Thursday, 12 July 2012

A complete lack of independence

You don't realise just how much you take something for granted, yet rely on it so completely, until it breaks. Such is the case for my electric reclining chair. When I started this post a day or so ago, largely as a distraction technique for the pain, I was feeling about as bad as I have ever felt since late 2005 when CRPS struck.

It may be difficult to understand why my chair is so important. Normally you sit down without thinking. Indeed during the course of a day you'll get up and sit down countless times. At work, at home, in the car, on the bus and so on. By contrast I live in my chair, day and night, apart from when we go out, I have a bath or I go in the garden. Sleeping in bed has been impossible for years, so my chair becomes my bed at night. The back goes down more than normal, we add a pillow and I'm set for the night. It is the most comfortable place in the world, the only place where my pain eases to the lowest level it can become. It is the place I yearn to get back to at the end of a speedway meeting.

It was absolutely devastating on Friday when I pressed the button and nothing happened. It is hard to put into words my feelings when I realised that the chair was broken. Initially you panic, 'oh God, I can't get out of my chair' and 'what the hell am I going to do now' but this is quickly overcome by more pressing thoughts of 'I have to get out my chair or I will end up wetting myself'. The latter focused the mind rather quickly! 

So how do you get out of an electric chair that won't work and is stuck with the leg rest up? Tricky if you're able bodied, but imagine my situation, where my legs are a pain in more ways than one and my balance is rubbish. Plus if I end up on the floor there is no way I can get myself up, even with Eric's help! Leaning forward was out, I'd have ended up in a pile on the floor. No, the only way was to bail out sideways, over the arm. Those of you who follow me on Twitter will have heard me talking about my 'gymnastics'. Well this is what was involved!

1. Use arms to push myself round so that my legs are really close to the left arm of my chair.
2. Eric carefully lifts left leg onto arm of chair.
3. Use arms to re-position myself so that I am now facing left.
4. Eric carefully lifts right leg onto arm of chair
5. More shuffling about using arms to get my legs as far over the arm as possible.
6. Try and find something to hold onto with left hand. Never really successful!
7. Push myself up using my right arm..Tough as my bottom is below the arm of the chair
8. Eric supports the chair so it doesn't topple. Keeps me from sagging back down.
9. Good push off with right arm, plus Eric pushing, I end up on arm of the chair.
10. Eric dashes round chair and helps me to stand. Both breathe a huge sigh of relief!

Thankfully gravity helped getting back in. Sit on edge, let yourself fall back. Use right arm to rotate body so legs land in the right place. Easy, well easier...
I lost track of the number of times we had to do this between Friday and Tuesday morning when the wonderful man came to fix my chair. What was surprising was how easy it was from the upper body point of view. I must now be so strong from years of my arms doing the work my legs should. Unsurprisingly the toll on my legs was severe in the extreme, with swelling appearing on top of swelling on top of... well you get the picture. I rapidly reached the point where I couldn't weight bear because the legs were so bad. I don't think the pain has ever been as bad as it was. Oh and of course I'm being suitably punished now! As always we worked on our technique, improved it, and got it off to a fine art in the end. As with everything, humour got us through. I can only imagine how ridiculous I must have looked. Don't think the engineer who came to fix it understood why we were both so incredibly grateful. Probably just as well!

The whole episode has made me realise just how vulnerable I am, and how I am totally at the mercy of the equipment I use. It turned out that the cause of the failure of my chair was it's power lead that had somehow got trapped and been rubbed right through. If that had caused a fire when Eric wasn't here, I wouldn't have got out. Simple as that. A sobering thought.

It made me acutely aware of just how restrictive my life is. I am used to (if you ever really are) being housebound, apart from the few occasions we go out. Of course I wouldn't manage to do anything were it not for Eric. But I became completely imprisoned by my chair, unable to even contemplate going in the garden or going out. Couldn't do anything other than use the commode. A pretty miserable existence.

As a rule I try not to think about the future. The age gap between me and Eric means that at some point I will be on my own. We have no children, so it will just be me. I've already accepted that I'll end up in a care home somewhere, how on earth could I continue to live here? It wasn't a pleasant thought at the best of times, but losing power to my chair brought home just how awful it will be. Just how reliant I will be on the staff. Being completely trapped in my chair, essentially being left to fester. Eric does so much to enrich my life, but even he couldn't do anything when my chair gave up. You hear horror stories about people in care homes being left to soil themselves and goodness knows what else. Is that my future, what I have to look forward to?


  1. I'm glad your chair is fixed now Jane. It could have been so much worse...
    As for ending up in a care home, I'll come and help/visit/room share...

  2. We will choose a brilliant care home together and we will create absolute chaos. It is frightening when things like this make you once again aware of just how reliant you are on people/things to live day to day but you did what you always have done and always will do and that's get over/around it and cope....good on you. X

  3. that was scarey and i can see how vulnerable my husband would feel and be if his chair broke where he sits and sleeps. Glad you have a supportive hubby i try to be.


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