Working out how to achieve something is sometimes harder than doing it. I come across this every day while surviving M.E., the quick mental flash down (for given values of quick) that allows me to work out if I'll be able to lift mug from table to mouth and back again. Every movement is planned in advance, nothing left to chance, even walking a few steps unaided to get from sofa to loo on a better day is preceeded by a visual floor check and a mental tally of oft-used hand holds on chair wall and sideboard.
The OT has visited since I wrote my Letter to Mr Mundell in November but it hasn't really made huge leaps of change. A kettle tipper which actually made me more liable to spill water because of the angle. A set of legs to raise my sofa which I love because it does make it easier to get in and out. A special seat for the loo to save me sitting so far down that I get stuck, or misjudging and bashing the loo seat - I've broken more loo seats than I care to remember.
The one thing that has made a difference is my wheelchair. I was pleased as punch to finally get the wheelchair I'd been asking for since 2005, although I knew that in reality it wouldn't make all that much difference. Does that sound contradictory and ungrateful? Should the wheelchair not make a HUGE difference in my ability to get around? Am I being negative and proving that I do in fact need CBT?
In the house the wheelchair is pretty much useless. My house is not wheelchair friendly and I just can't use it to get anywhere. I struggle on as I always have. That doesn't mean it can't be used to get me out of the house though does it?
Let me explain a little about the practicality of getting out and about in a wheelchair. I'm a fair to competant driver when I'm fit to drive and I am seriously tough on myself, always erring on the side of caution, to such an extent that at the moment I probably haven't driven for over 6 weeks. I drive a little VW Golf that I love dearly and I am Blue Badged which means I can park close to where I want to go.
So I decide I'm fit enough to go out somewhere, I'm ok to drive. My first hurdle is getting my wheelchair from my kitchen into the back of my car. And there I fail unless I have help - a Big Society (What rubbish! My neighbours and friends have been helping me out for years) helping hand from a neighbour or friend or even the postman. From there I fail again unless I have help because my garden gate must be opened and I can't do that myself. Then I drive to wherever I'm going, lets say I'm going to Dumfries to buy something nice to send to my Dad for his birthday in May (and I'm not using shopmobility this trip just to make a point) I get to Dumfries and Park. There I'm stuck until some kind person lifts my wheelchair out of the back of my car and sets it up for me.
And then what? I can't move myself in it. It gets far to sore on shoulders and arms, my grip fails, I end up just as chalky white, dizzy, sick and exhausted as if I were walking. The physical effort of pushing myself any distance at all is too much. So I am just as trapped as I was before I got my wheelchair when I'm on my own - remembering I have no carer - there is a difference though. When friends take me out I don't have to spend energy walking around. I can be pushed, even where I can't get a shopmobility motorised chair, and that has made things a little easier for me.
How much does shopmobility make a difference? Actually it makes a big difference. But I still can't do it solo very often, the tolls of driving and running round in a motorised chair is still often too much, but it is in fact my only way of getting to go out solo. As much as I love my wheelchair it hasn't allowed me any more independance than I had before I got it.
Here is where I would usually come up with a solution, an answer. But this time I have none. The DSS won't fund a motorised chair. Social Services won't move me into different accommodation. Even if I had a motorised chair I still couldn't lift it in and out of the car and the days on which I am fit to drive are unlikely to increase. So there you are and here I am. Reliant on a network of friends and supermarket deliveries for everything I need.
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