Wednesday, March 31, 2010

in the swim (2)

So I have been doing the swimming for the best part of a month and need to decide whether to sign on the dotted line and become a Member of the exclusive little place. The swimming, while I'm actually doing it, is bliss and I am getting better at it, stronger, feel as though I am flying, in slow motion, bird on the wing of blue water. Chlorinated blue water, but still, it is the element and I am in it.

M.E. god is displeased. I hear him rumble and growl, a great wailing and gnashing of teeth, like Grendel and his mother both, howling for blood. That word again. But it is as though something is moving in the blood and a battle is being played out, David and Goliath, Daniel and the Lion. David and Daniel had the Lord on their side and won. The question is, will the Lord be on my side in the Battle of the Swimming Pool or will I be left gasping and bed-ridden with everything worse and the blinds all pointing south. Bravery in the face of M.E. god is never rewarded, we all know everything there is to know about this.

But the inner prompting is firm and insistent and says, do this; or, as my old grandma used to say: "Be heppy! Things can only get vorse!" Meaning that whatever you do things are going to go pear-shaped, so do the thing (that makes you happy) anyway. Well, she didn't mean exactly that, she meant shut up and be grateful for small mercies, especially the bean and potato soup I just made. But a little poetic license is appropriate, I feel, in the translation.

The thing is, I feel ill, my muscles flare and hurt, and some days I think oh gawd (sorry Lord), this is the beginning of something dreadful, back to how it was at the beginning. But muscle pain and feeling ill, c'est normale, and a couple of days and a few drugs later inner prompting says, get out and do it again while the coast is clear, be quick about it, make yourself stronger while no-one's looking. So I do. And it is all I can do. The writing is fast and furious, squeezed into tiny pockets. And inner prompting says, sometimes there is a door, and sometimes you can choose to go through it. Do not be afraid.
Why not? I ask.
Because fear is the devil.
Will I survive?
I don't know.
Why now?
Because now.

Friday, March 26, 2010

Kyrie Elaison

I will be singing Haydn's Nelson Mass tomorrow (alto line) - kicking off with Kyrie at approximately 7.30. So if you'd like to sing along:

Also singing Karl Jenkins' Stabat Mater, which youtube doesn't seem to have. So here is Adiemus - one we did earlier. No excuse at all for you not to sing along to this. Yes, I know, but sing it all the same. Is niiiice - even if it does go on a bit. (Try and ignore the adverts, unless you're actually looking for 'cheap chat' and debt management plans etc.)

Tuesday, March 23, 2010


Swam again yesterday. Stronger this time, and had coffee after rather than before. The aqua aerobic peeps had been in the pool before me "building up a burn" (as I overheard someone in the changing rooms say to her friend: "can you believe you'd be sweating in the water?") And I fancied that all the cavortings would have left some substance in the pool that might be helpful to me. I didn't even bother to be sensible this time, I pushed out length after length - a ten minute stretch followed by a couple of minutes in the jacuzzi heating up the muscles, then another few lengths. Blast and damn, if I'm going to go down I'll do it this way. In the afternoon I went walking on the forest, took in a couple of steep slopes - this would fix me for sure. It didn't. Stayed up to watch A Serious Man, the last of the four dvds we rented (special deal from Blockbusters) and was blown away by Jefferson Airplane's Somebody to Love first heard at The Roundhouse, which I had all but forgotten about, the quality of Grace Slick's voice exactly capturing the mood, the vein I am in at the moment.

No perceivable ill effects today other than a blinding headache, which I can cope with and for which I have pills, both pink and white, damn and blast. And intend to go to choir practice. If that doesn't kill me then I'll be back to tell the tale (I know, I know, I'm so rockanroll I blow myself away sometimes).

It goes against everything one knows with respect to the Condition, but I have this impulse to keep moving at all costs, and this notion that a moving target is harder to shoot down.

Sensible post to follow shortly. Probably.

