The Changing of the Guard.

In just over 12 hours I have an appointment with wheelchair services to have my new wheelchair fitted.  If all goes according to plan it comes home with me and my action 3 stays there.  Policy is that wheelchairs returned to them go to the workshop and get refurbished before being reissued.  I doubt they’ll even bother to look at mine because the reality is I use my wheelchairs to death before they get replaced and it’s fit for nothing but a trip to wherever it is dead wheelchairs go when they’ve served their time.

I’m looking forward to it and very hopeful that the new set up will be better for me.  And I’m really looking forward to having a wheelchair cushion for my powerchair and one for my manual again after six weeks of just having one and having to switch it every time I switch which chair I’m in.  I went for another Jay 2 Deep Contour in the end if anyone is wondering.

This is the longest I’ve ever had a wheelchair for – Facebook told me that my assessment for it was 8 years ago this week and it took another three months to come after that – and I’ve been feeling a bit introspective this evening. I talk about how my manual chair is for home (mostly) and I use my powerchair for going out. And I had decided that I’d like to do more going out in my new manual. 

But thinking back over the last 7 and a bit years it’s done a lot more than help me at home. I’ve used at funerals and friend’s weddings. It went to Birmingham for a three day conference, London for an awards ceremony and Cardiff for my sister in law’s hen do. I was in it when I went to the hospital to meet my nephew. It got me on theatre trips, shopping and to many other things. I’ve used it (and abused it), fallen out of it, done many a thing my wheelchair team would disapprove of, been told that the repair team like coming to me because I really use my chairs and they know whatever I’ve done I’ll have enjoyed it. And basically lived.

My chairs are a part of my body. Always there, always working to keep me moving. My powerchair is the hero, the one people see, and the one that does the big stuff. It’s the celebrated one and people worry if I’m not in it.  My manual chair that’s the quiet one in the equation that allows me to live and thrive as an independent woman. But it’s a key role, unseen but oh so necessary.  I need it as much as I need my powerchair and I can’t wait to see where I’ll go with the new one.

A blonde haired toddler having a go at pushing a woman in a green fleece in a manual wheelchair(This is one of my favourite pictures of me in my manual. I went to Millets Farm and having seen his Daddy pushing me my nephew decided he wanted a turn.)

A new chair

I’m getting a new manual wheelchair provided by the NHS.

I had an assessment with a rehab engineer and an OT today.  There was some discussion and after a few minutes I said “So I am getting a new chair then?”

And the engineer who is someone I’ve seen in clinic before said “Emma, the only reason we’re letting you go home in that chair is because we don’t have anything here to lend you and we can’t send you home without a chair. If we had something else you’d be in it.”

They also got a new type of cushion out for me to try and the OT declared she didn’t want me taking my old cushion home so sent me with the trial one. That’s a Qbitus Q-Care Integra 2. I’m to ring her tomorrow and say if I want to keep using that or to have a new one the same as I had which was a Jay 2 Deep Contour. Currently undecided on that.

So I’m getting an Invacare Action 4 – this is next one up from the Action 3 I’ve had since 2009 but looks all but identical. The change is due to my weight. I will have new lateral supports and solid back, identical to what I have on this (Jay J3 backrest). Something was mentioned about a higher back but I lost track of what was decided. Slightly deeper seat and elevating leg rests in the hope that will help with both spasms and lymphoedema.  It’s coming in my preferred black.

I knew my chair was desperately showing it’s age but it was working. I had been relatively sure my cushion had had it.  But I really hadn’t expected them to be completely horrified by the state of things.  It’s been made very very clear by both of them that I need to be keeping in much better touch with the hospital based wheelchair team and that this replacement should have been done about a year ago. Although I did tell them that last summer I saw one of the mobile team for a repair and commented about a new one but he basically said budgets meant they didn’t get replaced until they couldn’t be repaired.  

I’m very excited for my new chair – they are marking the order as urgent but no one is sure if that will make a difference. Still hopefully by August I will have it.

You Know You’ve Got CP When…

…you don’t know whether to post an “argh terrible disaster it’s all going wrong crisis.” status update or a “oh wow this just happened I rock” status update – and the two things relate to different parts of the same incident.

