Saturday, 23 June 2018

There’s always something to try

Can't remember the last time I wrote in my blog. It doesn't really matter, my health and living conditions remain largely unchanged. My body remains riddled with CRPS affecting both lower legs from the knee down, both upper arms, mouth and eyes. Recently added to the list of ailments are gallstones and a fatty liver. Cheers for that! My mobility remains dire, only managing to shuffle along in the arms of my husband for a few metres at most. Essentially housebound, I only leave the house to go to medical appointments these days. I am stuck in an electric reclining chair 24/7, going to bed as is the norm I believe (heavy sarcasm) is out of the question because it would only ramp up the pain to an even more unbearable levels. My legs are elevated constantly to minimise the pain as best we can. This makes doing anything harder, especially as my upper body has to take the strain. Everything has to be brought to me, housework, cooking or any normal activities are impossible. I have very few hobbies, as I will explain below.

I'm in constant pain, need to be kept covered (arms and legs) by at least a thin blanket otherwise the air movement (no matter how small) in the room makes things worse. Swelling is hideous in all affected areas but my feet in particular look truly disgusting. Purple, blotchy, abnormal nail growth and my toes are curved over to the point I can't see the nails on the right foot at all. The swelling around the outside of my ankles force my feet to point inwards. I can't straighten the right foot nor move the toes more than a slight twitch. I can't push through my ankes or knees, too painful, and struggle to pull or push with my arms. CRPS in the mouth means injections don't work so I had to have a tooth removed feeling every movement she made. Not the nicest of experiences.

I feel stabbing pains in all affected areas, pins and needles that are off the scale plus any other type of pain CRPS decides to throw at me. Eric doesn't know he's even glanced me but it feels as if a knife has been stuck into that area. The sensation remains long after the event. Hypersensitivity makes normal life a literal minefield. Bath water which to Eric feels cold, to me feels like it's boiling hot.  Oh and my limbs can be frozen blocks of ice or burning coals. Or one of each (I kid you not). This can last for many hours or days before inevitably flipping the other way. Just because they can. I get no say in the matter. We can't try to speed the process using hot water bottles because my body reacts in an extreme manner. Enough, you get the picture.

So, it would be incredibly hard to argue that my quality of life is anything other than dire, because all of the above make doing anything at best challenging and at worst completely impossible. Don't forget I've had this 'sentence' for 13 years come December so it's an old enemy, one that is in your face constantly. If I do anything I'm 'punished' by what we call payback. Essentially the pain, swelling and everything else worsens dramatically for hours, a day and sometimes more. Great isn't it? You just can't win but you can fight, which I do every day.

I don't think it would be normal to not suffer bouts of depression faced with what I am on a daily basis. I have at various times sunk deep into the darkness where those thoughts of suicide lurk. Hell I've even thought exactly how I'd do it and when. I'm writing this so safe to say things have never come to that. It would be a blessed relief if I'm being brutally honest, but I couldn't do it to Eric so here I am. So it follows that I somehow have to find ways to give my life meaning, find things I can do despite the problems, challenge myself somehow. At the most basic level I need to try and fill the time when I'm awake in an attempt to take my mind off the pain. Don't forget I am still the same person I was inside, intelligent, driven with ridiculously high standards and can still beat myself up for Britain. 

It is the old me that has meant I've tried new things, refused to just sit and fester. I've always played video games, so every day I play whilst Eric is out walking the dogs. I read and took up knitting a couple of years ago. Knitting has been especially rewarding, I've produced a wide range of things from scarves to cardigans and socks,  all of which I given away to friends or Eric has them. It sounds ridiculous but doing any of these makes my condition worse. I'm restricted to a couple of hours knitting in the evening, any more and I'll be well and truly punished the next day. I can't read for long at the best of times and there are often times when I can't read at all for a day or more. Doing too much for me is a tiny fraction compared to a healthy person.

A friend took me to my first ever speedway meeting not that long after diagnosis. I loved it, the smell, the roar of the bikes, the drama that could unfold over the course of four laps. I didn't miss a home meeting for several seasons but the impact it had on my condition grew progressively more extreme. I remember at the beginning (2006) I could walk extremely slowly with the and of walking sticks to 'our spot' on the home straight. Sitting in the cold wrapped in a sleeping bag didn't do me any good. I was in utter agony but it was worth it. Roll on a year and I was wheelchair bound, Eric having to pull me backwards over the rough ground to get to my viewing position. I was able to have my legs elevated but by the end of the evening I would scream as he helped me transfer from the chair to the car. How Eric got me back into the house and the safety of my chair I really don't know. Trying to stand on either foot was horrifically painful. The slightest movement unbearable and so very hard to make yourself do. I fought on for a few years, by now in an electric wheelchair but eventually I had to concede defeat to CRPS and stopped going. I watch as much speedway as I can on television, even having Polish satellite TV installed. A typical season will see me watch over a hundred meetings from here and around the world. It isn't the same but it's the best I can do.

