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.
