The night shift
PS Mark are you nocturnal?
Since I'm sure there are plenty of people out there wondering about that question, I'll say a little about it...
I've always been very much an "owl" rather than a "lark". But over the years since I fell ill, and especially recently, I have indeed been taking that to a whole new level...
When I fell ill, probably my biggest problem was the reactivity (itching) I got when I tried to sleep. It still is really but I have it under a degree of control now. There are two main factors: firstly I was sweating a lot during the night and whatever I touched in terms of bedding seemed to "go bad" and then make me itch. Secondly I was itching at a low level all day anyway but when trying to sleep, one stays very still and relaxes of course, and the interruption to relaxation from these tingling, heat, itching and stabbing pain sensations becomes more noticeable and disruptive, preventing me from sleeping.
For the first few years, while I was still working regular hours, I didn't even realise any of this. My body was constantly "numbed" and I was so permanently shattered and exhausted that when my head hit the pillow, I fell asleep immediately anyway despite the itching - but slept for 10-14 hours every night and woke up feeling absolutely shattered. When I gradually begain to get some of these issues under control, and when I started to have a few good days, it became more noticeable that I simply couldn't sleep until I was utterly exhausted.
For years, I would lie in bed for hours, and hours, and hours, night after night, trying to sleep - changing bedding, moving to different positions, trying anything to stop the itching; it's painful now to even recall because it really was a living hell. I went through several beds and scores of sets of bedding of all kinds, and some were helpful, for a time, but nothing lasted for more than a day or two.
My body clock and daily routine became so disrupted that the main solution I developed for coping was simply to not even try to sleep at night. I was losing so many hours of life that I was really struggling with the basics of life, like cleaning and feeding myself. So rather than spend hours trying to fall asleep when I just couldn't, even though I was very tired I would stay awake for 24-48 hours at a stretch, doing something
at least, until I was so utterly exhausted that I could fall asleep despite the itching. In this way I tended to try to reset my waking hours: if I wasn't asleep by, say, 3am, after going to bed around midnight, I would give it up and get up and do stuff, and try to stay awake the next day so that the next night I would be able to sleep about 10pm and get back into a 'normal' routine.
Fast forwarding a few years now, to a point where I have more control over all the itching, I nevertheless have frequent inexplicable relapses, and maybe one night in 10 it all happens again and once it does, my whole life is thrown into chaos again. The practicalities of my life now are that I have a very understanding employer and boss, who allow me to work almost entirely from home (which is possible because my work is very techy, in software development), and in practice I work whatever hours I happen to be awake.
So nowadays my life is rather like the aboriginal sleep pattern I once read about: in research into what constitutes "natural" and "healthy" sleep patterns, there is one view (rarely expressed) that an aboriginal pattern based on 4 to 6-hour "shifts" guarding the camp has a reasonable claim to be natural. That is how my life tends to work anyway, without the "shiftwork": when I am tired, I sleep, when I am awake, I work. I sleep on the sofa, in the one room that's both my office, living room, kitchen and bedroom, and when I wake up, I move the mouse to wake up the computers and get back to work; when I'm tired, I sleep.
Over the years, with great effort, the practicalities of my life are now pretty efficient. Since another adaptation I've made over the years is to rarely leave my "oasis" or "safe haven" because of all the chemical sensitivities and other problems for me in the outside world, it's actually now possible for me to be very productive. Literally almost every waking hour is spent here working on the computers, and the only real break is to get some food. I do now go out once or twice a week for a few hours, but basically, here on my own on Sofa is my whole life. I barely have to move 10 paces to do anything I need to do.
And then along came Phoenix Rising...and when I started writing, I found I had an outlet at last where I could talk about some of the emotional and practical problems I faced, and rather than a wall of scepticism and disbelief, people actually said "yeah, me too" about all kinds of things. And in particular, the different time zones around the world and my strong desire to communicate with certain individuals from the US in particular, has ended up meaning that even though I don't really have such a bad problem with my hours as I used to, I am at the moment losng contact again with "normal" working hours and tending to work and chat through the night a lot. Basically because, after my whole experience of the last 15 years, I can - I'm used to living this way, and I'm really enjoying it.
I know, I know, sleep regulation is critical and bad sleep patterns can be fundamental and have major health impacts. You don't need to tell me! The point, though, is that I don't have a choice in the matter! At a certain point there comes a time when you can deal with a situation better by "bending like a straw in the wind" and going with the flow of what's happening. In the absence of any ideas to solve the underlying problems (although I have made some degree of progress over the years with some help) the only real solution I've had has been to adapt my life around the realities.
Finally having taken this opportunity to go into all this (in a terribly off-topic fashion, sorry!), I should quickly say how all this relates to ME/CFS. I've said once or twice that severe sleep deprivation over a prolonged time can be enough on its own to get a person close to the borderline of Fukuda criteria CFS, and I've often had an angry reaction to that assertion. But I stand by it because I know from my own experience that it's true. I have had memory impairment so severe that I couldn't remember my own phone number after having the same number for 10 years, complete imability to concentrate; I've had physical exhaustion so bad that I fell over in the street; swaying when closing my eyes (forget the name of that test); orthostatic intolerance; muscle pain and weakness, stabbing pains and rheumatoid-like pains, all of them being worse when I become sleep-deprived for a few weeks; and of course I have the underlying immune weaknesses that create the whole inability to get refreshing sleep in the first place.
I therefore suspect there are a lot of people who are at the very least labelled CFS who have similar or identical underlying phenomena causing them, and I expect that most of them never get past the stage of finding a safe haven - they just get into bed, fall asleep, sleep for 12 hours and feel trashed afterwards - just as I did for years and years before I began to unpick the pattern - and it took me a couple of years of detox etc before I could even perceive these effects.
So finally, while I call my illness "WTF" and would not tend to identify myself as ME (which I tend to think ought to be reserved for CCC), nor even necessarily as CFS (MCS is my only "diagnosis"), I could at the very least easily get diagnosed this way, and so whatever I do have, there will be people in an environment like this forum with the same problem. And there are: I have met several members whose symptoms seem exactly
like my own. It's also very noticeable to me that all the people I've met who make claims of "recovery" have basically got there the same ways as me, and all of us would agree I think that we haven't really "recovered", we have just retreated to safe havens and oases and radically transformed our lifestyles to a point where it's almost possible to forget that we are sick, and live a bizarre life inside a bubble of weird coping strategies. I don't know, but most of us seem to be single - I would guess that might be a fundamental requirement for all this to even be possible...
So to sum up: not exactly nocturnal, my sleep patterns are pretty close to random really, but I am certainly very often up all night! :Retro smile:
Phew, that was a long one....fancy a bit of a nap now...:Retro smile: