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....

Thursday, 1 August 2013

Eric's hospital appointment and it's implications....

Feeling lousy but have to put an update on here.... thanks for all the lovely messages on FB, mean an awful lot :-)

Massive implications as a result of Eric's hospital appointment.

The Consultant he saw was absolutely excellent. She proposed (and Eric is going for it) to open up the arm from shoulder to elbow, remove the pin, shorten his arm slightly by removing the end of each broken bit of bone to give nice fresh ends. Then she will take a bone graft from his pelvis, together with as much donated bone as she can. Get the ends of the bone absolutely lined up, pack all the bone bits in and screw and plate it all in position.

Big operation, but he is too young for the prosthesis option and she believes that she can get it to heal. She is basically going to set up the broken bones in the best possible way, doing everything available to give it the optimum healing environment. He has none of the indicators which would suggest the bone won't heal apart from his diabetes so she is confident this will work.  He will also have the arm put in plaster so that the straight position is maintained. We're looking at him spending a couple of nights in hospital after the operation unless he bounces back in which case he could come home the next day. He did the last time so fingers crossed but this is a much larger operation. She is superb, we have the utmost confidence in her. If she reckons she can get it to heal then we have to go for it.

She is very worried about the fact that the pin is basically rattling around inside his arm, and it is likely to break very soon. So until the operation he is not allowed to use the arm apart from when he has to help me. She made it patently clear that if he carries on using it, it will break again and that will make her job so much harder.

Her normal waiting time is 12-14 weeks (yes, really that short!!) but she wants to get him in as soon as possible. We're looking at September as she is fully booked in August. I'm sure she'd have got him in sooner if she weren't already booked solid.

And here's the real headache. He will not be able to do anything with the arm for 3 months after the operation. That is absolutely nothing, not even to help me. She's acutely aware of the situation and has already said that their Occupational Therapists and Social Services will get involved. She also wants us to speak to our GP and try to get help organised at this end. Our GP is useless, and we've had no support from Social Services before now other than to pay for some cleaning so it looks bleak at this end. Realistically we are going to have to get on with it ourselves. Eric is my full time carer, helping me 24/7, although I desperately try to keep asking him to do things. How is that going to work when he can't do things, and I won't be letting him that's for sure! Carers can't be here all the time can they?

I feel utterly impotent. I should be able to take over doing everything, meaning he can just sit and rest the arm, up till he has the operation and the 3 months or more afterwards. It is at times like this that I detest CRPS, being disabled more than ever. Eric has enough on his plate having the operation, without worrying about who is looking after me whilst he's in hospital. Who will take him there and pick him up? I can't which infuriates me even more!!

We've already thought about lots of ways we can try and get through. I have been looking online and have found a riser recliner that looks really comfortable. That will save him having to pull me out of my chair. Won't make me independent as my balance is awful. At least it will mean it is just a case of shuffling along with me the few feet to the commode for example. Going to get another electric wheelchair so we have one in the house and the car so he doesn't have to get it in and out. Obviously we won't go out unless absolutely necessary. Thank goodness we have some savings!!

So there we are. Eric has a fantastic chance to regain full use of the arm. Life will be difficult in the extreme when he goes in to have it and of course during those critical 3 months and beyond. I have absolutely no idea how we will cope, especially as I only have one decent arm to use. We'll muddle through somehow. We have to.....