've designed and tutored on Disability Equality courses, championing the message of never making assumptions about disabled people, I'm just as likely as anyone else to do so!

Sports Day came along and LittleBoo won the Egg and Spoon race! Yep you did just read right. She went on to tell me the teachers had blu-tacked her egg to the spoon. She asked me if this was cheating, so I said, 'Erm....unfortunately, yes'. But LittleBoo assured me it wasn't, 'It's just help mum'.

And today was classmate Finlay's 5th birthday party. LittleBoo was yet again very excited. Yesterday she told me she loved Finlay so much they were going to get married. I said that was lovely and asked what Finlay thought about it. 'He doesn't know!' she said, 'and I don't want anyone else to either!'

My lips are sealed, .....Mum's the word..... SSSSSSSSSHHHHHHHHHHHHHhhhhhhhhhhhhhh!

A new beginning - thank you John and Sandra!!!!

2008-06-18T19:50:00.006Z

Sometimes things just come together. An idea that has passed its time needs to move a side and make room for the new. Well that's what happened today. The life and times of an ageing crippy, my first blog, is over! And in its place is the all new 'The Life and Times of a Green Phoenix.'

So how come the change and why today?

Some weeks ago, when I met John, he commented on how hard he found it when I used the words 'crippy' or 'crip.' I never really took his comments too seriously and felt that it was him, not I, that was somehow missing the point. But I didn't, and don't want to offend him, so I've tried to alter my language in his presence.

Nevertheless I thought the problem was his - that is until today. I've been on a departmental Uni away day, where students and tutors were discussing how Inquiry Based Learning could become an integral part of the 'tool box of teaching resources' tutors can use to deliver modules to students. We worked in groups and I was grouped with Sandra, the Course Director of the area I'm studying.

Much of our discussions related to using ICT and how this benefits, or disadvantages a student's learning experience. Our discussions included the use of online communities and group blogs and from this I talked a little about my blog. Sandra said she really didn't like the name of my blog. She said it didn't reflect who I, the writer, am.

I told her about John's comments and she went on to explain how she understood the use of such things. It seems that the use of words like 'crip' or 'crippy' in irony or perhaps even thinly disguised humour, by disabled people about themselves, is a way of protecting themselves from others doing the same to them - at that point in their lives. Yet it's also a way of making others feel uncomfortable and possibly even creating distance between the different groups of people.

It all seems obvious now. Yet the choice of the blog name shows some insight in to my psyche and life experience of my pre Uni days, when life had been continually difficult for quite some time.

Quite simply that isn't the case now. It's not who I know I am, nor how others see me. My life has changed so much as I've regained the confidence lost from earlier in my life. So who am I now? Sandra suggested the word phoenix. After some thought I added Green and we seemed to agree that this is who I am now. So The Life and Times of a Green Phoenix is born. It fits for now and no doubt may evolve further in the future.

In the meantime, The Life and Times of an Ageing Crippy is dead. Long live The Life and Times of a Green Phoenix!

Food Glorious Food - Part one.

2008-06-08T17:43:00.010Z

I've been meaning to write about me and food for ages and it's only been during the last week or so that I felt able to prepare myself - in fact challenge myself, to begin to think I could write about what is a massive and very painful issue in my life.

Perhaps through writing this I might piece this life long puzzle together and begin to understand why this intelligent woman feels she's almost on the road to self destruction and a slave to food. So I hope, or rather intend, to 'bottom' this one once and for all, and make a shift, that results in something sustainable and more healthy. In this first part of my story, I take a look back over some of the food stuff I remember.

So here I am 43 years old, and it seems I haven't yet learnt the basics of how to handle this life-giving and necessary substance. Whilst it's true I'm morbidly obese, I mustn't be too hard on myself, as it's also true that I've been a wheelchair user for more than 30 years, with major mobility issues. I'm sure anyone can see that doesn't make things any easier, yet when trying to gain insight to the whys and wherefores, I'm not naive enough to be complacent either and know disability isn't the only factor in this story.