Saturday, March 20, 2010

The experiment goes on. Swimming. Life. The signs are not auspicious. One was obviously prepared for this. But I am not prepared for this: a longing to keep moving through water, to feel and see my limbs afresh, be alive to the flow of energy that waits like some ardent lover, all the years notwithstanding, to be with me again and take possession. These stolen moments, I pay for them, the exercise makes me worse, the hot spots in my limbs and torso are livid, I step up the painkillers, wake in the night to a whooshing sound, the blood sounding in my ears. Lately I have dreamed of vampires, they offer me blood rather than taking it from me, it is thick and glutinous, I turn my head away.

I wonder if it is possible to have M.E. for twenty three years and not allow oneself to grieve. It is possible because one lives for a long time with the idea that it will get better, and then one lives for a long time saying that one has come to terms, found a path, a way to float above the situation, to wing it, of pretending (even to oneself) that the hours, months, years of looking at light filtering through wooden slats don't matter, because life is there, waiting for you still, and all manner of things will be well.

Sometimes you catch sight of it, the other life, the one that moves invisibly alongside, hiding behind corners and slipping away the moment you turn your head, but keeping close to you. Sometimes you bump right into it, apologise and move on, as though you had nothing at all to do with each other. Regret beyond compare.

Thursday, March 18, 2010

use and beauty

Excellent news that Non-Working Monkey is now to be properly non-working again, as she was when I first came across her lovely blog. She then got a proper job and although she argued persuasively that non-workingness was really a state of mind, I was never convinced. To be truly non-working you need time to bumble about and get into the zen of it. It seems to me that seriously doing the non-working is as much of an activity as any job worth doing and some people have a talent for it. I don't think I do, but perhaps there is still time to learn.

I've been thinking about the idle life versus the useful one (Zhoen's post was timely), and have decided that mine is neither one nor the other but now is probably the least useful I have ever been. It isn't that my life is not fully occupied - the stuff of daily life takes all the strength I have - but it's not the same as when I was working or looking after my children. The activities of my daily life don't make much of a scratch on the world one way or another. I don't know if I mind about this or not.

I am wearing the purples again. If nothing else, one can strive to be decorative.

Saturday, March 13, 2010

in the swim

It's an experiment that might fall flat on its face or lay me flat, but so far so (tentatively) good. I swam four times last week, no ill effects and possibly some good ones. Muscle pains/fatigue are there, no worse than usual though, painkillers as per, when needed. I am being very careful indeed, bringing movement in, listening to what happens. I begin by swimming a little. The muscles become resistant and painful very quickly, but I have made an interesting, and possibly significant (for me), discovery. If I spend time sitting in the jacuzzi, which is very warm (and I only like it gentle, no energetic frothing), I can then go back and swim some more and the muscles feel lightened, cleared of the resistance. After the second swim I go back into warmth under the shower. The activity is about all I can substantially manage in the day, and I so there is constant danger of overdoing.

It occurs to me that I might be doing a version of the dreaded Graded Exercises. But what I am doing is particular to me at this moment in time, comes out of my own inner promptings rather than a prescription. It is not a "method" I would urge or advise for another PWME and I can only do it because I am relatively free of other commitments. And it's risky. I'll keep you informed.

Life goes on apace, though, it really does, it is still horribly cold but we are going into spring and sometimes I feel moved to ask everything to slow down - the seasons, the passage of time, how seeds fall, take root, things come to fruition - because I can't keep up. Like the poor frog prince who chased after the princess once he had restored her golden ball, and she cheated him by running off. Come back, he said, I can't run as fast as you. Come back with my life, your promise to me, turn me into what I was before this - a properly functioning human being. Well perhaps not like the frog prince, but this is extempore, on the hoof, it's a blog post dammit, and I am soon off to the Smoke, not even dressed yet, but there was something else I wanted to bang on about, because of a recent conversation with a friend:

Other People - doncha hate 'em? You know what I'm talking about: Les Autres. Of course I don't mean Us, dear reader, how could I? We are we, and Les Autres are the Others. You know, the ones that get in the way and bug us, lay their infernal acting-out-of-unconscious-unresolved-issues trips on us, or are just annoying and get in the way. How dare they. The bloke who fixes my car, for example, does the service, MOT etc. He suffers from a chronic anger condition which means that whatever the situation, anyone who deals with him is going to be given the 'you are a really bad person' message. I took the car to him the other day because it doesn't seem to be accelerating as it should. He took this as a complaint about his services, me saying that he hadn't done his job properly at the last service. Didn't matter what I said, the blood rushed to his face (it always does), he pressed his lips together, became defensive, looked mutant. When are you going to learn, says Mr. Signs, that trying to appease someone with anger issues never works because they want a reason to be angry and you're just spoiling it for them.

