It's now been over ten months since my last relapse; this has been the longest relapse I've had in the eight-and-a-half years since I first got CFS.
I'm still struggling with everyday tasks, and have little energy to spare for other activities. It's been a long time since I was able to get stuck into writing, and seeing friends, family and my lover has been curtailed to a greater or lesser degree. I'm often asked why this relapse happened, or what might make it better, and the simple answer is that I don't know. Sometimes there might be some stressful event which precipitates a relapse, but I can't see that anything obvious set me back this time. I was a lot more active last summer, but it doesn't feel as though I actually overdid it - it all felt managable. Likewise, it's never really clear what it is that sparks a recovery from a relapse: often I simply feel unaccountably better on one day and then improve after that. It can even be that 'overdoing it' on one particular day, which would usually leave me laid up, instead makes me feel a lot better. The trouble is that this is not a science and there's no way of knowing which day is the 'right' one to overdo it and therefore improve rather than dip further. It is still an awful lot better being ill in my current home in the country than it was in the city.
One thing I really do want to focus on is regular periods of rest and relaxation. This was stressed as the key to management of the disease, if not actual recovery, at the hospital course I attended earlier this year. I have at times noticed a difference after a short, focused rest and relaxation, and feel that it is important for me to build this into my daily routine. However I find it extremely difficult, especially - ironically - when I am more ill, to do this. I'm not sure how best to work on this, but I thought recently that finding a way to look differently at rests - as an activity to enable me to do more activity, a bit like taking an energy pill, rather than as something which gets in the way of me doing other things - would help. A form of CBT, which is something I've not used that much in a conscious way. I've not managed to change my way of thinking on this yet, though, and still find it difficult to take even one rest during the day.
One possible positive is that, when recently I injured my foot, the nurse who treated it at my GP practice has an interest in CFS and has done training in CBT. She was very keen to talk to me about managing my illness, and in the end we talked for over half an hour. I'm hoping that she'll be willing to see me occasionally to continue this, as it would be really good to have some ongoing support.