During the months after I was born, I was adopted after briefly living in a children's home, with foster parents and/or with my biological mother. My new family doctor raised immediate concerns that I was under weight, under nourished and that I hadn't been fed or looked after properly. Obviously I have no conscious memory of those times, but as a mother I've seen how my own babies responded to my breast or their bottle when they were hungry or needed comfort, security and the surety that they were loved and cared for. What I don't know is how, if at all, the opposite might affect a little one. I guess it'll be one of those things where there are as many schools of thought as people who have them. Personally, I can't believe these things go unnoticed by the subconscious. I know that within days of moving to my new home my body 'erupted' into vast areas of psoriasis, a probable reaction to moving to my fourth home within as many months.

So food was an issue from the start and like so many thousands of western women and girls, it seems I have unsuccessfully dieted , indeed I've yo-yo dieted, all my life. The first diet I remember was when I was eight. I can still hear my father's voice telling my mum that a child who is fat at 10 will become a fat adult. (So that's true then!).

As a junior school girl I remember summer days of faithful calorie counting and the feeling of ultimate control and victory when no more than 500 calories, but preferably 400, had been consumed in any given 24 hours. I knew all there was to know about food values and nutrition, yet at times dieted so harshly that dizziness and exhaustion became the secret trophies of my 'success'. Little did I know that it was likely my body was turning to it's muscle in order to get the energy it needed to live and grow. The praise and admiration I got from teachers and others was far more important.

I went to Weight Watchers as a very young teen where the 'so called' leader ended the class with, '...and I'll see you lovelier and lighter next week.' Yes I would be lovelier next week, as long as I was lighter and even lovelier the week after, as long as I was even lighter. The converse was of course true too and so the seeds of an unhealthy relationship with food, my body and self esteem, were yet again sown and reaffirmed.

Then in my teens during months in a long stay orthopaedic ward, my diet was altered almost as regularly as ward rounds, as different doctors appalled at ,my 11 - 12 stone frame decided they knew best and lowered and lowered my calorie intake until the next visit from dietitian who immediately raised it to 1000 calories, which even in today's diet focused society, is seen as very low for successful and sustainable weight loss.

I remember many episodes of being humiliated and almost stripped of my identity, one for example, when returning from a weekend at home, to be undressed by angst nurses, as the ranting doctor, determined that I had over eaten during my time away, ordered me on the scales. I can't remember if I had or not, but I had many more months, even years, of hospital, corrective surgery and recovery ahead of me and this thought, coupled with the trimmings of bedpan rounds (oh yes!), weeks and weeks of traction was too much to bear.

My peers were studying hard and playing hard, living the teen years of exploration, experimentation and frivolity. I, on the other hand, had endured experimental major surgery and already had a DVT and thankfully survived a Pulmonary Embolism. I'd had enough and it had to stop.

And I guess as an old child/young adult I realised that being fat meant no more operations or doctors. I don't remember making that actual decision but I do remember how hard the medical staff treated me in the 70's and 80's and the first line of my notes stated, 'This rather obese creature.....' It was a hard thing to read and resulted in many nights of hot silent tears falling on to my pillow. I wasn't even a fat (ish) disabled human, but a different species... an obese creature no less!

I guess that didn't only hurt like hell, but I was also physically weak trying to get over unsuccessful operations and at the same time trying to believe that the doctors would 'make me better' when in fact, I had not only nearly died at their hands but one of them had messed up an operation so badly that my femur was literally back to front - something I would only be told some 30 years later.

With hindsight, it would have been better to realise that being disabled was cool and that I was already a whole, complete and beautiful young woman, with life at her disposal but the hospital ambiance and orthopod egos said otherwise and understandably I wanted to believe that they were right, so I learnt very quickly I had to be made better or cured. So I was the problem and unless treated I'd never fit in anywhere, and oh, I was fat (actually not very!!) and that was my fault too - no one likes fat people either - and all this on a food regime that didn't include get well chocolates, let alone grapes! I know I was silently screaming 'Help!!!!'

