What I really need….

I used to have a great wheelchair. I used to have a wheelchair that was perfect for me.I used to have a wheelchair where I could adjust the angle of the back whenever I needed to and have it at whatever angle was comfortable.I used to have a wheelchair where I could adjust the position of my feet to wherever I needed them to be. I used to have a wonderful wheelchair that I found easy to drive, that I could manoeuvre into the wheelchair space on a bus without a problem, that went at a decent speed, that was my lifeline.

Now I don’t.

My old wheelchair was one that I was able to buy privately through something called the Access to Work scheme because it allowed me to be able to go out and earn my own living. Now that my medical condition has worsened, and I am not able to work any longer, I am forced to rely on the National Health Service for my mobility equipment.

And I am not happy.

The chair I have now is perfectly serviceable, don’t get me wrong, I’m not entirely ungrateful for it, after all, if I didn’t have it I would not be able to leave my home and meet up with my friends, but, to cut a long story short, it’s just not right. From being someone who got and used my chair from early morning until late at night without a problem I have become someone who prefers to stay in bed and only gets up once or twice a week for just a few hours. And it’s all because of the chair.

The problem I have with the thing is that it doesn’t service all my needs adequately. I end up in pain and discomfort and, if I’m brutally honest, I would really prefer not to have to use it more than is absolutely necessary. If sit in it for longer than than a couple of hours my back starts to seize up and I begin longing for the comfort of my bed. I need to be able to do what I used to be able to do and adjust my position whenever I need to. Then my back doesn’t hurt at all. I never used to get backache when I had my old chair, I used to be able to get up early, work for an entire day, go out with friends in the evening, come home and go to bed in the small hours and barely a twinge. I wouldn’t like to try that now. Even if I leave getting up until lunchtime, the muscle spasms around my spine become practically unbearable within two or three hours and I have to go home and rest. No more West End Shows and late nights for me.

Then there are the problems I now have with my legs. Nasty, swollen, puffy ankles and throbbing, aching shins and calves, after no longer than half a day. Pain and discomfort most of the time. With my old chair, all I had to do was push a button and my leg position would alter to make things far more comfortable for me, but not any more. Not with my fantastic new NHS chariot. Leg adjustment, just like positional changes for my back, are now no more than a fond memory from the past.

What I really want, what I really need, is something like my old chair but, unless I come into some unexpected funding, that is just not going to happen any time soon. I know exactly what I would like to have but I am equally aware that, if things don’t change, I am stuck with what I have now for the foreseeable future. I know I should just be grateful and shut up but it’s difficult. Having the right wheelchair for all of my needs would be a dream come true but for now, that’s exactly what it must remain, a dream. Until things change disabled people must go on putting up with the cheapest possible alternative at all times and, until things change, manufacturers will not see a reason to produce anything better. The NHS cannot afford it and, until they can, disabled people will just have to go on coping with the cheapest alternative, no matter how much we need something else

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