Finding sufficient energy – even when time allows – has become something of an energy-zapping struggle in its own right thanks to the wonders of MS (as in, I wonder what it will do to me next). And by ‘sufficient’, I mean anything more than the calories needed to breathe.
At least I can sit here this morning and thank the MS stars that I don’t have to come up with any more, ever-more, silly excuses as to why I’m not out there with the rest of the London Marathon runners. It does, however, provide plenty of time to wonder just why people would don costumes to run in when surely even running vests and shorts are already unnecessary burdens…
Anyway, like the Marathon runners and plodders, I’m finding that much of life is reduced to a series of step-by-step, little-by-little, processes – and I’m getting used to canning my frustration at such things (much to the relief of my pocket and the swear jar). My latest ‘project’ is a case in point.
The move to downstairs living is complete insofar as my only trips (apposite word) up the stairs are for the shower, but, while a happy enough move, it has left me with a burning need to redecorate my new surroundings. I have drilled all the necessary holes – slowly – in order to get shelves put up, but now I am about to set out my meagre collection of ‘things’ upon them, I find that I ‘need’ to re-paint the walls and so forth.
At the second attempt (don’t ask) I have the right silky paint and an array of willing brushes (the latest ones shedding bristles a lot slower than I am shedding head hair, fortunately), and the wall redecorating is progressing as planned – albeit slowly.
Today, once I’ve finished prevaricating… I mean, building energy reserves… I will be applying the final broad coats to the eager walls and by this evening I will be able to return all of my beloved ‘saved’ books to their rightful positions. Along with Death on Binky and my ravens, of course.
I may even have time to drill more holes, this time for my very nicely framed maps of the Discworld and Ankh-Morpork and my (completed and framed) jigsaw of the Witches in flight.
Just how much I manage in the end will be firmly dictated by the aforementioned energy reserves though, and today will be a lesson to self in how best to manage such things. Sitting here with my coffee, tapping away at this keyboard, I feel as fit as a flea – but I know that said flea is likely to collapse with a tired buzz at the slightest provocation. Searching out the necessary energy reserves has become, as Milton Jones said of drug-fueled farmers, like looking for a needle in….
We shall see,
Tomorrow, somewhat unusually for a Monday, holds an odd sort of promise though since I shall be traveling to London for the first dose of my new guinea pig fodder. In desperation of the sort that only MS sufferers (and maybe a few others) can perceive of, I am searching for anything that might alleviate – or halt the worsening of – some of the worst symptoms of the condition. I have volunteered to take part in a new study into a range of medications that might prove to offer answers, if not results, and my chances of getting some of the new ‘hard stuff’ as opposed to the control sugar group are three in four. Not that I will know either way.
Add to that the fact that my personal variant of MS is progressive and I am not sure how any result will be measured and I think even Einstein might have struggled with that one – but I will try anything that offers the slimmest of chances of progress in medical knowledge.
Such understanding is slowly being gained – little-by-little – and I genuinely want to assist. If such assistance results in benefits – however slight – for myself, then that’s a happy bonus.
And that really is the condition in a nutshell – everything slows to a crawl. The knowledge, the treatments – and the sufferer.
I have the strongest feeling I will be crawling come nightfall.