You Know You’ve Got CP When…

…the shoes you call your ridiculously impractical shoes are the same sort as your able-bodied sister and mother frequently wear as sensible everyday ones.

For years I’ve lived in trainers. But only a specific sort. So much so that the pair I have now is at least my third identical pair but come to think of it is probably actually my fourth. And I should probably buy a new (but still identical pair) because no matter how many times I look for something different I can never find it. The idea that Skechers might one day discontinue them secretly fills me with horror.

Because no one else does shoes which
Are supportive
Undo completely and very easily
Have no form of heel
I can wear without socks regardless of the time of year
And are deep enough to accommodate my often very swollen feet.

Its no secret that I’m not a fan of shoe shopping and that shoes hold no real appeal for me. The more often I can go barefoot the more I like it.

But a few weeks I went shopping. I needed new black trousers and I was beginning to think a spare pair of Skechers would be an idea. My current pair probably have a few months wear in them at least but having worn my last ones until they fell apart and then for several uncomfortable days after as I literally had no others, a spare seemed a very good idea.

So I’m in Evans getting trousers (and an unplanned but gorgeous top) and I’m looking at shoes because you never know. And I spot a lovely pair of ankle boots.

Several years ago when I was at uni I did have a pair very similar I wore often. My shoe related issues weren’t quite so extreme then but you know it’s still possible…

So being that I’m unable to try shoes on when shopping I check if I can return them if they don’t fit then buy them. And I don’t want to try putting them on myself first in case they don’t fit (my unusual shoe putting on techniques can batter a bit which isn’t good if I’m returning them). A quick phone call to my sister telling her I’ve bought completely unsuitable shoes follows.

She asks in what way they’re unsuitable and I’m like
“They probably won’t fit but even if they do I probably won’t be able to get them on myself and even if I can I probably won’t be able to transfer in them.”

And she’s all “oh in pretty much every way then.”

I popped up to see her and she informed me they aren’t shoes, they’re boots. And then helped me try them on and surprisingly they fitted. They didn’t quite zip up to the top but its not an issue.

Eventually a long while later I sit on my bed and try them myself.

It’s sort of like
I know they fit.
I know how they should go on
But I can’t work out how to put them on cripple style

And as much as mum told me to take them back I’m keeping them. Because every girl needs a pair of ridiculous shoes. Even if they are meant to be the sensible type shoe.

(I was going to end this with something I’ve heard a lot which is that every girl should have a pair of shoes she loves but can’t really walk in. But you know in my CP world that’s pretty much every single pair of shoes I’ve ever owned so I thought it too obvious).

>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.