After six and a half years Wahid's got his stay!!

2008-05-18T19:31:00.003Z

Alisha one of the other Governors from LittleBoo's old nursery rang to tell me that her husband Wahid, has got his stay!!!!

After six and half years of fighting and waiting, the news has finally come through and he no longer has to report each week to our main police station, not knowing if he'd be arrested and deported back to Afghanistan, where many members of his family were murdered.

The stress and strain Alisha and Wahid have been through doesn't bear thinking about . But now they can learn to relax and enjoy their marriage and love for each other and their children. And of course there are major celebrations planned! Quite right too. Alisha said they will be celebrating for a year - only a year?!

What great news to hear. She says they still can't believe it. I bet they can't!

My doctors.

2008-05-09T14:12:00.003Z

For the past 23 years or so, I have had the same GPs (apart from a 2 year period when I lived somewhere else).

Yesterday two of the docs at my GP practice had their farewell party. They are both retiring early and they are both great doctors. Surprisingly I've felt very emotional about it all. Obviously it goes without saying that anyone with the level of health and disability complexities I experience, probably spends more time at the docs that the average healthy woman might. So I've got to know them a little more and through that become to value their opinion and judgment - and importantly discuss it when I don't!

And they've always been so patient with me, as during the last 23 years or so, I've tried so many so called 'alternative' things to try and improve my disability situation - often with no benefit or occasionally even disastrous consequences, and almost always swallowing up large amounts of my limited financial resources!

Then they were there through my first pregnancy, once TeenBoo was born and the during the early weeks and months of being a mum. When things were really tough they were there and when it was time to stop working and look after 'me bones', it was them who helped me make such a decision as painlessly as possible. (It's hard knowing you're only 30ish and it's time to stop working because of your disability).

And now they're not going to be there. Of course the other doctors and staff at the practice are excellent and I've been more or less seeing another partner all the time recently, whom I've built up a good relationship with too, so things will be fine. But I haven't quite come to terms with the fact that the other two won't be there.

One of them is joining the army after working with the territorials out in Afghanistan. He'll be going out there again. He told me he's seen so many reviews and changes in the NHS and none of really for the better. So our loss is the Army's gain. All his years of experience and knowledge will not go to waste, but be used in very different setting.

The other, the one I was closer to, is retiring very early. She's off climbing mountains, sailing and doing the things she really wants to do. She deserves to - she has worked incredibly hard giving ceaselessly to others. And like me she's a Green, so it was easy to tell her I'd not written on the wine bottle gift bag, so she could use it again for someone else!

These two doctors have earned the right to retire early and do their own thing - whatever that may be. They have worked well over 50 years between them, giving to the people of this city, when support and knowledge is needed most - a time of ill health crisis, or helped those like me who have the ever-ongoing things that require support and monitoring to ensure life remains bearable.

In between all of that they've been looking after children, pregnant women, doing minor surgery, home visits, contraceptive clinics, preventative medicine clinics and it goes on and on.

I will miss them both very much. A huge part of my 'health care' life has changed. For them to both go at once leaves a bigger void. If all this sounds a little over the top, think a minute about my life and how much I have needed to depend upon them during the last years. The medical centre was an ordinary part of my everyday life - a woman with everyday health and disability complexities, as well as having two kids, one with Cerebral Palsy.

They won't be reading this. They don't even know about it! But I want to say thank you to them. Thank you for everything you've done to help and support me and my family. Please never under estimate the huge positive impact your lives work have had (and will no doubt continue to have) on other peoples lives. Thank you.

Two students in the house.

2008-05-07T18:02:00.002Z

From September there will be two students in the house! TeenBoo had an interview at college yesterday and has been offered a conditional place on the National Diploma in Media TV and Film.

