This is my third blog post for ME/CFS Awareness Day (12th May). You can find the others here and here. I come to this point again mindful of those who have severe M.E., who suffer long and hard and are not heard. They are on the most difficult path, unable to do the very simple things that even we, the moderately afflicted, perhaps take for granted.
I have been conducting an experiment - going for regular swimming sessions in a private pool that is in of one of those country club spa places attached to a hotel. It is beautifully situated in well-kept grounds where deer wander and even the squirrels look elegant. It is expensive. It is worth it - in a careful and restricted life, the movement is exhilarating. It is risky. My delinquent immune system, bashing about in the body that holds it, doesn't know what is going on. Most weeks there comes a point where I fear a terrible relapse, but this has not happened and I carry on. At one level I am getting stronger. I hate to bring IKEA into this (or anything, really) but as some will be aware, I've needed to spend time there recently. It is a measure of my new strength that I can keep going for much longer without needing to collapse onto one of their sofas or beds (easily done btw, you could get a decent half-hour rest and no-one would give a damn). I can usually swim (gentle breast stroke) for fifteen minutes now without much of a break. I can walk along flat terrain for longer and go faster, though anything with an incline is still difficult unless I have just had my strong late morning coffee. The swimming is also best done at this time. For the record, I go three times a week - I need a day in between sessions to rest, and I never do weekends.
Most of the time I feel ill in the usual way - muscle pains always kick in at some point and fatigue is intense. The feeling of electricity in the body, which I have described before, and has been a feature of my illness from the outset, has become much less frequent - and when it comes it seems more willing and able to move on and out. Bouts of insomnia are as per, if anything a little worse, meaning that most days I am jet-lagged. Reading has also suffered, I haven't been able to do much. With the writing (always, oddly, easier than reading), it's difficult to say; recently it has been clobbered by IKEA-related matters and the world, in the form of soft and hard furnishings, bathroom tiles, kitchen floors and tap fittings, being too much with me. In the getting of these, my powers have been substantially compromised. It's nearly done, the shopping, and then we'll see.
Do I recommend the swimming? Of course not. Everyone knows about the dangers of over-exertion with M.E., and I am no exception. I am against Graded Exercises as dished out by the medical profession. Had I attempted this at another time the results could have been disastrous. What I do recommend, though, is careful listening to one's body, one's whole being. An activity that might be quite inappropriate at one point may become possible and to some extent beneficial at another. We may have M.E. but we are still a work in progress, constantly changing and even though it sometimes feels dangerous to hope for too much, it is good to be open to new possibilities. Good also to honour changes in oneself, the moving from one way of being to another, we are not set in stone. I am vegetarian now and this also has come about because I paid attention to inner promptings. There was a time when I needed and liked eating meat but now I don't and would rather not have it.
I love Mary Oliver's reference to "the soft animal of your body" in her poem Wild Geese. I feel more alive to the soft animal of my body, and have compassion, do not judge it so harshly for having failed to live as it was supposed to. I was never robust, there were reasons for this. But also, perhaps, it was the luck of the draw, like having teeth that always needed fillings (my sister never needed any). The soft animal of me has endured. There is a black cat that has been creeping around this past year, sleeping on the roof of the bicycle shed, skulking by the bins, on the window sill and in a corner of the patio. I did not encourage it - the Signs cat has never demonstrated any wish for cat friends and is easily ruffled by their presence. I used to hiss and clap my hands, and it would scarper. Then I and a neighbour noticed how sad and neglected it looked, how even in the terrible winter it was outside. There is a cottage down the road where an elderly man got ill and died and we think the cat might have been his. Certainly it understood when I changed and made soft, friendly noises. We are giving it food now and then, the neighbour and I, and its fur has taken on a small shine. When we meet outside I say hello and half close my eyes - a cat's way of smiling. It understands me and smiles back. I feel grateful, as though it has given me a reprieve. I am sorry that I was unfriendly. There is no need for explanations, the cat is an accomplished sign-reader and does not hold grudges. It lives exquisitely in the moment, a wounded creature (a slight limp) and mangy on one leg, its animal heart intact. It remembers how to wash behind the ears and sometimes it rolls in the dusty road, eyes closed with the pleasure. When the rain is hard and cold it shelters under cars. The soft animal of me feels connected. We need to live the life that's in us, by hook or by crook. It would be a bad outcome indeed if we stopped responding to signals from animal creatures that ask only to be allowed to live their lives.
And what of those people I mentioned at the beginning, those severely affected by M.E.? Who is responding and listening to them? Even those who care nothing for them at all should sit up and pay attention - this can happen to anyone, including you or someone you love. Research has begun to happen, but not enough, and this country needs to wake up to it. I am hugely grateful to all those who have worked to help bring about changes, especially those who themselves have the illness and have given everything to the effort.
There is a March for M.E. scheduled in London, on the same day as the International ME/CFS Conference. All being well, I hope to be there.