I've been mulling over what should be the topic of my next post and I've plumped for the quest for success, or more importantly it's importance to the CRPS sufferer. I'll try and share strategies that we use to try to make sure life is about positives rather than dwelling on the negatives. I hope it helps my fellow sufferers and gives others further insight into this terrible disease.
CRPS takes no prisoners as I've said before. I've been writing this since 6.30am, largely because I'm hoping it will take my mind off the horrendous way I'm feeling and the terrible pain in my legs. I woke up feeling like I'd been hit by a bus. The reason? I dared to go out to lunch with Eric for the first time in ages. So I'm sitting here in agony. My legs are on fire, I have stabbing pains all over the place, my cheeks are red hot (cheers morphine!), I'm overheating badly and my head feels like it's surrounded by a fog that is pressing in on me. It would be terribly easy to feel really down and depressed, wishing I hadn't bothered going out. I desperately try not to and that's a philosophy that stands me in good stead.
As far as it is possible I do my best to take the positive from any situation or anything I do. Not dwelling on what I can't do, which would inevitably leave me feeling down, useless and thinking 'what's the point'. In the early days those thoughts were never far away, and certainly contributed to me considering suicide on a daily basis. I'd be lying if I said I don't still feel totally fed up, desolate, low and resentful on occasions because I either can't do something or am really struggling to cope with the payback. Being unable to do anything is so incredibly frustrating. You have to do things to try and take your mind off the pain, so if you can't? Well it's a viscious circle.
The other really important factor to me staying positive is that I don't set any long term or even short term goals anymore. It's pointless because I never know what I'll feel like from day to day, let alone in a couple of weeks/months time. Sponteneity is not a word applicable to the CRPS sufferer. We make appointments, such as the dentist. However these often get cancelled on the day because I'm simply not up to it. We don't worry if we are a bit late for appointments either, we go at our own pace and get there when we get there. Rushing causes more pain and makes me snappy and irritable. People are fine with it because they know the situation. Similarly as far as possible I don't have a deadline for anything, or at least give myself a lot of time to get something done. It seems ridiculous that it can take me a couple of weeks to order something on the Internet. But it's amazing how I simply don't feel up to getting the tablet out. These blog posts take so much out of me, it takes several days to write just one, but again every one published is a success. It is so hard to do anything whilst suffering chronic pain, so why make it worse by doing too much! For the record it has taken four sessions to get this post done. Hope it was worth it!
Another thing I do is keep a diary. At the end of each day I briefly write what Ive done, and more importantly my achievements for that day. We're not talking mind-blowing stuff here, or things which normal people would thing twice about doing. Things such as having a bath, managing to read a newspaper all the way through, ordering something on the Internet, spending time on Twitter. Here are some typical entries....
26/10/2011 - Played Deus Ex (video game, I always play whilst Eric walks the dogs). Feeling really grotty, spent all day sleeping, trying to get well enough for Jackie's visit. Had to get through feeling grim, Managed to get talking in the end, Really good to see her.
23/10/2011 - Played Killzone 3. Played tennis (I do this sitting in my chair using a Playstation Move controller which I swing as if hitting the ball). Felt dreadful later in the day. Read paper today. Slept lots of the afternoon. Read my book.
22/9/2011 - Played Deus Ex. Went to Lakeside (shopping centre). Really enjoying it although legs not good at all. Bought Sony Tablet. Slept all afternoon.Read part of paper. Read my book.
23/9/2011 - Played Deus Ex. Felt absolutely terrible today. Couldn't do much, tried to rest. Read paper. Managed bit of setting up new tablet. Read my book.
Riveting stuff isn't it? I put 22 & 23 September entries in as they show how doing something like going out knocks me sideways. Typically the length of time spent reading is about half an hour before I can't carry on, similarly the newspaper takes a couple of sessions. Sometimes I read the same sentence several times, falling asleep again before I can get any further. I play the video game for about an hour and a half. However each time I manage to do any of these things it's an achievement, something to be positive about. It is also good to read through my diary when I'm feeling low, reminding myself of what I have managed to achieve.
I try not to think how utterly pathetic my daily efforts are compared to what I used to do. With CRPS you have to celebrate the little things because they are all blows made in what is the constant battle against the pain, exhaustion and everything else that is part and parcel of having CRPS.