And then there are the annoying OPs, the ones that gather in gaggling groups (in nice, quiet swimming pools, for example, when I said I was the only riff raff I was wrong) and talk - shout - about their sex lives, depilatory creams, who ratted on who, they are like OPs who talk loudly into mobile phones on trains, no idea that anyone else might be around having their psychic space violated. And don't get me started on OPs who come storming into the scene with expectations and demands, those with a sense of entitlement who feel that the world (and you in particular) should make up for something or other in their lives that has nothing to do with you - no. Well that will do, for the moment. Said my piece. But watch this space.

I'm off to stay with my lovely daughter and her boyfriend, looking forward to the vegetarian meal she is cooking for me, tomorrow being mother's day.

Saturday, March 6, 2010

full makeup

Oh good, the full makeup look is back, says Hilary Mantel (Friday Guardian)*, and now we can go back to doing what we did until "a flat-footed and scowling version of feminism" came and spoiled it by making us feel like whores. I say 'us.' For I personally was never particularly big on the makeup, apart from when I was trying to cover teenage spots with Max Factor pan stick, and the feminists I got to know were into heavy-duty eyeliner and mascara - I came late to it (feminism) on account of being flat-footed and a late developer. No good trying to do the full makeup now, I can't focus without my titanium varifocals and obviously if I have them on I couldn't be applying the shadow, mascara and what have you - though transformation can apparently also be brought about by wearing the right kind of foundation cream:

There are few failures so bleak that they cannot be brightened by Touche Eclat or Dior Skinflash.

I have nothing against the idea of trying to reinvent oneself, I do it a lot, sometimes several times a week. This doesn't mean to say that I am frivolous, it's just giving myself the best chance of something actually sticking - and look, I really have given up smoking, and I am still (I know it's only been ten days or so) a vegetarian. I commit to writing projects that are sabotaged by immune-system-on-the-warpath but although the big picture fails, things get written and it all counts - for me, at any rate, because that is what I do, will always be doing, one way or another. At the moment it seems to be another. But I am open to the possibility of change for the better - new strategies. If I were in Colditz or some high security jail I suppose I would be one of those who is constantly scratching away at some new escape route. Just to be clear, I am not speaking of "cure," as things stand this seems highly unlikely. Just possibilities.

So I have got myself a month's temporary membership to a private swimming pool - a kind of spa place attached to a posh hotel, where the pool is empty, quiet and warm, there are towels, lotions and everything needful so you don't need to bring anything except a swimsuit. Swimming in public baths doesn't work for me, I get cold, exhausted and have to mix with the riff raff. At private pool, I am the only riff raff. I have been swimming twice this week. Sheer bliss while I was in the pool - the strange freedom given to the limbs, moving through water with ease, as though there were no impediment. It's a dangerous undertaking, of course. Anything remotely aerobic can get the sickness moving around the body like a swarm of wasps, so I have to be careful, and the muscles, the base of the skull, the usual hot spots, feel bruised. But I woke one morning with a voice in my head telling me to begin swimming, just as I woke one morning last year with a voice telling me to "eat light-filled foods" (it wasn't entirely clear to me what this was but the poetry of it pleased me and I assume I'm on the right path with becoming veggie). There is a chance that I am going bonkers (if the voice begins to tell me that I am the new messiah you will be the first to know), but for the moment I feel as though I don't have much to lose by following these inner promptings. If I don't actually feel any worse, then that will be a progress of sorts.

If it all goes pear-shaped I can just get myself some Touche Eclat.

* blogger isn't letting me put a link at the moment