You see the trouble with my condition is that no matter what you do it pushes back by upping all your symptoms, making doing anything for varying lengths of time impossible. Imagine trying to push a duvet into a bin bag. The harder you push the harder it seems to push back? Even back at the very beginning it would take several days for me to 'recover' from a speedway meeting, I would lose days to sleep and just had to sit it out until pain, swelling etc returned to normal levels. It got to the point that it took me the entire week to recover/prepare for the next meeting. It just became untenable in the end. Watching a couple of meetings one after the other on TV wipes me out such is the hold it has on me now.

Another addition to my small list of hobbies was archery. I actually took it up very early on as I desperately wanted to do some sport and it was something I could do in my wheelchair with my legs up. We couldn't find a disabled friendly archery club back them so I gave up. Came back to it several years later as I found a club that would have me. I got pretty good, all things considered, and put up with the inevitable payback because the pleasure I got made the extra pain etc worth it. Nevertheless I struggled badly, losing the next day or so to sleep. It is so difficult to shoot as I have to, basically sitting on the floor but up in the air thanks to the wheelchair. Able bodied people have it so easy!! CRPS put the ultimate boot in as it moved into both upper arms not too long after I'd started shooting again. I think I only managed one season where I shot longer distances well over at the club’s field. The range of movement in my shoulders and arms worsened because I couldn't push through the pain, making shooting harder than ever. I couldn’t lift my left arm high enough to aim at longer distance targets. I have the lightest possible bow setup but even that hasn't helped. It's been years since I shot anywhere other than down the garden and even that is a real struggle. It is so difficult and painful to get into a decent shooting position. I feel as if I'm tying myself in knots yet it still feels wrong. Most sessions are little more than physiotherapy, I'm too stiff on both sides to shoot properly. I shoot a few ends, trying to loosen things up, fighting the pain. It's difficult to explain. I guess the best analogy I can come up with is that my arms feel like pieces of wood, totally inflexible and impossible to do anything with. I do still shoot, albeit irregularly, and do my best. Some days I do quite well but compared to what I could do it's a load of rubbish really. Despite the intense feelings of frustration and sheer irritation that I can't get my body to do what I want it to, I do still enjoy archery when I can and won't let CRPS take it away from me completely.

Last but not least, the latest addition to ‘what I do’. I've been toying with the idea of learning to play a woodwind instrument for a long time. I didn't know if it was feasible because of my situation or whether I'd even be able to get a note out. Earlier this year I got in touch with a music teacher who was recommended to me. He had clearly thought about my situation as he suggested a Clarineo, which is a C clarinet made of plastic. Smaller and considerably lighter than 'normal' clarinets I could hold it easily in my chair with my legs up. Plus I could get a sound out of it. Perfect! Actually the Clarineo was quickly replaced by a 'proper' C clarinet. It’s still smaller and lighter than it’s big brothers so it’s ideal for me. Turns out I'm not bad and making speedy progress. Bearing in mind I gave up music at the end of 2nd year at school I'm gobsmacked that I'm doing so well. Paul is absolutely fantastic, his enthusiasm and knowledge have opened my eyes to a whole new world and frankly I can't get enough of it. Inspired, I’ve thrown myself into it, practicing twice a day and I’d  do more if my body would let me. It takes a big toll on me like anything else. Pacing is vital, for example, only reading for a short time during the day, recording live speedway meetings on Sunday instead of watching two on the trot as I used to. I used to carry on playing my video game a little after Eric and the dogs came back from their walk but I can’t now. Even so, as the day goes on I feel rougher and rougher and have to nap at some point in the afternoon before my second clarinet session. I simply wouldn’t be up to it otherwise. Over the course of a week I feel more and more shattered and eventually can’t do anything except the clarinet. If you enjoy doing something as much as I enjoy the challenge and sheer pleasure of bringing a load of notes on a piece of sheet music to life, you do whatever’s necessary. Just as well I’m a stubborn so and so eh? 
My condition does cause me problems as it seems to with everything. My posture isn’t perfect, my arms are too low so the clarinet isn’t at the best angle. I’m trying to lift and keep them higher using bean bags under my arms, but I’m struggling with pain in my right arm and shoulder especially. I can’t use my diaphragm properly either because of how I sit to play. Regardless I’m coping so far with whatever Paul throws at me so happy days. To be honest I can’t imagine a day which doesn’t involve my clarinet. Long may that continue.  

Wow, now I remember why I haven’t written a blog post since last year. It takes oodles of sessions and is exhausting! So, what is the point I’m trying to make in this post? Well, the main thing is that no matter how bad your condition is, how decimating it’s effect on your body and quality of life, there will be something out there that you can have a go at and get pleasure from. You just have to find it, and it may be something you’d never have even thought of before you became disabled. You can improve your quality of life. It doesn’t matter what hurdles stand in your way there will be a hobby you can  take up that is fulfilling and enriching. Not just things to pass the time. No. I mean activities that are an ongoing challenge. Yes it can be incredibly frustrating when your body or condition (for me, CRPS) seems to do everything it can to stop you doing an activity at all or at the least make it really difficult. But you have to keep trying. If something becomes untenable, like going to speedway did find another way of doing it. Or try something new, like me taking up the clarinet. Having a chronic and debilitating condition absolutely sucks but finding ways to enjoy life is the ultimate way of sticking two fingers up at it.

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