Tired Boy

Still very unwell, and in fact this week I’m feeling worse than I have done for a while. Feels viral again, although I’ve hardly been in contact with anyone so it’s unlikely to be a virus. Shaky, wobbly, hot-headed, faint, dizzy. Blah. I’m at a bit of a loss as to why I’m not improving. I felt a little better over the weekend, and was able to get outside and do a couple of useful jobs, eg clean the sink – for the first time in months – and thought I might be on the way up at last, but yesterday I felt truly dreadful and could hardly make it out of bed. I’m sure I didn’t overdo it over the weekend, so I don’t think how I’m feeling now is self-inflicted.

I am trying to focus on rest and relaxation, although I do find this very difficult to do, for two reasons: one, because it’s quite a measure of self-discipline to build it into the day and to remember to do it; and two, because when I feel this bad I tend to get by partly by distracting myself by doing other things – reading, watching TV, piddling around on the computer, and so on – and to stop and rest feels as though it is focusing on how I’m feeling and the situation I’m in, which is exactly what I want to avoid. However, in reality this doesn’t always happen, and a period of rest does usually help me find some energy and get through the day. At the moment I’m trying to think of rest periods as an activity which I can do to help me to be able to do other activities, rather than in a negative way, as something which I have to do because I feel so unwell. I’ve made a concerted effort again today, and have actually managed to do two periods of relaxation already today; I’m aiming for four.

As soon as I’m mobile enough I’m going to book to see my GP to talk this through. I’ll ask if the nurse there with the interest in CBT will be willing to see me occasionally.

This relapse has meant that I’ve hardly been able to see my lover in recent weeks. I’m not able to go to see her, and she has been tied up with family events over recent weekends and so has been unable to come here. This has been difficult at times because we’ve been used to spending a lot of time together, but we’re getting used to a different form of relationship. She has been very supportive all the way through this, and I hope she’ll be able to get here this coming weekend and that I’ll be well enough after that to visit her and take her out somewhere.

This late burst of warm sunny weather has been a boon – I was wishing for exactly this a few weeks ago. Not much sun gets into my garden these days, and I’ve not been well enough on some days to sit in it in any case, but on days when I have managed to get some sun onto my skin it has been blissful.

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.