So it was something like 11:30pm last night. I’m on the computer and beginning to think about bed but I’m waiting for something on here to finish. I decided to leave it on and go to the loo, start getting sorted.  I’m in the hall, almost to the bathroom when something happened to my manual chair and not only wasn’t I moving but it had dropped in one corner and I was half in and half out the chair.

My powerchair is also in the hall so I try a couple of times to get myself up but I can’t. I have to ring my parents. My Dad answers and it turns out I’ve woken him up. He comes down and lets himself in and I’m really surprised that I didn’t fall out in the ten minutes it took him to get up and get here. I’m sore from having my leg in a position it doesn’t like and that triggered a ton of clonus (which I rarely have any more). Whilst I was waiting for him I’ve had a better look at my chair and I think one of the castors has snapped all the way off as it’s in a really wrong position.*

Dad tries to help me up and can’t. I say I think I’m going to have to get on the floor but he tells me no because he won’t be able to get me off the floor and we’ll have to call an ambulance. He folds my walker and manages to get it round in front of me but even with that I can’t stand – it’s too low with the way it’s fallen and I’m slipping more and more forward (and out) with every attempt.  Can’t bring me my powerchair to try to get into as it’s behind me and my hall isn’t wide enough to get it past.

It’s gonna have to be the floor. Which we’re both thinking means a call to 999.

I did a semi controlled fall to the floor. Dad grabbed my arm to help me control it as much as possible which is probably the only reason I didn’t hit my head as I suspect I don’t have enough control of my trunk otherwise.

Dad moved my manual out of the way and I started moving towards my powerchair. If my last proper fall is anything to go on I am getting a visit from the paramedics but my fixing this myself needs one proper attempt first.

I can’t crawl but I can move myself by doing a sort of rocking from side to side slither on my tummy (it’s not commando crawling)

I’m moving. This is good.

I get myself up on my knees on my first attempt leaning on the powerchair. This is even better.

Then I have a few moments knelt there trying to figure out what’s the best way of doing this. Pressing down on my cushion was my first thought but didn’t feel right.

I’m levering myself up. I’m getting more and more up and convinced that I’m going to get so far and lose it and crash down. So far I’m not really injured and I know when I do crash down it’s going to hurt. But I need to attempt this.

Only it ended with me up and twisting round and into the powerchair.

Neither Dad or I are quite sure how that happened (my last fall I was on the floor for over two hours and it took 2 people to get me up. I was covered in bruises for days after from both the fall and my failed attempts to get up).  Mum told me this morning that Dad went home and told her “she just got herself up.” She was also shocked.

I’m sat there and I’m shaky and full of adrenaline and tears and panic because that moment when you go from fine and moving to stranded and about to fall is scary as shit.  This is something that actually I need to write more about at another time.  And I feel bad because I woke my Dad.

But at the same time there’s another part of me that’s sitting there thinking “holy shit I just did a floor transfer.” and kinda wanting to grin and shout from the rooftops that I did it.  (I suspect adrenaline had a role in that and I may not be as able if it wasn’t an emergency)

*It turned out to be really bent rather than snapped. This was taken after Dad straightened it a little. the very badly bent out of shape castor on my manual wheelchair

Wheelchair Woes

So I was really happy.

I finally after nine weeks+ had two working wheelchairs. My manual for the house (and the little bit out the house I use it for) and an absolutely amazing new powerchair that – teething problems aside – blows my mind.

Only my manual had been making a really terrible noise intermittantly along with moments of not feeling right.

I had no idea what was wrong with it and it was so intermittant that I didn’t see the point of calling the NHS maintenance team. I just knew they’d come out and it would be working fine at that point and it would be a waste of time.

Then it started getting worse and I was had a vague idea what it might be. But it wasn’t constant even if it was happening more often.  I decided I was going to have to call them but I’d leave it until some vague after I got my new powerchair time. I couldn’t cope with no wheelchairs of my own.

When the tech brought my powerchair out he moved the manual for me and spotted the problem. He told me what it was and said to get it sorted soon before it worsened as if it did I’d be stranded.

So I called them gave them a vague description and they agreed to come today.

