Monday 27 October 2008

To sleep, perchance to dream...


"These are a growing army of the walking wounded, the vertically ill who are too sick to function adequately but are commonly not sick enough to become 'horizontally ill', actually bed bound, although this is all too often an outcome in severe examples".

Leon Chaitow, N.D, D.O


In the six months between falling ill and being diagnosed, I was really lurching around in the dark, trying to work out what was wrong with me and how best to deal with it. I knew that this was not just a case of "coming down with the flu"; I'd had all the symptoms for months, but it never actually manifested into flu! Not even a head cold.

A typical day started the night before, because the quality of my sleep determined the exact type of waking life that I was to experience in the following twelve or so hours. I knew, that without making certain preparations before retiring to bed, then the following day was guaranteed to be a horrid round of painkillers, not having the strenghth to eat a meal (eventhough I was ravenous), keeping all physical movements to a minimum: to avoid using up energy that was in short supply - avoiding going back upstairs once I was down; it was a staggering effort - and deciding whether I could get away without washing my hair (it had been two weeks), which would set off a train of thought......I could lie down in the bath I suppose, just one shampoo, but, would I be able to massage it in? Not really, I just can't muster the strength - it's making my brain tired just thinking about it -slowly, is better then nothing, oh, but ma is out at work tomorrow and what if I can't get myself back up? I can't lie there for four hours. Well if the worst comes to the worst, I could....no don't be daft, I'll leave hair washing for now...perhaps Wednesday....And so it goes on.

My goal was to try and improve my quality of life, which would then give me, hopefully, enough strength to try and sort out how to treat the illness, but, I dreaded going to bed. I no longer watched TV of a evening, it was a festival of pain for my eyes and ears, it scrambled my brain and left my nerve-endings jangled. So, I would sit in bed after dinner and try to read a book. My body had gone to pot, but I was determined not to lose my mind along with it. However, what had once been a pleasurable pastime was now an instrument of torture as far as my brain cells were concerned, albeit, an occasionally comedy form of torture (at other times I really felt like I was fighting off the start of dementia). If I managed to visibly untangle the mess of words on the page, re-read the blind spots, reverse the sentences that had been processed backwards and go back to that word that looked like 'bugger' , but on closer inspection and after much concentration actually said 'began', well I could make myself so tired that the urge to sleep would envelop my brain and I would snuggle down with a sense of optimism at the depth of sleep that the night might bring.

Then it would start, a sound, a sensation like a metal blade being dragged across a blackboard (the wipeboard generation will not understand this reference, they have missed out!), then the realization that this grotesque feeling was actually taking place inside my head, inside my brain. Then the sound changed to one of a train, as it hurtles into a station, doesn't stop and then changes pitch, as it hurtles out the other side. Next, there were the little popping explosions, like a chinese firecracker under one's shoe, "pop", then another and another...ooh, that was like a firework, exploding into a shimmering cascade of little stars...ooh, no, that one was more like cannon fire, on a dark, smoky battlefield. I realized, that out of fear, I was holding my breath and clutching the duvet cover, tight, over my legs, waiting. "This is it", I thought, "my brain is exploding, bit by bit. Am I dying? What a funny way to go!", I mused to myself. This was as bad as it got, but it did become a routine nightly experience, alongside the insomnia, the painkillers every three hours,the palpitations and breathing problems. But no actual sleep. No actual, deeply satisfying, refreshing, full-on complete re-energizing, dream-scattered sleep. In fact, no dreams of any kind. I didn't notice this at first, but, being someone who has always remembered vivid dreams and always had enjoyable visits to my own private dreamscape, the absence of them was suddenly significant. By 5.30 am, I would be so exhausted through just having had hours of deep, but constantly interrupted dozing - pain episodes and gasping for breath, convinced that I'd stopped breathing - that I would finally drop off, into somewhere between dozing and sleep; a sort of fibromyalgic induced limbo, and then come round at 9am, feeling like death; but seriously needing to pee. Urinating demanded a special technique. My 'pee' mechanisms couldnot function properly - as fibromyalgia gradually starts to shut down the various bodily functions and runs others on reduced power - it was a case of squeezing out at intervals. There was no irrepressible torrent, my pelvic muscles were on strike till further notice. It was a start, stop, start, stop approach. If I managed to completely empty my bladder, it was somewhat of an achievement and signified a better than average start to the day.
 

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