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.

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!

>My new powerchair

>[I’ve been trying to upload this with photos in it for two days now. For some reason it wouldn’t work so I’ve deleted them and will share them some other time. Just pretend there’s photos of my awesome chair in here]

The new powerchair is great. I’m really enjoying it. Getting sick in the first week of having it and not being able to use it for a few days is seriously unfair. But such is life.

There are a few small niggles but none are a big deal.

One is that I had planned to use my Jay 2 deep contour cushion that I have in my manual in it too. But the chair is higher than my manual and they weren’t joking when they named the cushion deep. It’s huge. But oh so comfy. And with it in the Salsa I ended up with bruised knees and couldn’t get under tables. So I switched to my old wheelchair cushion which is a lowzone on. That’s much better for tables etc. just after a couple of hours it gets a little uncomfortable. Not a big deal but something to think on.

And the second is I keep pressing the wrong buttons. Because I do it without looking and press the one that it would have been on the jazzy. Totally a muscle memory thing and really minor. I find it interesting.

The silver footplates have grown on me. I’m no longer looking at them and going “ugly ugly ugly!!” but at the same time I’d have rather had them red like the rest of the chair. I really like the red but an actual choice of colour would have been cool. Purple or turquoise were what I’d been thinking about.

The extra speed rocks (most chairs do 4mph max, this does 6mph). Seriously. But legally I can’t use it on paths which means I don’t get to play with it often.

♥ Emma

>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.

>Initial thoughts on the new chair.

>I started writing a longer post about my new chair but for now some brief observations. It’s an action 3 wheelchair (invacare, don’t google it the standard ones look shit) but it has a Jay backrest on it.

I’ve never been this upright in a wheelchair before. It’s really cool. It feels like it stretching my spine out which is probably a good thing. Or at least that’s the best way I can describe it. Also I think it would be physically impossible for me to end up slumped over in this chair.
You know how they say “once you’ve tried…. whatever …. you’ll never go back.” ? This is my first Jay Backrest (specifically the J3 by Jay) and it’s only been a few hours but I’m wondering if that’s going to be the case here.
My therapist was required as part of the prescription to give me a seatbelt, they have to provide them to everyone who they give a chair. The one that came with the chair is the most ridiculous size and she tells me fits no one, she thinks it’s a paediatric one. It’s also velcro which I’m not convinced is particularly safe. The need to go get me a different one that would fit from their store was mentioned. Then the engineer was like “Emma will you wear the seatbelt if we give it to you?” and I was all “no way I think it’s safer that I don’t wear one” (because if the chair goes I get thrown free rather than go with it) so they’ve left me with one fitted that might fit my friend’s all but four year old but certainly isn’t going to be going round me or even around my skinny wheelchair using friends. Still they’ve ticked their box so they are happy!
I find it interesting that given they must provide a seatbelt for safety (even if as in my case the disability doesn’t necessitate it) but that they aren’t required to provide anti-tip stabilisers. They were something else I seriously wouldn’t use (this time from a practicality point of view) but the requirement for one and not the other surprised me. Especially as stabilisers are the one that seem to do more for safety to me.
I got a new wheelchair cushion with this chair. I will however be ringing my therapist for another one to be sent out urgently tomorrow. She forgot what we had discussed and grabbed me a standard foam one (not even memory foam!) from their store and said I might need something better but to try it for a few days and call her. I’m used to just gel for the last year or so although I have used memory foam and also gel/foam combo cushions before – the gel/foam combo was what was discussed at my assessment appt.
Dad and I called into Sainsburys in Oxford on the way home (a long held tradition that isn’t an actual tradition after my rare hospital appts – stemming from the days when we didn’t have a sainsburys here and my parents liked to go there when they could and the fact that today both of us had bare cupboards). We weren’t halfway round before I was like “this chair is really comfy but ooops there’s that numb bum feeling she warned me against getting.”
So to recap: So far I am liking the chair, loving the backrest but hating the cushion. That said it’s ridiculous for me to have this sort of cushion given how long I spend in my chair. I am slightly annoyed with myself that I just accepted the suggestion to try it and see.