Making a Difference

I was rereading some old blog entries earlier. I was planning to write something (not this post) and I thought maybe I’d written about it last year. I didn’t find anything but what I did come across was this post. I thought it was kind of apt given a piece of news I received today.

After three and a half months I finally received my new wheelchair cushion. It’s strange. It’s good and it’s comfy. But it almost feels off. This is set up differently to my old one and I’m not sure if that’s why (I have the stuff to change the set up to my old one if necessary), if its because it needs to learn how I sit or if it’s just because I spent the last two months with makeshift temporary cushions.

In the box with the cushion was a 20 page instruction booklet in 8 different languages. And an envelope with my name on it marked “private and confidential”

It was a letter. One with information about my cushion.

And then acknowledging the complaint I made to PALS about my five hour round trip to wheelchair services when they didn’t have my cushion in yet. They’re sorry but hope I did find some use in the appt (uh… Not so much).

Finally it said they’ve had a meeting with their administration team and put a system in place. One that will make sure what happened to me won’t happen again. I’m pleased. In fact I’m really pleased. If the system works and I truly have made a difference for other patients that’s huge.

But as I wrote in the entry I linked above for once I’d like not to be the one who is first and discovers a problem or the one who has it last and finds the solution. I’d like to be the one who came next.

Still, there’s always next time. Or the time after that. Failing that there’s also the time after that. Because god only knows the disability related fuck ups aren’t going to stop happening.

Maybe just once I’ll be the lucky one.

Someday.

Conditions of Loan

I’m going to start this entry with a Facebook status I posted on Friday. It’s the easiest way of cutting a very long story short.

Requested a new wheelchair cushion. Waited six weeks and got sent part of a wheelchair cushion. Took the old disintegrating one apart and tried to fit new part to still working bit of old cushion. They’re different sizes. Couldn’t put old cushion back together as taking the cover off caused the gel to completely disintegrate. Covered in gel as is my floor. Called wheelchair services. They promise to get me a full new cushion with inserts. Manage not to shout at the OT about maybe taking eight weeks to do so. — feeling Aggravated.

A couple of points here before I get to the point of this entry:
The wheelchair cushion I use is a Jay 2. Getting only part of it is possible because it’s made up of a base and then various bits which are used in different configurations. I have the base and three other bits.

The day before the mobile technician came out I had a letter from wheelchair services listing what they were issuing me and enclosing the conditions of loan. These are standard and refer to a wheelchair throughout.

Being a wheelchair services veteran I’m well versed in these conditions. They do make for interesting reading. Some highlights:

Give it back or give it in for repair if asked. Yeah ok, I can do that. But I’ll need a replacement if I give it back or a courtesy chair if it’s being repaired

Keep it clean. I’m not good at that. My wheelchairs are generally in need of some sort of clean. I should work on that. On the other hand I’d rather be out sailing and shopping and going places and have a battered, filthy chair than a pristine but hardly used chair because I’m not doing things.

Let them know if I no longer need it so they can reissue it to another user. Moot point for me and anyway the majority of my mobility equipment gets used until its dead and fit only for scrap and very possibly for spares.

Inspect for damage and report repairs. I do this to an extent. My clothes guards almost always have damage because they are flimsy plastic and a silly design that works well for what it does but doesn’t have the staying power it could do with for how i use my chair/transfer. Surface cracks are practically a design feature on my ones. It gets beyond that I get them changed. Both were changed less than two months ago. Both have been cracked or a week or two. It’s cosmetic so I’m leaving it.

The wheelchair is only to be used by you. Damn right it is. I absolutely cannot stand anyone else using my chair or even touching it. It’s part of my body, leave it alone.

Tell us if you emigrate/move/change your contact details. Yeah ok.

Tell us if you go abroad. I think on previous versions years ago this was “don’t take it abroad”. So this is progress. But oh no, no, no, no. I’m not going abroad anytime soon but if I was I wouldn’t do that.

A lot of this is common sense. But I think it misses the most important thing.

Use the equipment. Use it for what it’s designed for. If you’re feeling adventurous try something different. Something that maybe wheelchair services or the manufacturer would think it can’t do. Get out there. Live. Enjoy it. Be free in a way you couldn’t before you got the chair.

>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