Saturday, 21 July 2012

When the wheels come off

It's the early hours of the morning as I write this. Given up on trying to sleep, my mind is too busy, too full of stuff that is normally well hidden and under control. What has stirred these thoughts up? A conversation on Twitter, no different to any other, but nonetheless it brought my world crashing down around me. Thoughts that haven't entered my head for so long are buzzing around like crazy and seem so hard to push away at the moment. 

I haven't cried like I did a couple of nights ago for so long. My positive outlook, coupled with stubbornness and the flat refusal to to let CRPS beat me has remained absolutely resolute for so long. Ok, we all have days when we feel down, usually a stiff talking to myself gets me out of it and back on an even keel. This was different and I'm still trying to fight my way through it. Perhaps writing this will help?
This is as far as I got. Wasn't able to write anything else. Now, many days later I am going to try and put it into words, for myself as much as anything else.

I suppose it's not surprising really, the last few months have been particularly bad, even by my standards. I'd got myself all ready to have a good discussion with my pain consultant, had made lots of notes, researched a couple of possible additions or substitutions that may help me manage my pain a little better. The meds haven't been helping as much for a long time, although I've kidded myself for months that they were. My GP is constantly frustrating and downright unhelpful. He doesn't want to prescribe anything else, which on one level is fine. He is out of his depth, doesn't know what to do with me, but is to arrogant to say so. It would be easier to deal with if he just admitted that. Instead he is just dismissive, doesn't even listen. Wait to see what your Consultant says. He also constantly witters on about reducing the number of medications I take. I have given up trying to explain that every drug does something, it isn't just about pain relief. it doesn't matter that the Consultant is very happy with the collection I have, still he goes on constantly.

To learn that I couldn't see my Consultant, when I was desperate to try and find some relief was utterly devastating. The huge wait for the new apointment seemed so far away. Even though it was brought forward somehow that didn't help. How am I going to cope till then? Other events have conspired against me, not least the disaster that was trying to get out of my broken chair. I am still trying to improve the limited mobility I have in my knees and all that time stuck in my time obviously did far more damage mentally than I would have thought. 

I had no inkling that I was about to fall apart. I was, I thought, coping with all that life was throwing at me. As I have done for so long. This on top of the nightmare that is my life anyway. I wouldn't want anybody to live as I have to. Well it isn't really living is it? When you get down to the bare ones, all I really do is exist. Struggling from one day to the next, with some excitement every now and again. Going to speedway being the main one of course, but then that comes at a terrible price. Indeed doing anything and everything, even things that seem completely unrelated to my legs bring with them yet more pain and exhaustion. I can't hug my husband being confined to my chair 24/7, can't snuggle up in bed. Sex life? No chance! I spend my entire life looking at the wall in front of me or out of the window. Can't see much other than the two huge Leylandia trees and the window and roof of the house across the road. Life goes on out there, but I am neither part of nor party to it. 99% of the time the only person I physically talk to is Eric. Apart from that I am alone with my own thoughts, too much time to be honest.

My life has become enriched by the wonderful friends I have made on Twitter. It is great to know that there is always someone who will happily chat about anything, I just have to tweet something and someone will reply. With Twitter has come contact with others who have CRPS or other chronic conditions. It is in my nature to help and support people (I was a teacher don't forget), so lots of my time has been spent supporting others, giving advice if I can. It's ironic that it should be the thing that has so enriched my life, that has ultimately brought me so low. I am used to seeing people talk about treatments they've tried, or will have. Appointments they're going to, drugs they're taking and so on. Nothing unusal. Perhaps I had been giving too much of myself, leaving me vulnerable. Won't ever know. 

I suddenly seemed to be fixated on the fact that others were being prescribed medications that I thought I should be getting. Why were they being prescribed to them and not to me? It wasn't fair! My need was greater than theirs! I had no chance of getting hold of anything anytime soon. And anyway I would be told that there is nothing else they can do for me. As they have done for years. How come others had options when I had none? It's so hard trying to put the feelings into words. I didn't care about anything else other than my perceived injustice. What was the point of fighting? The downward spiral had begun and before I knew where I was I was so down on myself. I sat just staring into space, no interest in anything. No interest in food, no interest in doing anything, I was going through the motions. Got no joy from anything, even little Kai's antics couldn't raise my mood. Eric couldn't reach me, had no answers. I couldn't face Twitter, had nothing to say, couldn't deal with the banter etc.

My gloomy thoughts turned to the way that Eric and I get no support from anywhere (OT, Social Services, GP etc). CRPS by it's nature takes all control away from you, you never know how good or bad the pain will be from day to day. Whether you will manage anything or simply have to sit in the chair and fester. For someone who liked to have control it is an ongoing nightmare. We have been left to just muddle through, there is no support, no way of getting help quickly. I went to A&E once when things were really bad, but they couldn't give me anything or do anything. They waited until the pain reduced sufficiently that I was no longer tachycardic and sent me home. Never gone back, no point. It's no wonder I was feeling so low, all those thoughts, worries and concerns were surfacing, being dwelt on and emphasised. No matter how hard I tried I couldn't kick myself out of it. I didn't have the strength, the energy or to be frank, the inclination. 

The turning point happened last night and makes no sense at all. Perhaps these things aren't meant to. It was speedway and I frankly didn't care whether I went or not. Now that really isn't me!! I was going through the motions as with everything last week. The weather was on and off, but we went. Absolutely threw it down all the way there. Now normally turning back would not even have been muted. Saw a photo of the pits which looked really wet on Twitter. Made the decision and told Eric to turn round and go home. It wasn't until I was home and sitting in my chair that I realised the change in my mood. For the better! 

Crazy really because it flies in the face of my 'line in the sand' stance on going to speedway. I guess I had grabbed some control of the situation. Control being the thing I have so little of. Who knows? All I know is that I woke feeling better today than I have all week. Not back to normal by any means but heading in the right direction. Going to be focusing on me for a while and trying to do things that are positive like going in the garden this morning. One thing is for sure, I'm fighting again!!

1 comment:

  1. Hi Jane! I understand the frustration that comes with CRPS. Everyday is a struggle not only for the sufferer but for the family as well. You really have to learn to cope, accept your limitations and be happy with what you can do. It's not always that easy but that's what you have to do.


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