It's a great thing for him to know which direction his life's going in, especially with him taking GCSEs between now and the end of June. It's just the thing to add motivation and a focus to get through these weeks and move on into further education - and the rest of his life.

It was great to hear the news and I'm very proud of him. I'm sure he'll like college better than school!

York!!

2008-05-06T19:52:00.002Z

Today I had an amazing adventure and I've got a huge smile on my face!

Unbelievably I went from my home to York and back in my electric wheelchair on tram and train!! And it wasn't just fine, it was fantastic! I loved every minute of it. It feels like life has turned a corner and I'm now able to take on the world!

Using public transport has always been something I've hoped to be able to do and then when I got my electric wheelchair I thought it would be easy. But with a lack of confidence, hand in hand with cold, wet or damp weather, I haven't really used the freedom machine as much as I could have. But today was a revolution, an experience to build upon.

So there I was on a train heading for York to meet my friend John for lunch. He'd kind of 'suggested' I should start using public transport more as a way of beginning to reduce my carbon footprint. I've been going on about taking more steps to live a greener life, so I don't blame him. But when he suggested it I wasn't keen at all. But there's nothing like reflection to help clarify things a little. It was either be a hypocrite and keep going on about wanting to be greener yet do nothing....or take some action.

Lunch was great - we talked and talked and far too soon the time was up and I had to get the train home. The moment I got home, I was greeted with 'No bread!', so did the only thing possible and turned round and wheeled down to our local Co-Op.

All in all a good day - a great carbon reducing travel opportunity, that went so well; an ab fab lunch visit with great company and conversation and then being the 'hunter gatherer' and popping down the Co-Op without carer or anyone else to bring the bread home for the family. No wonder I've got a smile on my face!

Yay!!!! We've Got Three Green Councillors!!!

2008-05-02T21:42:00.009Z

Today the local election results came out (I know, it is the day after the elections but it's just the way they do it here!) and we successfully got a third GREEN PARTY City Councillor! I can't tell you how pleased I am. The bad news is that the Lib Dems are in control of the Council. It'll be interesting to see how they 'rule' rather than be in opposition.

It would be great to be writing that the Greens were in the control of the Council and that Green policies were making a huge difference to peoples lives. The truth is that is very unlikely for sometime yet, but one day I hope and dream we'll be like some countries, where Green politics and ways of living are at the forefront of the political arena.

But right now we've just got to get on with it. In fact this has been very much on my mind for the last few weeks. Exactly how is the best way to get on with it? I'm becoming so much more aware of how 'un-green' my life really is. It's almost like living a hypocrisy. Well maybe not quite that bad. I'm not intentionally going around being un-green. But neither am I consistently including more ways in how I live, in order to lower my carbon footprint.

I guess I'm like loads of people. I'm not complacent but neither am I being green enough for it to feel the slightest bit uncomfortable, if you know what I mean!. I recycle, in the main I've stopped using free plastic bags, I buy secondhand clothes when I can, I'm always cutting down on the domestic fuel and water I use, have an insulated house, switch off the standbys, lights and the like, but the rest of it, really to be totally honest, I just think about doing. And that's not good enough, although leaves great scope for improvement!

I get confused about what works and what doesn't. There are so many different opinions about can be done it's amazing, for example, with solar power. Surely it's good but reports say it's not worth it - too bigger outlay for the saving (no doubt written by the leccie companies or the like!!).

Obviously this is isn't primarily about saving money. But what about people who can't afford to buy posh eco brands and instead buy major supermarket economy brands, for example? Can anyone blame them? I know I can't - I buy them. Yet to suggest that living a greener life is only available to those who have enough money to still feed a family after buying eco products, is really not what it's meant to be about and also rather offensive.

So how do those living on low incomes or benefits become greener? How do we make Green issues something that is relevant and available to all, regardless of background or financial situation? How can we be seen as something more than a one issue campaigning group but instead the fully rounded party with reducing carbon footprint(s) as a priority in how society is run and organised?

