Tired Boy

A quick summation of the past six months, since I last managed to post. After reaching a point in September where I felt reliably well enough to consider approaching a return to work again, and did contact the local job centre to put this in motion, I suffered a severe relapse at the beginning of November (see previous post).

It has only been in the past month or so that I’ve started to recover from this. This process has been slow, and I’m still only at a percentage of the strength and energy I had before the relapse. In fact, I planned to go into town to try and get my hair cut today, but my legs are very shaky, so I don’t think I’m going to make it. It was the first relapse of that length and severity I had had for several years, and it was useful to analyse my experience of it and to compare it with earlier episodes. Although, of course, I didn’t enjoy it – the experience is awful moment-by-moment, when you feel constantly overwhelmed by sensory data and pains in your body, and can neither stay fully conscious nor sleep properly – and it was extremely frustrating to be so set back after I had been improving so well and so steadily, I didn’t get as despondent about it as I had previously. I put this down partly to what I have learned over the past few years about the cyclical nature of this illness – so that, even though it was very hard to see where an end to this relapse would come from, I could more effectively convince myself that it was a question of when rather than if. The other part I put down to the change in my physical circumstances – particularly where I now live. The days – weeks, months – during which I was stuck in my home were less oppressive because I was actually happy to be in the place I was in: not stuck in a flat with a grey view and constant intrusive ambient noise, but in a quiet home in which whatever light was around flooded in, there were always pleasant views out of the windows, front and back, and the main ambient noise was warbling bird song. In addition, if I felt up to walking a few steps, I could get out of either my front or back door to get some fresh air and be in a pleasant, green environment. I have come to realise how important this has been to me since I moved here.

Creativity has of course been curtailed to a great extent during this period, but it has amazed me how I am sometimes able to write when I cannot even begin to do something usually considered much simpler, eg understand and deal with a straightforward utility bill. It just shows how different areas of the brain are differently affected by CFS.

My sister and mother have been great supports when I have needed it, and being nearer to both of them has been valuable in that way as well as from the social contact with family members. My lover has also been a wonderful support: very understanding, encouraging me to rest and to be active in about the right proportions, even when my perspective on how much I can do has been skewed; also showing no signs of minding that I am unable to do much – sometimes, even to converse – when we are together; and even not minding doing more of her share of chores – shopping, cooking, cleaning, etc – when we’ve been together.

That relationship has really taken me by surprise. What I saw as no more than a bit of uncomplicated fun has blossomed into an incredibly important relationship to me, and one which has had its own positive effect on my health as well as being good for ego and soul. A real soul mate, to use the cliché. She’s been such easy company, and has really never added to my stress levels even when I’ve been feeling at my worst – when I generally find it hard to be around people for more than short lengths of time, and tend to be more irritable. We’ve not even managed to have an argument yet, and last month we celebrated a year since we started seeing each other. Even better, she’s now moved to the south coast and is only two and a half hours away, rather than six or more as previously. Last weekend I had my first trip away from home since I relapsed, to see her in her new flat. The journey was so much easier than it used to be, and it was a great boost to my confidence that I managed it without incident or setback. We had to postpone a few things I had planned to do – eg to take her out to dinner on her birthday – because I’ve still not got that much energy, but I got there, had a lovely time, and got back without any serious problems.

During the spring I also attended a CFS treatment group at a local hospital, and I’ll write about that next time.

Still in the midst of a major relapse. I think I'm on the upslope now, and will have much to say about the past few months when I'm feeling a little stronger.

Have continued to be in pretty poor health, since the beginning of November, so haven't been up to posting more blog entries. Will come back to it when things improve somewhat.

Hope this finds you well.

Haven't posted for six months, because I've been busy and have also been so well, on the whole, that CFS and this blog have been far from my mind. Which has been great. Have spent a lot of time over the past six months with my lover, which has been just wonderful and quite a change for me.

I'll aim to come back to this blog more regularly now, and muse on some of the issues and questions CFS brings, some of which I’ve raised before.

I haven't posted for a while as I've been pretty busy with various things and have, on the whole, been in pretty good health. Once my focus isn't so much on other things, I'll start posting again.

Hope this finds you all well.

The past few weeks have been extraordinary. I have been more active than for several years, and I have also been travelling more than I have done for a long time. The main reason for this is that I have taken a lover, which has been just wonderful. Always a good boost to a flagging spirit, but we have developed a real rapport as well, and it’s been really good to have someone I can talk to about just about anything. It’s the first time I’ve been in a sexual relationship for 3 years, and I have found difficulty maintaining erection and orgasm, but I’m working with my GP to see if we can discover what the cause of that is. It does seem to link closely with my sleep – when I am rested and relaxed things are much better than when I’ve not been sleeping and am therefore tense. Symptoms of CFS seem to relate to this too: when my system is in the state I described previously as ‘physiological anxiety’ it is difficult to become physiologically aroused. Anyway, this is all fascinating stuff, but I don’t want to frighten my more sensitive readers, so I’ll leave it there.

Off up north again tomorrow for ten days, should be utterly blissful.

Apologies for absence – I’ve had internet problems again. Have just managed to sort them out.

More than that, though, I’m keen to identify and deal with the underlying cause, whatever that might be. Does anyone have any experience of this – anxiety without cause/object – and any ideas what I might do to be able to rest and sleep again?

An online conversation with someone else who has CFS yesterday sparked this thought.

Does anyone else have a similar experience when it comes to bugs and CFS?

I'm still having serious sleep problems - the one thing I've really not had any success in dealing with. I’ve tried a few melatonin capsules over the past few days, given to me by a friend who swears by them, and have got two good nights, but the others have been lamentable. Will have to go to the docs to talk it through again; I’d like to find a solution which doesn’t require me to take any more pills.

Just off to the docs now, in fact; I’ve been asked to take a new round of tests in preparation for a referral to the local CFS service here.

Even though my sleep hasn’t been much cop recently and I’m therefore pretty tired, but even so, I’ve been able to do quite a lot of writing over the past week. It’s been wonderful to be able to create, and a good feeling to be productive as well. Although it’s been cold, with the sun out it’s been warm enough to sit out in my courtyard, which is a wonderful atmosphere in which to think and write, and also something I so badly missed when I was in London – my own bit of outdoor space to which I can go even when I’m not feeling that strong. I feel really lucky to have it.

I also managed to get to a friend’s stag do in London, and was pleased with the way I handled it – went to the first couple of stages and then came home before things got too late (and boozy). Had a lot of fun, and my friend was delighted that I was able to make it, so it worked out well.