The title of a Depeche Mode song and very appropriate for the CRPS sufferer. Previously I've talked about the idea of spoons representing the amount of energy we have. Everything we do uses up some spoons and if we try to do something 'big' (not by normal standards) then we completely run out of spoons and grind to a halt. Here I tackle something I am bad at, seriously bad. Pacing..
It seems pretty obvious that my focus should be on doing anything and everything to minimise the pain, swelling, exhaustion and everything else that goes with having CRPS. This is where pacing comes in. Commonsense says that you should always try and do something for a time or at an intensity that doesn't produce too large a backlash in terms of punishment. Easy you'd think?
Well for someone like me, who never did anything by halves before I got CRPS, it is all but impossible. I was never happy unless I'd flogged myself to death in the gym, swum more lengths in the pool than the last time, bettered my lowest score on the golf course, won every match I played in whichever sport I was competing. You get the idea. I have long accepted that all of these things are now impossible, but it hit me this week that I still haven't and am probably incapable of ever accepting the severe limitations the condition forces onto me on a daily basis. Let me try and explain..
It is now six and a half years since I got CRPS and I can honestly say I still have no idea where the safety limits are, just how much or how long I can do things for before I get payback. This is in large part because I can now do so little of anything, however trivial, before my condition flares. It is however more to do with the fact that if I actually did a 'safe' amount it really wouldn't be worth bothering at all. If I say that just getting dressed and out to the car leaves me feel horrendous, and that is before we go anywhere, you get the idea what I mean. Similarly having a bath. Getting upstairs, having the bath, being dried, getting back downstairs leaves me struggling badly with increased pain and swelling. Have a bath every day? Not a hope.
The bizarre thing is that it isn't just physical activity that makes me worse. I did absolutely nothing a couple of days ago except play a video game for a couple of hours, read a magazine, tweeted a bit. On waking from my afternoon nap I felt absolutely terrible, pain worse, feeling lousy in myself. My right foot also swelled alarmingly and was a severe purple colour. How could what I did make me so bad? It is truly ridiculous, you couldn't make it up! This sums up my life. Imagine if your life involved you doing so little each and every day, yet still you felt worse and were punished constantly. This is how I am forced to live every single day.
It perhaps seems more understandable why I kill mysef going to speedway. Since the season started it has been an uphill battle to recover from the effects of one meeting before the next one. The punishment has been brutal, long lasting and rendered me incapable of doing anything except sit and wait it out. Now that's fine because although it is something so extreme and madness to even attempt it, I do so because I love it and it is as I have said before 'my line in the sand', something I will continue to do despite what CRPS throws at me.
I have tried to pace myself loads of times but in all honesty it doesn't work for me. I love doing 'exercise' on my Nintendo Wii. Now in the past I would have played for an hour or more and then spent the next couple of days paying for it. Instead I recently decided to try again to find a sensible amount that I could do without it having an adverse effect. Turns out that I can only manage 15 minutes at the most. Hardly seems worth the effort. Similarly I tried to limit the time I spent in the garden but again this meant I got very little done. I combined this limited time doing something with lots of rest in the hope of finding a more bearable pain level etc. Very quickly I found myself feeling bored, fed up and more worryingly down. It was affecting my outlook on life, bringing me down. You'd have thought I would feel better in myself, not worse?
Turns out I simply can't cope with being sensible and pacing myself properly. I don't mind suffering increased pain, swelling and everything else, no matter how bad, if I feel that what I did was worth it. Doing so little yet still feeling grim isn't for me. The way forward, and it isn't for everyone, is to do more of something than I should, regardless of what I do. At the end of the day I have to look after the mental as well as physical side of me. If that means I have to suffer more then so be it.
Pacing? What pacing....