So often the Green Party itself is seen as something for middle class weirdos who wear socks and sandals. To be fair, they've got a point, yet whilst some fashion gurus might not see too much wrong with wearing socks and sandals, for clarity's sake let it be known, the Aliboo would NEVER wear socks with sandals! Although it has to be said I've met some incredibly nice people who actually wear socks and sandals and I wouldn't want them any other way!

Seriously though, we've got to become something that can be meaningful to real people, living real lives. We've got to challenge our comfort zones and go 'main mainstream' and I don't mean in the way that other 'larger' political parties have, by for example jumping on the green 'popularist' bandwagon, yet at the same time be contradicting their 'green spin' by dolling out policies and practices that are anything but.

I'm pretty certain we'll get there - one day. In the meantime reducing my personal carbon footprint needs working on..... big time.

It's me and the Pro Vice-Chancellor!!!!

2008-04-22T23:04:00.006Z

I'm not an academic. Maybe one day I will be, who knows? But I've got a looooooooooong way to go, as in a couple of months I'll have only finished year one (of two), of the Certificate in Creative Writing. This is also the level one stage of the degree English and Creative Media, which now my confidence is growing, I'll be signing up for - unless I find something else I prefer and I'm getting interested in many other things too!

Anyhow to get to the point! I was asked, as were many other students from different backgrounds, to submit a piece of writing to a special 'celebratory' type blog the university did last week called, 'Inclusive Curricula Week.' My piece was going to join other 'Students Reflections' on the Tuesday.

Imagine how I felt when I was contacted and told my piece - a two part blog recording the contrast between my day one at Uni and an update to today - was going to be put on the 'Friday reflections' page with the Pro Vice-Chancellor's piece! I was very surprised to say the least. Here's 'our'(!) pieces archived.

http://www.good.group.shef.ac.uk/blog/ Scroll down it's on the right titled 'Educating Rita'

The Inclusive Curricula project is still up and running with more than a year to go. As a disabled student I'm starting to get involved in some more of the work and issues it covers.

It's seems only common sense to me that Universities and how they go about teaching their students, is made available and appropriate to real people - and I don't mean just the disabled students like me, but also international students who pay so much, mature students, single parents and the list goes on. All too often this concept has been met by the criticism that this results in the 'dumbing down' of the value of degrees and academia, etc. But I believe the reality to be just the opposite.

To me it means that students who reflect the actual make up of people in real communities, work hard and become educated to a high standard and then live and work in 'the real world' having a clearer insight and understanding of the needs and challenges the people in real communities face.

They can then use this combined knowledge and experience to influence the better planning of whatever it may be - policy, service development, service provision, etc, etc - which hopefully in the end boils down to a better life for real people.

I wonder if the Pro Vice-Chancellor would agree me? Although I've never met him my gut instinct says yes - well, hopes yes.

LittleBoo is Five!!

2008-04-21T17:27:00.017Z

For me it's hard to believe, but it's true, LittleBoo was officially 5 last Wednesday 16th April. She has been looking forward to this birthday for so long, as we'd planned a special party for the following Saturday - more details about that in a moment.

So the night before her birthday she was , to put it mildly, excited and I felt the best I could hope for was her settling very late and waking very early. Come the morning she'd proved me wrong on both counts - so she got an extra star for her star chart (don't knock it, it works!) for not only staying in her own bed all night, but also settling down under 'adverse' circumstances.

Then it was down to the serious business of opening pressies! She had not asked for anything from me. Every time I asked her about a pressie, or suggested something she said no! Eventually she explained all she wanted was a surprise that was very girly. So that was exactly what she got! I guess it's no surprise that she wanted girly stuff even though she's being brought up in a home where 'girly' is just one of the ways that girls can be.

Then it was off to school for the day and once the bell went, a rush home, a quick wash and change into glad rags, then out for tea with Grandma and Grandpa.

So that was it for the actual day, but Saturday was drawing near and with preparations under way, time soon passed and at last it was PARTY TIME!!!

