Friday, March 28, 2008

A few comments on M.E.

It's come back again this afternoon, out of the blue. No apparent cause. No warning.
I'd been active in the morning, hacking and lifting some pretty heavy matted ivy off the yard, and carrying poles and posts around, and sawing a bit of firewood. But nothing excessive.
Soup and apples for lunch, as per usual.
Had a half hour sit, reading an old paper.
Went out to join Anne in sorting boxes of apples, as arranged. The apples have been over-wintering in the packhouse, and many of them have either begun to rot, or have been nibbled and destroyed by voles, or rats, or something. We wore latex gloves to protect against Weill's disease, carried by rat piss.
I carried a few tubs of damaged fruit to the compost heap, then suddenly felt weak and incapable. I recognised it as the M.E. paying a visit.
It's not like ordinary tiredness, or even ordinary exhaustion. I feel my energy just draining away, and I'm left in a sort of limbo. Not tired enough to sleep, but not awake enough to actually do anything. Physical work just seems impossible, especially if it requires attention or judgement. I'm likely to make mistakes and make silly decisions. I don't handle sharp tools at times like this.
If it's a bad bout, I can barely read. Well, I can read the words, but they don't make much sense. At the moment I'm reading a book called 'The Essence of the Gnostics'. It's not a particularly difficult book, but you need to be alert to cope with the ideas. No point in trying to read this now! I'd simply be wasting my time.
And I'm not alert enough to try the general knowledge crossword. I look at the clues and note that some of them I don't properly understand, although they're not in code or cryptic: just straightforward questions. Other clues I do understand, but I'm aware that although I know I know the answers, I also know that the answers will not be delivered up to me. My recall is on go-slow.
It's as if there's a sort of blind been half-drawn between my mind and me. Or should that be 'my Mind' and 'Me'? Yes, I think so. Or 'my brain' and 'Me'? Mmmm…
Nothing feels right. I have an overwhelming feeling that I ought to eat something that will make everything all right. From previous bouts I recognise that this is a snare. I find myself eating nuts or sweet things. Sometimes muesli. But nothing works. Sometimes a shot of scotch will do the trick, but it's not my favoured remedy, as I know it's only short-term, and if I have more than two shots I'll pay for it later by feeling extra drowsy in the evening or worse, waking up in the middle of the night, with a pounding heart and then be unable to get back to sleep for at least an hour. And quite often it only makes things worse, right from the start.
No.. nothing works. But all the time there is this powerful urge to seek out the magic mouthful that will bring energy and relief from the woozy fog within. It's very hard to resist. So I've just had two sticky bars. No.. they didn't help. Now I just feel stickied up and guilty too, as my weight has gone up again recently despite my previous triumph of losing three stone.
I wonder about picking up the 'Pickwick Papers', which I started last week… but I can't be bothered with it. This is no reflection upon the book, but upon the fact that I don't enjoy fiction much any more, not even now, when I can't read a 'proper book'.
This is another irritating effect of this sort of attack of 'M.E. Lite': a feeling of frustration that I can't be getting on with something worthwhile or meaningful.
So what to do?
Play my guitar? No.. don't be silly. You don't have the strength or focus (you know this from previous experience) and no inspiration will be forthcoming. You'll just scratch away at a few chords, but it will be unimaginative and unfulfilling: just more frustration.
Listen to a bit of music: 'Yes, but…'
'Yes but' is a very common reaction to all suggestions when the M.E. strikes. Nothing is quite right. Nothing will hit the spot. Not food. Not reading. Certainly not creativity.
Alright, let's try listening to some music.
My musical taste are pretty catholic, so I riffle through the CD's to find the right thing. Unsurprisingly, nothing seems to hit the right note. Lively or quiet? A sampler of African music picked up in Oxfam yesterday? No.. too… I dunno… too 'in yer face'. So what about the Schubert string quintet, also from Oxfam? OK… let's try it.
Yes, it's fine, but I feel myself being picky. Isn't that cello just a bit strident? And suddenly the whole piece seems to be merely trying for effect, whatever that means.