Yesterday it deterioriated to the point I couldn’t use it. I couldn’t really move and I’m not sure how I limped it the 2 or so metres to my powerchair. I was just pleased I was in my bedroom when it went.

Mum came round and we both thought that it was beyond repair. It’s relatively old for a wheelchair (almost 7 years) and we could see the part that had broken was rusty.

I was like “four days?! I only get four days free from wheelchair problems?!” and I cried. I also warned everyone that I was unlikely to be going sailing as no manual = no sail.

Then I called the maintenance team to warn they it wasn’t useable.  I started explaining and he said “Is this Emma Crees?” This isn’t the first time he’s done that when I’ve called, I must be memorable or something!

I told them I didn’t think it was fixable and I was worried about being left with no manual chair. I knew if that happened they’d loan me one but I also know that my chair is a nonstandard size so thought the warning best.

He was absolutely admanent that he knew what was wrong with it, he’d tell the guy coming out, they’d have the part in stock and would make sure it was on the van ready. It was fixable and it was fixable here.

Fast forward to this morning and I’m reading my book by the window. The tech has my chair out by the van working on it. I can see him from the corner of my eye and I’m vaguely wondering what he’s doing because it looks more involved than I expected. This is concerning me.

He came back in and he was like “Your backrest was loose so I tightened it. I fixed your thoracic support and I tightened your footplate too.”  I was really pleased (especially as that thoracic had been broken for aaaaaages as I thought I’d need to go to the hospital to get it fixed as they’ve previously been considered too specialist for the mobile team and who could be doing with that?) but none of those were what I’d called him for so I was still waiting for the other shoe to drop.

He didn’t have the correct part to fix my broken castor (turned out I’d lost a bearing), the one he had was the wrong size. He’d put it on but it wasn’t sitting “right” so he’s ordering the correct size and will be back.

Not only do I have a fixed wheelchair, I have a wheelchair that’s in better condition than it’s been in over a year. And I got to go sailing too.

Here’s hoping that troubleshooting the new powerchair goes just as well tomorrow and I can truly have no wheelchair woes!

A part of my body – me and my Action 3

When you’re given a wheelchair on the NHS it’s expected that it won’t be replaced for five years.  The exception to this rule is if you’ve had a change of need.  For example growing up I never, ever, hit the five year mark because I was growing taller and needed bigger chairs.  I was told when I got my current chair and asked for clarification of what a change of need might be that they “wouldn’t expect to see a change of need in someone with CP.”  The five year life of my Action 3 (my current manual chair) is up in about six months.  So I’ve been thinking over the last few weeks about wheelchair use etc.

First of all this is the first chair I have ever had from wheelchair services where I’ve reached the five year mark with it.  I’ve actually been back to wheelchair services for reassessment and/or major tweaks twice in the life of this chair (well three times, but two of those visits were linked) and I’ve had I don’t know how many visits from the mobile technicians to do repairs.  When I went back to wheelchair services last year (when my cushion started leaking gel, basically exploded and had to be replaced) I asked the OT about the five year rule.  She said they don’t automatically replace a chair after five years but look to see if it’s necessary.  She also added that with someone like me who they consider an “active user” they would anticipate having to replace the chair.

So you’d think that I’d be thinking six or so months ahead and bouncing with the thought of a new chair to come. Maybe start looking at options I could get if I got a voucher instead of a chair.   If they literally made me wait until October when the five year mark hits I’d be looking at a new chair for Christmas if time scales work to their best or knowing how these things often turn out more likely early next year.

But I thought about it.  And after not very much thought at all I came to the shocking conclusion: I don’t want to ask for a new chair.

I consider my wheelchairs to be a part of my body.  More so my manual than my powerchair now I think of it.  I wonder if that’s because I’m physically using my body to move the manual rather than just my hand to move the powerchair?

And this manual chair does mostly what I want it to do, when I want it to do.  It’s a bit like my actual body in that sense because it likes to have it’s strops and it could definitely be better but we work well and we’ve reached a good compromise.  I tip to one side and it catches me.  I reach for something in front of me and it moves with that movement as well as with purposeful wheeling. It was the first wheelchair I had that could sit me this upright and reduce my back pain.  And a couple of years ago it gained the most comfortable cushion I’ve ever had.  One that I sort of melt into and that has more support under my left side than my right so my hips are level.