Now I hate having parties for myself or the kids. I can cope with the organising - the invitations, planning the food and all of that stuff. It's just on the day itself I feel like I'm excited and nervous at the same time. A bit like waiting in a departure lounge to go on a flight - you know logically it's all going to be fine, (apart from the environmental cost, of course) even enjoyable, but there's this deep nagging doubt that all will go smoothly. I'd felt nauseous all day and had not eaten at all.

So I had to put these silly feelings to one side and make sure Ruthie was going to have a wonderful time. Really I shouldn't have worried at all: the wonderful and amazing Professor Fiddlesticks - much more than a circus skills entertainer, was going to give two performances, the food was all ready - there wasn't anything else to do!

But by 3.30pm hardly anyone had turned up. My deep nagging doubt seemed to becoming reality. I felt really nauseous but thankfully, everyone arrived soon after and the show began. After that everything went like clockwork. Professor Fiddlesticks doesn't just 'do' a performance, he gets all the kids involved and teaches them how to do it for themselves.

The performances went really well. It can't be easy working with a crowd of 4 and 5 year olds, but Professor Fiddlesticks did just that and did so with obvious passion. The kids had a great time and we all enjoyed ending the party with balloon modelling. Personally I loved my 'watch dog'. Prof F borrowed my watch and next thing I knew it was inside a balloon dog! Simple things and all that!! LittleBoo says she loved balancing the feathers but I'm confident she has many more memories of what must be one of the nicest parties certainly I've ever been to.

My pre party anxiety had changed into a feeling of relaxed contentment and as we dropped Professor Fiddlesticks, juggling balls, devil sticks, unicycle and all, off at the station, I sat back in the car and reflected on what had been a lovely celebration. The passage of time from LittleBoo being born an extremely premature baby, through baby hood, toddler hood and the preschool years and now she's in the second term of infant school!!!

She has many daily challenges in her mainstream life, but like learning and practising new circus skills, she knows it can be hard and just gets on with it with gritty determination and good humour, in order to do her best.

'Things wheelchair users are not normally known for doing!

2008-04-11T15:10:00.003Z

1. Joined S******** Forum Walker's Group.

Last night after Uni I went to a Sxxxxxxxxx Forum Walker's Group pub meet. It was really cool. I am now an official member of the group and following discussions round the beer table, the group leaders are considering some great developments!

2. ?

5 more weeks until the end of classes in year one!

2008-04-11T13:37:00.004Z

I can't believe that I've nearly finished my first year at Uni. The time has flown by and with it my life is moving on in a completely different direction to the years before. It's all more than I had hoped or imagined for and as I just re-read 'Just Call Me Rita' the post I wrote during my very first week at Uni, I can see how so much has changed and is changing.

From the beginning I've had great support from my family, friends and PAs (carers). But more than this the University has been there to welcome, help and support me too. As a severely disabled student, staff at Student Services, The Information Commons and the Hillsborough Centre, have supported me immensely with sorting out all kinds of things including grants, helping me find books, equipment, parking permits, a mentor and my Disabled Students Allowance, to name but a few. The teaching staff have been great too and always ready to offer support whether from an academic or disability point of view.

In addition, when it was a bad day and I felt like giving it all up, or that I'd just never 'get it' and wasn't good enough, my Course Director was there, to refocus my mind and thoughts, helping me to begin to realise what was important and where I should concentrate my efforts.

The difference these people make should never be underestimated.

I've made friends with other students and I now feel I have a small insight into the importance of the relationships of the life long friends my parents had made when they were at Uni. Other students have been very friendly and helpful too and it's been good when, for example, a group of us studying in the same area in the Information Commons, have spontaneously joined in someones discussion, even though, none of us knew each other at all.