The good news is that this is just a mild bout, and I can be pretty sure that it will pass in a few days. It might even have gone by morning, as suddenly and mysteriously as it arrived.
If it were as severe as when I first 'caught' it, I'd be lying in bed feeling just completely bloody awful (a medical term). Curiously, though, I wouldn't be feeling frustrated, as I am at the moment, because I would know I was properly ill, and doing anything other than Lying in Bed Being Ill would not appear on the horizon.
The other good thing is that there is no pain, or any other symptom other than debilitation, associated with the sort of M.E. I get. I just need to ride it out, and smile.
So.. I smile, and ride it out.
It's a damn nuisance to Anne, of course. She's just come in after sorting all the rest of the apples herself. It took her a couple of hours. I could have saved her a lot of effort.
No.. no I couldn't. And that's that.

I wish I could pin down what brings these bouts on. Anne is very good at spotting trends and possible causes, but it's defeated even her over the past twenty-plus years. It comes. It hangs around. It goes.

I'm continuing this the following morning…because lo! The M.E. has retreated again. How? Why? No idea. But at the moment, 8.30 am, I'm feeling fine. A bit sleepy but not ME-ish. How do I know this? I cast my attention around my head, and can feel that the fog has shifted. I'm not positively thinking when I do this casting around; just sending a little shaft of focus around my brain. But somehow I can tell that it has turned up for work again.

Strangely, I sometimes have a feeling of gratitude associated with the M.E. For a start, all I get is exhausted. Some people have terrible headaches or joint pains, and heaven knows what else. This of course leads one to wonder what on earth 'M.E.' is, if it can present in so many different ways. Personally, I think it's just a name made up in desperation by the medics, as a great big blanket to throw over a raft of oddball issues they can't cope with. Thus, perhaps, you really can say that 'M.E' doesn't exist. The effects definitely do exist though, so perhaps what we need is a more careful analysis of the symptoms and a careful re-naming session or two.
Mainly, though, what we need is some sort of understanding of what brings it on.

This gratitude also shows up when I realise that I am currently much better that I have been for twenty years. These days I actually expect to be able to put in a half day's work, most days. I can mow the lawn, saw firewood, and help Anne to beat back the encroachments of Nature. This takes a bit of the work off her, and some of the responsibility, too. She has her own problems and needs all the help she can get. So I'm glad I can do a bit more.

I'm grateful too in an unexpected way. Before the M.E. arrived I was flogging away at all hours, growing top notch veg for an uncaring society, as represented by Tesco and Sainsbury, who paid rock bottom prices for top quality goods. We were pretty well trapped in this unwholesome relationship (I go into more detail of how this trap works in 'Scenes from a Smallholding'.) Was the illness a sort of breakdown brought on by overwork and stress? I think there may be some truth in this.
Anyway… once I'd got over the worst of the exhaustion, I began to read again, for the first time in many years. I remember deciding to read the hardest things I could, to keep my mind alive. This meant, to start with, Colin Wilson and Lyall Watson: books about anomalous events, and sheer weirdnesses, written by responsible writers. This led on to a decision to try to find out what Religion was all about, and why Science wouldn't speak to it. Any why, for heaven's sake, would Science not even talk to psychical researchers? That was ridiculous to my eyes.
So I did a lot of reading on science, religions, psychology, history, psychical research, philosophy, mythology, and anything else I thought might offer an insight.
And I'm very glad I did. I now feel more than a little wiser. In fact… I'm grateful to the M.E. for giving me the time to read and think.

Odd, eh?
And, of course, I'm grateful to the M.E. for making it possible to write my books. If I'd been growing veg all day every day, for peanuts, I could never have found the time to write anything.

It's a mysterious universe, don't you think? 'Grateful for being exhausted'!

I guess it's an example of clouds and silver linings.

Right. So. The M.E. has buggered off again, for which I'm truly thankful today. In fact, I'm grateful for it.
Now let's lift some more of that ivy, and saw a bit more firewood..

1 Comments:

Blogger Michelle said...

Hello

I found your blog whilst researching smallholdings and have so far only read your most recent post.

Just wanted to say, if I am exposed to rats, I experience the exact symptoms you describe. Other stuff triggers it too.

The NHS are useless. I go to an excellent hospital in London who treat many ME sufferes, many of whom say their problems started with exposure to agricultural chemicals (not sure if this is relevant to you?)

If you are interested I can give you their details

Glad you are feeling better

Michelle

3:25 pm  

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