Of course there are bits I don’t like about it but that’s always going to be the case with any wheelchair I have.  I don’t like how easily the footplates break with any force.  I frequently spasm and snap them.  I did it early February and I did it again in early March.  I have the NHS wheelchair maintenance team though who come out when I need them at no cost and no fuss.  A couple of years ago when my backrest broke and I couldn’t sit in my chair they came out within an hour with no complaint or no fuss.  I apologised for calling out of hours and ruining their Sunday.  They didn’t mind at all.  And that was on Easter Sunday.

If I go back to wheelchair services I believe I’ll be offered a choice of the same chair, 1 other chair or a voucher (where they would give me the money they would spend on a chair for me and I could buy something different or better with it and a top up of my own money).

I don’t want a voucher.  I’d lose my access to the NHS maintenance team and given how reassuring and how useful that is I don’t want to do that. Plus, with most of my out of the house mobility being in my powerchair I don’t really need an ultra light weight, sexy manual.  It’d be nice but not so nice that I’d spend a grand and a half to top up a wheelchair voucher as well as god knows how much for five years of repairs and maintenance.  I don’t know what this hypothetical other chair would be.  But I do know that usually they offer one rigid and one folding so it’s probably a rigid one.  And that other than that the one I was offered before was much of a muchness to what I’ve got now.

What I’ve got now works.  it’s a part of my body.  I don’t have to think about where do I put this hand when I transfer.  I’m sat on my bed or my shower seat or whatever and my hand and my chair find there own ways together and to just the right place where I need them for a transfer without conscious input from me.  I’ve got my spiel for folding it down “you see those yellow stickers on the side? By that there’s a catch…” and I know what sort of obstacles it can handle and what it probably shouldn’t but I can just about force it over.  When I get back in the boat after sailing and Dad tells me “don’t freak out but your chair’s broken.” I know at a feel and at a glance when it actually is broken and when its just a case of someone moved it without me in it and found a design feature they didn’t know about.

My wheelchair isn’t a tool.  Society would say I’m wheelchair bound or that I’m confined to a wheelchair.  It’s my freedom, my independence and my life wrapped up in metal and wheels.  If I am ever bound or confined by anything it’s societies attitudes and the barriers they place in my way.  Not by my chair.  Never by my chair.

It’s battered and it’s scratched and I’ve destroyed so many plastic clothes guards that I got pissed off and stopped asking for them to be replaced but pulled them off instead.  It screams my personality by the fact it’s perpetually dirty and shows off my status as a long haired crip who knits and crochets by the fact there’s almost always a pile of hair and a scrap or five of yarn wrapped round the castors.  I bear the scars of my life.  So does this chair because it lives and loves it with me.  And I think it’s got a few years left in it yet.

A Dream Is A Wish Your Heart Makes…

I’ve been doing a fair amount of writing (fiction) and the character I was writing about was thinking about the disney version of Cinderella. Specifically the song lyric “A dream is a wish your heart makes when you’re fast asleep.” And then I started thinking about it.

I frequently remember my dreams. They are very detailed and often borderline surreal. I can remember dreams I had months or years ago although not usually when I had them. I also have a recurring dream. I’ve not had it for absolutely ages but it was the one that came to mind. I think taking baclofen might have something to do with the way my dreams are – although even as a young child in my medicationless days I still remembered some of my dreams. But I think I read somewhere that baclofen can cause nightmares in young children? So it wouldn’t be too much of a stretch to think it’s got something to do with the way my dreams are. (Side note I wrote half of this entry then came back to finish it a week later. During that time another CPer brought up the baclofen weird dreams thing so it seems I’m not the only one)

Anyway my recurring dream is that I’m out somewhere, it could be anywhere and usually is a different setting each time I dream it. And I’m not in my wheelchair. I’m walking around. Whatever’s going on in the dream is happening and all is good. But then in the dream I suddenly remember that I can’t walk. The dream is derailed (I think last time I was in a shopping centre and trying to find somewhere to buy a sandwich) and I spend the rest of it hunting around, crawling or more likely shuffling on my tummy (as thats what I actually have to do if I don’t have a mobility aid) in a bit of a panic looking for my wheelchair. This is always a dream and as yet has never taken the form of a nightmare but every few months I’ll have a variant of it.

