I’ve got up every morning for the last week in a cheerful upbeat mood and then, somewhere between the shower and leaving the front door, my heart’s sunk. There’s a very tangible reason for this and it’s not stress at work or the overcast weather. This gloom strikes me the moment I realise I’ve got to spend another day using a courtesy wheelchair rather than my own. For reasons that will become apparent, I’ve renamed this substitute chair The Clunkmobile.
Last week I described how my chair suddenly snapped in two on the way to lunch and how it was taken away to be fixed. Wheelchair Services responded very quickly and provided me with the courtesy chair and I certainly don’t want to appear ungrateful, but using this replacement every day is a miserable experience. It’s having a huge impact on my independence, my mood and my wellbeing.
The key thing is that it’s much heavier than my own chair, which means I can’t really move it by myself at all. Friends and colleagues are used to me wheeling myself around independently but now, every time I want to move I have to ask my support worker do it for me, and I’m finding this ridiculously frustrating.
To many people this change to my independent mobility might not seem particularly significant, but to me there’s a world of difference. Take going to the loo for example – previously I could wheel myself in and get my chair in the right position to transfer onto the toilet, and then when I was done I could turn the chair round and wheel myself out. Now I have to be wheeled in and then I have to get out of my chair and crawl to the toilet. When I’ve got myself back into the chair I have to shout that I’ve finished so my support worker can come and drag me out backwards.
It’s also affecting how easy it is for me to do my job. Every time I want to do anything that involves moving I have to ask – whether it’s using the photocopier, going to speak to a colleague, coming back to my desk, or helping a child who needs something. Yesterday I saw from the office window two children having an argument. Rather than just heading off by myself to sort it out I had to explain to my support worker what was happening before being able to go and help.
One of the most frustrating things is that I can’t even adjust my position to see or hear the people I’m talking to properly. In the last week I’ve often found myself craning my neck at awkward angles just to keep up a conversation.
The Clunkmobile is a lot bigger than my own (which had become an extension of my body) so it feels a bit like I’m sitting in a cart! It’s also much less comfortable and I feel less upright and supported – it’s like the difference between sitting in a deck chair and an office chair. I’ve been tempted to get out of my courtesy chair at work and sit on a normal one, but this would be much less safe if I have a ‘ticcing fit’.
As the name suggests, the Clunkmobile makes a huge range of squeaks, squelches and clunks. This might seem trivial but it makes me very self-consciousness when I’m moving around. At work on Friday I went to the Nature Garden during the Under-5s Club. It was story-time and fifteen tiny children were sitting on the grass quietly listening. I felt really awkward when the noise of me clunking by distracted them. I’m much more embarrassed by these involuntary noises than I am by any of my tics.
It’s not just me who’s finding the Clunkmobile tough going. My support workers are struggling with it too. Yesterday Will said ‘I don’t want to moan about this chair because I can see how much harder it is for you, but it’s very annoying.’
My wheelchair therapist and technician, Maria and William, say my own chair can’t be fixed so they’ve ordered a new one. Although they understand how frustrating I’m finding the substitute there’s very little they can do to speed up the process. They can’t tell me how long it’ll take to get the replacement but I know from previous experience it’s a case of weeks, even months, rather than days! The prospect of spending the summer using the Clunkmobile is making me feel pretty dismal.
I’ve got lots of exciting plans for the next few weeks but I know that I’ll experience them very differently if I’m not using my own wheelchair. I’m feeling a type of disappointment that’s probably reserved for breaking a limb before a big holiday.
The optimism and hope that the power wheels brought has faded because we can’t make any progress with them until I have my proper chair back.
But of course the Clunkmobile is way better than no chair at all particularly if I can adjust my expectations to fit the chair.