Tuesday, 13 August 2013

What's the point?

A very good friend said to me the other day 'Don't you get tired of the constant battling, don't you ever feel like giving up?'. The immediate response to that is of course NO! It got me thinking though. Why do we keep going, despite having a shockingly bad quality of life? My conclusion is that it really Isn't that black and white after all......

Do you reach a point where you've just had enough, can't take any more and want to get off the roundabout of life? Those times when perhaps you're stressed out, work is a nightmare plus you have way too much on your plate with family commitments as well. You're chasing your tail, getting nowhere fast. You may declare yourself depressed. Who am I to knock you or your circumstances? That is neither my place nor intention.

Life for us 'shirkers', or so we're labelled by the Coalition Govt, is easy. We could go to work we just chose not to. They just about manage to hold back from saying disability is a lifestyle choice. That day may yet come, god forbid. The implication is there though in the descriptors that define ' fitness for work'. They serve to define genuinely, chronically and terminally ill people as fit for work. The inhumane work capability assessment reinforce this because it is unfit for purpose. Similarly, disabled people have to be so bad that their quality of life is utterly compromised. I am 'lucky' enough to be one of those whose disability makes any semblance of normal life impossible so I get ESA. There are many who have committed suicide because they were deemed 'fit for work', had their benefits stopped and saw no future. It Is So sad and utterly wrong in a country as 'advanced' as ours.

From personal experience I can honestly say there have been times when I could and indeed have gone as far as to plan my own suicide. That sounds shocking doesn't it? It does to me as I sit here writing this. What could be so bad that you would want to take your own life? Give up the fight. Take the easy way out as some would see it?

To try and explain let me describe what my condition has done to me. You see it isn't just about being ill. A chronic condition such as CRPS does so much more. It stripped me of everything that defined me as me. Well that's how it felt. You see it isn't just the obvious things such as being in constant agonising pain, the disgusting swelling of the affected limbs, the horrendous allodynia meaning the gentlest of airflow induces even more pain. Or that your ability to move is completely compromised.  All of that is bad enough but that is just scratching the surface. It meant I couldn't work, took away my independence. Worst though it took the very sense of who I was and threw it out the window.

That in itself is bad enough. Having to be cared for 24/7 by your husband, the man who was once your lover, still is your best friend, the man you adore and love more than anything else in the world is I think the worst thing about being disabled. He has to do things that nobody else should have to for someone else. Be on call all the time, whenever I want anything. Never able to go out and do anything for any length of time because I may be sitting at home needing a pee or the dogs need to go out. Or something has happened and I can't do anything about it. Even at home his time is not his own. Take archery for example:

If I want to do archery it is a military operation for him. He has to move stuff in the kitchen to open the patio doors fully. Get the wheelchair from the kitchen, put the leg rests on and set it up so it is as close to my chair as possible. Then he has to help me put the bow together, carry it into the kitchen plus other bits and bobs. Get me changed into archery clothing, move the commode and help me up to use it. Put my shoes on, get the fleecy thing organised on the wheelchair. Help me off the commode and into my chair. This is the first time I can do something completely by myself - pootle the short distance into the kitchen. Then more help. Lift the leg rests into position. The quiver lives in the the kitchen hanging off the workbench. He will replace the target face as necessary, pass me my bow, organise the dogs into the living room. Even then his work isn't done. He has to wait for me to shoot each set of 6 arrows then trudge down the garden to collect and call out the scores. He can't do anything else really so sits on a stool in the kitchen reading a book. And then of course he must do everything in reverse when I've finished.

I hate sitting in my chair watching him get things ready. It is both incredibly frustrating and depressing in equal measure. I hate being such a burden on him. I would give anything to be able to do everything myself. Obviously it would be even better if I was able bodied full stop!! This is especially true when you consider Eric goes into hospital to have the arm he broke in 2009 operated on again to hopefully get it to heal properly. Yes he has spent the last four years looking after me with a broken arm! He just gets on with it. I should be looking after him, yet instead he is worrying about who will look after me!  I should be spending the next three months doing everything. Making life as easy as possible for him so he doesn't use the arm at all. But life for us isn't like that. We will muddle along together. There is nobody to help us. As always. l simply can't put into words how useless and inadequate I feel that I can do so little to help.

At the start I posed the question 'Don't you get tired of the constant battling, don't you ever feel like giving up?'. Forget about my battle to try and forge some sort of quality of life for myself. Doing what I can despite what CRPS throws at me before, during and after. When you have a husband who does so much, without complaint and always puts me first despite my protests how could I possibly stop fighting? l can't give up, that would be unforgiveable....

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