So when a dream is a wish your heart makes when you’re fast asleep came to mind I started wondering what wish that dream could represent.

My first thought (and it was one I didn’t like) was whether it could be construed as a secret wish to be able to walk. I imagine that’s what a lot of people reading this would take it to be. Especially those who knew me back in the days when I was a long distance manual wheeler and short distance walker but who don’t see me often now.

I can stand. I can take a few steps when I transfer and very very very rarely if the stars align meaning I both need to and I’m having an amazing day at the same time I can walk a few metres with a walker (specifically, for the curious, I have a rollator). Yesterday and today were the first days that happened since the first week in January.

I’m really glad I have the level of mobility I do. I work hard with the help of my family to maintain that. But walking is exhausting, it’s painful and the risk of a fall and injury is always lurking unseen. Plus, I have no balance so I can’t do or carry anything when I’m on my feet. If I’m in my chair I have less pain, it takes less energy, my seating support means my balance is much less of an issue. I can do things and be independent in a way that I never could without my wheelchair.

In the past almost 13 years since I went to uni I’ve gone from using a walker inside and a manual outside through using a manual all the time to my current set up where I use my manual in the house and a couple of other places and use my powerchair if I’m out. There are small changes I’d like to make – I at times miss my mad wheeling skillz I had with my manual in my uni days – but walking isn’t one of them. For someone like me walking really is overrated.

No what I think the dream represents is a feeling of safety and independence. Because as well as giving me independence my chair makes me feel safe. I can move much quicker, safer and easier. I can react if I need too. When there was an argument outside my flat right a few days ago I delayed going to bed until it stopped. I felt I needed my mobility just in case.

And most of all it represents being whole. Because my wheelchairs are a part of my body. And a huge part of me. So maybe dreaming that I’ve lost it and panicking until I find it is about being accepted. By others and by myself.

Wheelchair Etiquette

Every so often I see articles doing the rounds online about dos and don’ts for dealing with us wheelchair users.  I don’t agree with a lot of things those include.  I was thinking about writing my own version but basically it comes down to

Be aware of the persons preferrence – a lot of these articles say you should get down on wheelchair height if at all possible when talking to a wheelie.  I prefer that people remain standing – or sitting whatever they were doing.  I’m not a fan of the crouched down beside me making a special effort thing.  I’m not just saying that because of the seat riser in my powerchair I’ve always thought that.

And don’t touch my damn chair.

Don’t lean on it.

Don’t move it when I’m not in it unless I ask you too

Don’t sit in it when I’m not in it.

Don’t grab my handles and take over pushing

Don’t grab my handles and stop me because you want to talk to me (which is what someone did tonight and is why I’m finally writing this post)

Realise that there are always exceptions to these rules but I’m not always going to tell you in advance what they are.  I don’t always know what they are! One such example is in this entry and still makes me giggle to remember four years later.

I’m wondering if this is a topic I need to come back to at a later date and in more detail – what do people think?

>Details on my new seating

>Two weeks ago I went to Wheelchair Services for a new assessment. Two very productive hours later I left with a completely pimped chair and all new seating.

And it was so easy.  I didn’t have to fight for anything and didn’t need to argue my case at all – the therapist simply saw me and talked to me and made suggestions.  That was so different to my last assessment where I thought I was constantly having to push for things (and where I didn’t get what I needed looking back).  I’d actually made my Dad take the afternoon off work to take me so I had back up – and had given him strict instructions as to what we needed to get a definite answer to etc etc.  Turns out I could have gone by myself.  But it was absolutely lovely to get there just the right amount of early and to leave as soon as the appointment was over – and that the only stops on the way home were the ones we wanted to make.  I’m very grateful for hospital transport but it does make for a very long faffy day usually!

