Saturday, 31 December 2011

What's the point?

Is it the time of year? You feel more reflective than normal, looking at your life, taking stock? Comparing it to others? Probably, but for me, it also represents another year of living with CRPS. I generally pride myself on being positive, trying to make the most of the lot I have been dealt. Always seems to fall apart at Christmas, especially when friends come round.

Someone who also suffers from CRPS mentioned on Twitter that they hate this time of year because people they havn't seen for ages ask how they are and they found it easier to just say that they were fine. I can empathise with this as it happens to me, even with people I consider close friends. I have no idea what to say to be honest. How can you put in words what I go through, what my life is like, my pain and everything else? It sounds ridiculous to me and I'm the one suffering it! If I do try there tends to be a pregnant pause where they don't really know what to say, feel awkward or whatever. I can't blame them, would I be any more coherent were our position's reversed? I would like to hope so but who knows? Inevitably our chat rapidly turns to what they've been doing, their problems, how rubbish work is, the normal worries and troubles of life. It is so nice to hear about the 'normal' world, especially as mine is anything but. Sadly it also serves to remind me of all that I have lost. I support them as much as I can. Wonder if they realise how much support I need to get through the days, weeks and months?

I think people find it hard to take on board the fact that I'm no better now than I was the last time they saw or spoke to me. That I'm stuck like this for life and there is no cure. That I won't get better. I find it hard enough myself at times!!  Unless you lived with me, there is no way you could comprehend just how little I can do for myself, how much help I need to do anything. Without Eric's constant attendance, love and support I could not exist. Couldn't prepare food for myself, leave the house, do any housework, however trivial. Couldn't manage my personal hygiene, dress myself etc. I am trapped in a prison consisting of my electric chair and the living room. The only other rooms I access are the toilet and bathroom. Oh and the garden but that is in itself a military operation. I could order food online but then couldn't get to the front door to collect it, nor carry/unpack it anyway as my arms are busy trying to keep me upright by holding onto whatever is nearest. I can't do this for more than minutes anyway before the pain is too unbearable that I must sit before I fall over. How do you put that into words? That for me, going out to a shopping centre for a couple of hours is a major achievement which will take me days to recover from. Only somebody completely insane would put themselves through what I do to go to speedway. What does that make me then? Answers on a postcard... 

I know that people care about me but I feel I have to shield them from the degrading nature of much of my life. A couple of friends looked after me 24/7 for a couple of days when Eric had his broken arm operated on. My friends had to empty my commode, can you think of anything worse? It certainly gave them an insight. I did as little as possible as I was so embarrassed, mortified even that they had to deal with my daily needs. Didn't wash, just watched TV and chatted. Oh and of course slept because it was so tiring talking so much when normally I don't. They were wonderful, staying throughout the night to ensure I was ok. They did all they could to make me feel better. My upper body strength is significant now so I regularly pulled them over as the helped pull me up out of my chair. The whole thing was just awful, I didn't want my friends to see me like this. Would it have been easier with strangers? Don't know as we receive no carer support at all, apart from money to pay for 2 hours of cleaning a week. A godsend for Eric but frankly a drop in the ocean when he has to do everything.

So, to my fears, worries or whatever you might call them that seem to force themselves to the surface at this time of year. As always I shall just shoot from the hip. Let us start with my future existence. I am 41 in February, Eric is 65 in April. I'm sure I've said before that I always saw the future as me looking after my wonderful little man when the time came. The age gap has never bothered me, he is my soulmate, the man that I want to share my life with till death do us part. He is the only man that has ever had a place in my heart, my one and only boyfriend and subsequent husband. No-one could fill his shoes, they broke the mould when they made him. Looking into the future is strange. My life will effectively end when I lose him (assuming he goes first, no guarantee of that of course). I accepted long ago that I will end up in a home somewhere as there is no way that I could cope with even the most basic tasks of living. I can't even make it into the kitchen, let alone do something productive when I get there for example.

We have no children, and I have no family. My options therefore are somewhat limited to say the least. I either have to employ someone to be a full-time carer or be put in a home for people with similar needs as I have. Bizarrely, or perhaps not, my main concern is whether I could have a dog. Can't imagine life without one after all these years. I honestly don't care where I end up, won't be life without Eric anyway, so just somewhere to see out my days. I have thought about Dignitas, but how would I get there and for that matter who would take me? Eric wouldn't want that anyway, and I couldn't let him down. So the house will get sold and the money will pay for my care. Until it runs out and then who knows what happens next? A little worrying when you see the state lf some of these places but if that's your only option what can you do? What is certain is that my future will be a lonely and painful one where I have little say over what I do? Is it any wonder I generally bury such thougnts as deeply as I can?

I try not to think about the number of years ahead of me. 30 years, 40 years, who knows? Facing the same daily battle with my condition. Daring to defy CRPS, only for it to bite back even harder. Forcing myself to do things that I know I will pay for tomorrow or longer. That all too familiar 'hit by a bus' feeling you get for daring to do something that most would take for granted. The constant pain, exhaustion and sheer frustration of it all. People talk of 'flare ups'. I don't seem to get those, there are no better days. My CRPS is relentness, unforgiving and doesn't give an inch. That's why I try to remain positive. Tomorrow is going to be like today or worse, so feeling sorry for myself or feeling down isn't going to make a blind bit of difference. Get on with it and do what I can, that's my philosophy.

This time of year always makes me maudlin. New Year? Pah! Just means there's another one to get through, with everything that entails. It is incredibly frustrating to lose your independence so completely that you are totally reliant on one person to exist. Thank god for Eric, whose boots would be incredibly difficult to fill, nay impossible.

New Year's resolutions? Keep sticking two fingers up at CRPS, continue to keep all of the above out of my thoughts till this time next year and do all I can to ensure Eric's life is as happy and fulfilled as possible....

1 comment:

  1. Hi Jane.

    I just read your post and it moved me, mostly because I can relate to your life (crps, having a wonderful irreplaceable boyfriend) and I am thinking about dignitas. I just turned 23 and although I was only recently diagnosed in April, this disease has sapped away at anything and everything that made life enjoyable. I so wish that more research was carried out so at least we could look forward to a cure.

    My doctor (dr goebel in Liverpool) says crps is often treated successfully within the first 6 months. He told me 85% of patients recover. I couldn't believe what he said (and still don't really, mainly because everything you read on the Internet is negative !) but I will try nerve blocks and if they don't work I'll try for dignitas. How can everything change so quickly? I really feel for every crps patient that exists, it is soul destroying and although I have sadly lost my will and given up hope, the people that do fight it for years or more really amaze me :)


Comments are always welcome....