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....

Saturday, 17 December 2011

Not the best of Anniversarys

Six years ago yesterday (16th December) CRPS decided to knock on my door. It feels a lifetime ago, and in some ways it literally is, bearing in mind how completely different life is for me now. I generally hate this time of year because lets face it getting CRPS isn't really the sort of thing you celebrate is it?

Spare a thought when you're having a fantastic time this Christmas, for those people for whom it is the same as any other time. A time when you just try and get through each day before taking on the next. There are so many people out there worse off than every one of us. I, for one, hope everyone has as great a Christmas as they possibly can....

Wednesday, 14 December 2011

Oh no, not a cold!

Let's face it, having a cold is a miserable experience for anyone. The tiredness, the 'bunged up' feeling, being cold or hot, headache and so on. Spare a thought for the CRPS sufferer or anyone with a chronic condition for that, matter. Not only are you trying to cope with the pain and everything that you deal with on a daily basis, but you now have all that a cold throws at you on top.

This is what I've been struggling with for the last week and a half. Of course my medication helps to a certain extent. The codeine in the co-dydramol stops the runny nose, but you are left feeling thoroughly congested and foggy headed. I slept even more than normal, losing complete days in the process. I never sleep in the evening, so that hopefully I don't wake too many times in the night. That went out the window, so that I was awake when I should have gone to sleep!

Having a cold makes life completely impossible. I have been totally exhausted so we haven't even thought of going out. My balance was even worse than normal, making even standing up immeasurably harder. I felt utterly awful and of course couldn't keep my mind off the pain as well as normal. It pretty much wiped me out, so I could only manage to do puzzles, reading etc. for a few minutes before having to give up. Where I normally play a video game whilst Eric is out walking the dogs, I went to sleep with the controller in my hand, only waking when they came back. It is so hard to adopt the usual pain minimising strategies when you can't think straight. It's hard enough at the best of times!

I can't get rid of the damn thing either. Was feeling a lot better at the weekend so played tennis on the PS3 Move on Sunday. I had been itching to do something as it is so incredibly frustrating and boring just sitting in this chair all day, all night. Didn't play for long but realised it was a mistake almost immediately I'd finished. Felt as bad as ever and still do as I try and write this a couple of days on.

Of course my legs have misbehaved as much as ever, with my feet lurching from ice cube cold, to furnace hot seemingly at will. As long as all the usual stabbing, burning and any other types of pain you can think of. And the swelling, etc

This is the first time I've had a cold in as long as I can remember. I certainly don't want another anytime soon..

Friday, 9 December 2011

My four legged carer

I thought it was about time I wrote about Bella, my wonderful Border Collie. I have had a dog in my life since I was seven years old, but Bella is something else. We got her back in July 2004 as a pup, as a retirement present for Eric who managed to get early retirement and escape teaching. Of course that didn't pan out as we'd hoped with me getting CRPS a year and a half later. Six months later we went back to Wales to get another Border Collie puppy, Kayla. She was to become completely bonded to Eric whilst Bella became totally and utterly bonded to me.

We played rough and tumble, fetch, went on walks. Did all the things you do with a puppy, training etc etc. Then everything changed for her. Firstly I was in hospital for several days, which she didn't react well to. Then when I was back at home I was different. Gone was the mistress she knew, that took her for walks, played with her in our active and boisterous way. Instead mistress was confined to the sofa, and later a reclining chair, couldn't move much and was just different.

Bella, avoiding my legs as is the norm
From that moment on, she has adapted to my situation and as near as damn it, become my four legged carer. She is never far from me, indeed the vast majority of the time she lies across my lap in my reclining chair. She is incredibly protective, has a canny knack for not touching my legs either when she is lying on me or when she jumps up or gets off. I can ask her to turn round as necessary and she is always incredibly careful and gentle. We now play with her lying on me, or she stands with her front paws on the arm of my chair and her back paws on the arm of the sofa. We still manage fetch and when I do occasionally get out on a walk with them she absolutely loves it.

What really makes her special is the way she regulates me. Sounds unbelievable but she does. A typical example is when I do some gardening. She will come out with me initially with me but then goes back in the house. She will then come out again a bit later to see me and again returns to the house. Nothing unusual there. A bit later however she comes out and refuses to go back in. She just stands next to the wheelchair looking at me. It is almost as if she's saying 'right that's enough, time to stop now'. She impatiently waits whilst Eric helps me back into the house and out of the wheelchair. Once I'm back in my chair, I get thoroughly licked. She reacts the same way when I play tennis on my PS3. She toddles off upstairs as soon as I start, but again she will come down as if saying 'enough now, time to stop'.

When I go upstairs (as little as possible as I have to drag myself up there) she always comes with me. Our stairs have a landing halfway up. From wherever she is, she will get up and goes and stands on this landing. She waits there for me until I get there, then she goes up to the top landing. Again she waits for me. She then waits for me to get back to the stairs. Only then does she go down. The only time she goes down without me is when I have gone up to have a bath. Every other time the routine is the same.

Bella gives me so much love, encouragement and protection. She is an exceptional dog, and I simply don't know what I'd do without her.