helen-louise (baratron) wrote,

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I can tell it's 5am - there's so little external sound that the noise of the computer fans in this room seem deafening, and I feel as though restarting the CD will be loud enough to wake the entire street.

I am awake because I am resetting my bodyclock. Long-term readers of this journal will know that my bodyclock is broken at the best of times. I have delayed sleep phase syndrome, which is basically like permanent jetlag.

DSPS is a strange disorder in that it only exists because of modern society. Now, don't get me wrong - it's a very real condition. It's easy for someone with a normal bodyclock to discount sufferers as lazy people, who have insufficient willpower to get up on time. But it's more than that. If I was simply lazy, you'd have thought that forcing myself out of bed at 7am for a few days in a row would magically restore my ability to fall asleep at 11pm. In fact, what happens if I try is that I end up needing two alarm clocks to wake me up, stagger out of bed blearily at 8am, spend the entire day brain-dead and unable to think clearly, but at 10pm wake up and have loads of energy until 3am, when I have to try to fall asleep knowing that I have to be up again in 4 hours. It doesn't work. I need more than 4 hours sleep a night to stay sane.

I have several issues with sleep. It takes me a ridiculous amount of time to fall asleep unmedicated (2-4 hours), even assuming I go to bed tired and relaxed. Virtually no medications help - I've tried just about every herb, aromatherapy oil and drug with a name beginning with Z on the market. I once got given zolpidem I think it was, 10mg per night. When it entirely failed to help, I looked up the maximum safe dose online, found it was 40mg, took 4 of the buggers - and was still utterly wide awake 5 hours later. Right now I take mirtazapine, an antidepressant. No idea if it works for depression, but it at least reliably makes me sleep - an hour after I take it. I also have a lightbox alarm clock, that subjects me to BRIGHT LIGHT for half an hour every morning. Caffeine isn't the problem, because I've always avoided it - I'm very allergic to caffeine in drinks. Melatonin doesn't work for me because I'm allergic to caffeine - I've developed my own little biofeedback loop from years of having to stay up way past my bedtime to do coursework without caffeine. Yep, utterly fubar, that's me :)

On top of all of this, it is actually difficult for me to maintain any sleep schedule, even one of my choosing, for more than a week at a time. Having plotted my urges over a comparatively long period, it's pretty clear that I don't have 24 hour circadian rhythms. Mine are longer, and in the space of a typical week, the time I start to feel tired can drift by up to 4 hours. Yep, it's complicated.

Anyway, why I say DSPS only exists because of society is that the only reason why it is a problem that I can't get up in the morning and can't sleep until very late at night is that most jobs expect you to work from 9am-5pm. So why not change that? After many years of struggling with it, how I manage it now is to apply the social model of disability. Seriously!

Quick 2 minute explanation of the 2 different models of disability: The medical model of disability says "You're broken because you can't get up in the morning. Let's see how we can change you so you can". This is the model that most people are familiar with, that you are disabled because of your medical diagnosis. The social model of disability says "The world is broken because it expects you to be awake in the morning. Let's see how we can change the world so you don't have to be". It's a different emphasis - rather than being disabled by my "problem", I am disabled by society's expectations. And it's a lot easier to fix society's expectations than to fix me. Thus, I am now self-employed, and work in the afternoons & evenings, hours that suit my body, and can go to bed when I'm tired and get up when I'm not tired. Hooray.

Having been ill for a while and sleeping all over the place, 18 hours some days, my sleep patterns have stabilised. At falling asleep at 8am and waking up at 6pm. This is non-ideal for the purposes of getting just about anything done. So I need to drag myself back round to falling asleep at 2am and waking up at 10am. Because I have DSPS, most of the usual techniques for doing this don't work. The only one that does is chronotherapy, where rather than trying to pull back, you deliberately advance the sleep phase.

So, today I cannot fall asleep until 12 noon. I can then sleep until about midnight (it's sensible for me to allow myself 12 hours, as I have to compensate for staying up longer - yes, I have learnt this through repeated chronotherapy adjustments). I will be awake from midnight until 4pm on Thursday, sleep from 4pm on Thursday until about 4am on Friday, awake from 4am until 8pm on Friday, asleep from 8pm on Friday until about 8am on Saturday, and then I will attempt to maintain getting up in the morning. It won't last, because it never does, but I should be able to stick with 10am starts for a while.

Ergh. People with functioning bodyclocks don't know how lucky they are. I'm so jealous.
Tags: sleep disorders

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