I was up with the birds again, to no good purpose at all. It just goes like this sometimes and is a feature of the M.E. rhythmless dance that a number of us have to keep step with. Sometimes it involves sleeping 12/16 hours, either continuous or staggered, at other times one is awake and wired after 3 hours, the brain speeding along impossible highways, trying in its own way to make up for lost time, and that way madness lies. Poor brain, I let it have its moment, in a few hours it will have run its course. I have just seen a fox streaking across the end of a neighbour’s garden. Sometimes, when I am awake early, I see the deer walk into our garden. I have seen them lift their heads to the cherry tree, looking for sweet fruit, but this year they won’t find it because the tree will be cut down.
I loved the snow and the cold but there is no doubt that this has been a hard winter. I notice that, apart from Brighton twice a week, I am going out even less than before and might almost venture to say that I am looking forward to the spring, just in case the wind turns and with it a measure of strength is given and the Symptoms die down a little. I would like to have a few (if not many) clear moments which, at time of writing, I have not had for many months, apart from a blip just after Christmas.
Well, but I have got a batch of poems into some kind of order and this feels like an achievement, even if nothing very much comes of it.
I have been reading, as one does, about other people with CFS/ME or similarly debilitating conditions. Often I come across the notion that one should not allow oneself to be defined by whatever it is one has. “I may have (whatever), but I refuse to be defined by it,” or words to that effect, is what people say, and of course I understand this and have said it myself. But. Speaking only for myself (for how can I speak for my fellow PWME, we have our own paths and modus operandi), I recognise that everything I undertake is in some way defined by M.E. The way I write, for example, in short, intense bursts or in pared-to-the-bone minimalist style, depending on what my energy is doing at the time and bearing in mind that when I actually do this the sand in the egg timer is, so to speak, running down. Blog posts, being more of a conversational thing, are something else again – I notice, though, that they are often in the region of 500 words, which seems to be as long as I am able to hold on to a particular thread. M.E. informs the style I bring to any activity and it does therefore, to some extent, define me. I think what people are afraid of doing is degenerating into nothing more than complaint and self-pity, but there is a difference between this and talking about what you do or opening one’s throat in order to sing (of the old, the new, the dark, the blue and the glory). We all have to sing, really, one way or another, with our real voices, in order to be properly alive.
I could probably say more but have gone over 500 words, the thread is wearing a little thin and I have to go to the dentist.