One thing that self-help media for the chronically ill tells us over and over again is to focus on and celebrate what we can do and to accept our limitations. It’s not terrible advice, but there are times when the fact that, with tremendous effort and planning, I can spend twenty minutes on a creative activity once or twice a day just ISN’T ENOUGH. I want MORE. Much MUCH more!
No matter how hard I try I really don’t find that much pleasure in taking tiny steps – I enjoy big strides, fast progress and being able to lose myself for hours in what I’m doing. I want to gobble up experiences, learn masses of things, see everything possible, run rather than walk, practise skills enough to get really good at them…
It’s said that it takes 10,000 hours practise to master a skill. My brain isn’t up to doing the sums today, but at a rate of twenty minutes per day, five days a week it’s going to take a fuck sight longer to get good at something or to produce a work of art than if you can spend seven hours a day on it. Doing things for the sake of doing them has its merits, but doing things well is even more fun.
I hugely admire (and rather envy) people who can stick to a daily practise, however small, and take pride in their achievements. But in truth, after a week or two of yet another attempt to do short daily creative activity it begins to do my head in that I can’t do more. Or, more usually, I get enthused and optimistic, spending longer and longer on my creative endeavour. Then the rest of my life starts to fall apart…
My bad, I suppose, but it’s not easy to fundamentally alter one’s temperament simply because one has no energy to spare. Doing what you love is just as energy-consuming as doing the necessities of life. It’s a fundamental difference between ME/CFS and depression that while doing something active often alleviates the fatigue that depressives feel, it exacerbates the symptoms of people with ME.
I get depressed by the effect ME/CFS has on my life, but the best cure I know for depression (DO something, anything!) makes the ME/CFS even worse. And that is very depressing. A friend said recently that depressives don’t hate life though they may sound as if they do, rather we LOVE life, but don’t have the means to experience it to the full and that makes us sad.
Yes, I’m grateful for what I’ve got, but I do want some more. Please.
*Oliver Twist, by Charles Dickens