The first thing she did was give me a new wheelchair cushion.  It’s a jay2 and she added an insert to the left side to level out my hips (my left hip was previously lower than the right). This led to the discovery that the curve in my spine is high up and with level hips, my shoulders aren’t level.  Nothing can be done about that.  She also added a pommel to the front of the cushion to help me keep my legs/knees apart.

The cushion is so high that I then needed my footplates raising.  And if I’m honest in the past two weeks I’ve found they weren’t raised high enough – must get my dad to shove them up a bit more.  I know how to do it but I need to be sat in the chair to make it work and that’s not going to happen if I try!

The frame of my chair needed to be dropped lower on the wheels (or the wheels were changed to a higher position on the chair, more likely). That was to make it easier for me to reach the wheels and push myself.  With the new cushion I felt like I could reach but it wasn’t as easy – I had to reach down rather than putting my hands there and they were in exactly the right place.  It then became obvious that my casters needed repositioning as moving the wheels had left me with a very bucketed seat which isn’t right for me.  We won’t talk about the amount of yarn and other crap she pulled out of the workings when she took them off to move them.  I knew there was a load there but I hadn’t realised it was that much.  Cue the OT commenting that that might be why it wasn’t very manueverable. In an amused kinda way.

In terms of the backrest of my chair (I already had a jay3 backrest) laterals were added.  I pretty much knew that I needed laterals but had anticipated that this would be where the problem and the needing to fight would be.  This was due to the fact that all the physios I saw over the summer (and the fact that serial casting requires two people meant there were a lot) tended to follow up remarks about the lack of support my chair gave me with a comment as to my lack of arm rests.  But as I finally pointed out to them, arm rests do not give support on your sides and as that was what they were talking about my lack of arm rests was irrelevant.  The physio in question agreed with me about that but it had made me apprehensive about the discussion when I got to wheelchair services.  I need not have been because there was never any question of my not having laterals and arm rests didn’t get mentioned at all.

The laterals in question are swing away ones.  They have a catch to move them out of the way as needed.  I’ve also found that they move if I deliberately lean to one side (to reach something) although not as easily.  I’m not sure if that’s meant to be the case with swing away laterals or not.  It’s a little annoying if I’m honest but I could see it as something that’s meant to happen.  Possibly to stop people hurting themselves but also as a memory prompt – if it moves when I’m not deliberately reaching over then I realise that I’m tipping to one side (the left almost always) and can right myself.  I like them, they help a lot and they are really inobtrusive, hardly noticable at all.

The final thing that was done to my chair (for now) was the addition of a spine align kit.  This amuses me because it sounds all high tech and complicated and like some sort of painful metal frame.  But it’s two foam wedges with velcro on them placed between the plastic shell of the backrest and it’s cushion.  These help the cushion mold to the shape of my back more and make it more comfortable.

In a few weeks I will be getting something fitted to my footplates which might stop my legs going into extension when I wheel.  I’ll believe that when I see it (it working I mean) but I’m willing to try it.  I think they’re called Skate Shoes but googling can’t find them.  It’s something shoes anyway.  They are screwed on top of footplates and you put your foot/shoe in them and they’re shoe shaped.  Usually people have them to stop their feet slipping backwards off of the footplate.  I’m having a cut down version (hence the delay) put on the wrong way round in an attempt to stop my legs going forwards.  I very briefly tried a calf strap but as I told the OT it hadn’t in the past it didn’t work. (she believed me but had asked me to try it so she could see what happens)

The fact that these are called something shoes was a cause of (slight) amusement as we were leaving the hospital when my Dad said he didn’t think it would work as I have enough trouble putting shoes on and wouldn’t be able to put these things on too.

At the moment I’m not getting a new chair but there is a brief possibility I might find I need one.  The one that was discussed very briefly was XLT by Invacare which is a rigid chair and looks great.  Altering my seating and giving me a new chair at the same time wasn’t thought to be a good idea as it would make troubleshooting any problems doubly complicated.  As much as I would like a new chair… I’m thinking it probably won’t prove to be necessary. Sadly.

I’m loving my new seating but still getting used to it really.  I did find the fact that the chair I have (an Invacare Action 3) retails for £495 and the seating I have (a jay2 cushion and a jay3 backrest with laterals) retails for over £800 a little hard to get my head around but there you have it.