But it hasn't all been a smooth ride. I ended up needing extensions for my assignments from the first semester, due to a family bereavement followed by being ill myself. Shortly before this I had a real panic too when Registry Services wrote to me basically saying 'pay up or go home!! - in a nice way of course! I hadn't done what I needed to do to finalise my fee payment and had 7 days to sort it out or that was that! It took a rather red, apologetic face and two minutes to sort this out. Duh me!

I definitely 'feel' like a student and I feel so young myself that I often forget I'm biologically in my early (very early!) 40s, with two kids, a car, three cats and two goldfish! I have really enjoyed these months. I've learnt more than I ever thought possible and it's been great spending time learning about new things and seeing my interest in things take off either with the modules or at a tangent.

I'm looking forward to what year two brings.

Did you just click the link to my blog on the SF advert for PAs?.......

2008-04-04T13:44:00.006Z

........ well, welcome to my indulgence - my blog. Although very much neglected this has to be one of the most indulgent things I have - but I enjoy it. I just wish I had more time to write on here. But that's life!

So maybe you saw the ad on S.F and clicked the link to my blog? Or maybe you saw the link on one of my other posts - or even somewhere completely different. However you got here, why don't you make a cuppa, sit down and relax and maybe have a read through some of the pages if you have time?

That way, if you're thinking of applying for one of the PA jobs you'll get more of idea of what life is like in 'Maison Cripville' rofl. Seriously, feel free to surf around. Looking forward to receiving your completed application forms!

I multi-task but Xerox me anyhow!

2008-03-24T21:33:00.007Z

So much is expected of women nowadays. Whether it's running the home, working, volunteering, studying, looking after the kids and all their schedules, caring - whatever the mix is - we're expected to do it, regardless of time, energy and the things we might want to do for ourselves.

It doesn't take long for the younger generation to get into the hang of having a so called 'super' mum. Today it was the turn of 4 year old LittleBoo. Not only were her expectatons over the top, but her language too.

Unable to meet her needs as quickly as she wanted, she declared, 'Duplicate yourself Mum.' And it seemed she was serious!

Puleeeeeeeeeezzzzzzzzzzzeeeeeeeeeeee!!!!! She's four years old!

God help me when she becomes GirlyTeen Boo!!!!!

In memory of a former work colleague and friend

2008-03-15T11:00:00.023Z

In memory of a former work colleague and friend

from the time when I was able to work.

Owen McDowell
13th January 1960 – 29th February 2008

by Aliboo

A tireless advocate,

A fighter for equality and fairness,

An activist who challenged and took a stand,

A generous friend to many,

A man of intelligence,

A creative force,

The comedian with addictive joviality,

The creator of NOT The World Student Games

The philosophy of worldwide students staying put!

The ‘expert’ fiscal management, not leaving Sheffield in £30 million debt.

The dry wit quenching the thirst of all.

A mainstream man who was alternative.

A tragic death.

A massive legacy.

And from the people Owen worked with before he died:

Joint Statement

From Sheffield Refugee Forum co -Chairs: Naomi Cohen, Jim Steinke

Many of you are probably aware of the recent death of Owen McDowell. This is obviously an enormous personal tragedy for all his family and friends but also a great loss to the cause of working for better services for refugees and asylum seekers within Sheffield.

Owen's commitment to improving services, including at times pushing the boundaries of what agencies felt they could do, was a reflection of how strongly he felt about the treatment of refugees and asylum seekers. He consistently supported the voluntary and community sector as a key component of providing a range of services across Sheffield. His work on developing Sheffield’s refugee integration strategy and his efforts to ensure that it was meaningful to all partner agencies is a testament to his work in the field. He has played a pivotal role in organising the city's Refugee Week activities, providing much of the 'behind the scenes' energy and enthusiasm needed to make the week a success.

Owen’s commitment to the voluntary and community sector was not just a result of his own background within this sector but also a reflection of his willingness to work with all those trying to improve the lives of refugees and asylum seekers, whether they be statutory, voluntary, faith or community organisations. Despite the limitations of his role within the local authority, as regards being able to support failed asylum seekers facing destitution, he always tried to ensure that this issue was kept high up the agenda locally and that other agencies continued to address it. As co-Chairs of the Sheffield Refugee Forum we give a commitment that this issue will continue to be raised within the Forum.