>Don’t Look Back In Anger

>I went for my wheelchair assessment on Wednesday.  And it went really well.  The details and all that are for another entry as I’d like for that to be a positive entry. For now lets just say that I’m trialling a new seating configuration and the question of whether I need a new chair as well is on the backburner at present.  So far I like my new seating but I think there maybe a few niggles which need ironing out in the long run.

The thing is though I can’t help feeling a little frustrated and even angry.  I was assessed there in 2009 and I told them certain problems I am having.  Problems which the new seating I’ve just received is hoped will help with.  In 2009 however I had to really fight and justify to get what I did.  And then on the day I went for it to be fitted the therapist commented that I was tipping to one side and not sat even (which was something I had told them about before that).  The response was to get me standing and rearranged and then sit me down again.  I was told I’d need to be care to make sure I did that when I got in the chair and sent on my merry way.

The thing is though I do so many transfers in a day (I tried to count one day but couldn’t keep track) that I can’t always remember to do that.  And if I’m tired or ill it goes out the window.  Plus even within my chair I can’t keep my body in that correct position.

When I went to see my physio for the first time in July she commented on my position within my chair and said it was the cause of a lot of my back pain.  Something she asked me was why I’d not gone back to wheelchair services to tell them and ask for help.  The consultant in spasticity clinic commented on the same thing.  I gave them both the same answer – I hadn’t seen any need or point in it as it had been like that from the day I’d got it.

I’m hopeful that the problems I’m having can be resolved for the most part and I’m very pleased with recent events.  But part of me is looking at how things have been handled now and comparing them with what happened before.  And feeling a little bit angry and frustrated about it and about two years of pain etc.

There is little point to it I know and I’m trying to keep the Oasis lyric in mind and let it go.  It’s just not as easy as I’d like.  I have a friend who tells me he doesn’t let things bother him and just gets on with them.  I wish I could do that or that I could learn too.  But he can’t explain how he does it, he just does.  And actually I think sometimes you’ve gotta take the bad with the good.

Don’t look back in anger,
I heard you say
At least not today

>If My Chairs’ Had a Voice – A Blog for International Wheelchair Day

>Today is International Wheelchair Day. As such the wheelchairs that are part of this A Writer In A Wheelchair blog are having there say after I dreamt of blogging a photo of my powerchair with a “I am in disgrace” sign on it. Because it is. Long story and it’s all on twitter anyway.

My powerchair speaks…

[A photo of my Pride Jazzy 1121 powerchair with a piece of paper with what she wants to say handwritten on it.]

Happy International Wheelchair Day!

I am a powerchair usually loved but currently in disgrace.  I broke down twice in 2 days, taking Emma’s freedom, making her housebound.  I’m not lucky enough to be an NHS chair.  Call out and labour will cost £70 + parts – most of a weeks DLA (note from Emma – likely more if parts are needed), financially difficult.  One month ago I had new batteries – nearly £240.  Emma would spend that in a month of taxis if she didn’t have me as she’s not allowed to drive.  I hope she can get me fixed soon.

My manual chair speaks…

[A photo of my manual chair – An Action 3 with a Jay3 backrest – with a similar handwritten sign of what it wants to say on it as above]

Happy International Wheelchair Day!

I am a much loved manual chair, a fact that makes me happy inside.  Before Emma got me she she took a lot of codeine for hip and back pain.  It would knock her out.  Her old manual she bought herself and it wasn’t supportive enough after six years.  I’m an NHS chair and they made me extra supportive with a £400 specialist backrest.  Emma still takes codeine but hasn’t needed it for weeks (note from Emma: probably two or three weeks).  That’s how much of a difference the right wheelchair can make, I’m proud I was that chair for Emma.  Being an NHS chair a lovely wheelchair guy comes to fix me for free.  He came about 6 times in 2010 even for just cosmetic damage.  Powerchair is jealous of me – free repairs mean I’m better looking!  I’m jealous too though.  Powerchair’s batteries mean she goes out with Emma.  As a manual I’m mostly a house chair.  I’d like to see more of the world than this flat and Emma’s Dad’s car.