Owen made an immense contribution to the refugee sector in Sheffield and his loss will be keenly felt by all of us working in the field.

He will be sorely missed at Sheffield Refugee Forum meetings where he brought a combination of good humour, commitment and thoroughness to often quite difficult discussions. We will keep you informed about any events held to celebrate his life.

Naomi Cohen, Jim Steinke - 10th March 08

2nd Semester.

2008-02-13T20:16:00.004Z

It feels so long since I've posted. I don't really know where the weeks have gone. As always I've been busy with everyday family stuff and also finishing the last semesters assignments. Thank goodness for extensions!

TeenBoo has applied for college and hopes to do Media Studies, subject to GCSEs, etc. LittleBoo is loving school. Her teacher and the rest of the staff all seem very positive about her but feel that her statement isn't recognising the amount of support she needs - so we're all fighting for more.

Interestingly, I've had my Uni assessment for DSA (Disabled Students Allowance), kind of the equivalent to her 'statement'. Whilst I understand that there are fewer disabled people entering higher education than primary education, I am still in shock as to how straight forward, efficient and supported the system is for Uni crips, compared to the bureaucratic nightmare LittleBoo went through. The only thing I have had to wait for was the initial assessment. After that the report and recommendations were written with startling efficency, the draft report approved and the final report is in the hands of the local authority, for them to do their bit - which they have 15 days to turn it around in. All in all, since the assessment, we're talking 5 weeks so far! A far cry from the torment of LittleBoo's process, which has taken months and months, with a final result that is still unsatisfactory.

On more of a positive note, I've taken delivery of my new NHS electric wheelchair. It's really cool and I'm getting used to it. Strange how easy it is to lose the confidence of former years. No worries though, I'm taking it one day at a time and getting there. The S******** **** Physical Disability and Therapy Team are brilliant too and as usual supporting me all the way.

Tomorrow I start my third Uni module. I'm looking forward to being back in a routine as far as Uni work goes. It still feels a real privilege to be at Uni. I've changed modules and this time I'm 'doing' Poetry instead of Writing Short Stories, which I'll be doing the first semester next year. I've never been particularly in to poetry, but surprised myself during one of the core modules last semester, when compulsory exposure led to sponataneous interest! To miss out on joining a class where many of the students from last year will be, and in particular my mate Olster, would be a shame. So I decided to grab the opportunity and thankfully both lecturers agreed.

I'm also looking to the future and beginning to consider what I want to do after this HE certificate is over (3 semesters away yet). I had thought I'd go for the BA English and Creative Media, my Dept does. But my thoughts change constantly, and I don't know what I want to do, other than English - but with something else too. So far I've day-dreamed about the possibility of criminology, drama or theatrical skills. Maybe history or psychology. My problem is I keep coming across areas of work I find interesting and want to learn more about. Thankfully I don't have to decide anything yet and can carry on just exploring things, which in itself is quite a luxury.

But always best to walk before you can run....... I guess an interesting comment coming from this 100% wheelchair using ageing crippy!

Today was a successful beginning!

2008-01-03T18:47:00.000Z

Little Boo joined the Reception class at her new school today!

I left her there after just 5 mins or so. She was playing and getting on with it all quite happily, so I went down to Social Services to try and sort out her disability support package, known as SEN Statement. Hopefully that will all be sorted soon.

The day went well and she came home telling us she enjoyed everything, including her lunch: a jacket potato with tuna mayo.

I'm pretty certain it's the right place for LittleBoo. The staff are very positive about both our disabilities and definitely want her to be involved in everything. They seem very keen about meeting her needs without suffocating her and making more of her disabilities than is necessary. It's looking good!

LittleBoo says, 'It was great wearing my school uniform and now it's time for bed. Good night!'