Up early again

I’m still getting used to the incredible idea of being up before other people are.  Yesterday I woke up, got onto the computer, looked at my to-do list, thought, “I must ring the council about that damaged pipe in the main stairwell,” and then realised that it was still only 8.45.  Right now I’ve been up for an hour, my partner is still having a lie-in, and I should give it another half-hour or so before ringing my mother.  I never even knew what time she woke up before.

You know how it is when you are newly and mutually in love with someone, and you exist in a state of delighted astonishment that it’s really happening?  I’ve been like that about being able to sleep at conventional hours, and sleep more deeply at that.  Now I’m starting to come out of the honeymoon period and look more seriously at my sleep and energy patterns.

My sleep pattern is mostly solid to the point of being occasionally inconvenient.  I disgraced myself by falling asleep in the middle of a TV episode last night at midnight, and there have been quite a few times recently when my partner’s wanted to stay up later than I can and we’ve not been able to spend that time together.  I’m getting up at the same time as him on workdays, but he tends to go to bed later (he’s allowed to have a social life, after all, and is generally a night owl) and then pay off his sleep debt by having a long lie-in on his days off.  Maybe we’ll be able to work around this better with practice.

What has been more of an issue recently is that instead of getting more energetic as the day goes on, to the point where I’m bouncing around at 11 pm, my energy peak seems to have moved to the morning and I’ve been sleepier than I’d like in the afternoons and evenings.  One problem is that this makes me terribly anti-social when my partner gets home from work, and the other is that I just don’t like being sleepy for that much of the day, and have a feeling that my overall energy levels are less than they were a few weeks ago.  I’ve been waking at 6.30 and then going back to sleep or dozing for the last three days, although yesterday I gave in and got up at 7.30; no idea why, or whether it’s just a temporary blip, but this is not where I’d like my energy to be, especially since I’ve been even more tired than usual later in the day.

Of course, the ME goes up and down all the time anyway, and it’s been a stressful week, so perhaps that is what’s causing this.  Ten days ago I decided to try a little experiment just before bed.  I’d had my orange specs on since 9, but just before midnight I tried taking them off and putting the twig lights on instead.  These are fairy lights on twigs in a vase by the other side of the bed, and as they’re rice lights rather than LED lights, it’s a soft, warm light which I didn’t think would have enough blue in it to keep me awake.  I was wrong.  I suspect that by now I’ve sensitised myself to light levels, which is great when I’m deliberately manipulating them but means that I have to be more careful about accidental changes.  I missed that sleep wave and the next one, and at four was lying in bed tossing and turning, in the way that used to be normal for me for years but now seems intolerable.  I woke up at the usual time a few hours later, and in the interests of not losing my hard-won sleep pattern, stayed awake.  Sleep deprivation always  makes me groggy and generally worse the next day, and in particular heightens pain.  Usually the pain is a stabbed-in-the-eye-sockets type headache, but for some reason it’s gone for my joints and in particular my hands.  The pain has mostly gone if I don’t overdo it, but it’s still causing enough trouble that I haven’t gone back to quilting yet, and this is a very long hangover from one bad night’s sleep.  Ah well, the mysteries of ME, who knows.

However, this has made me wonder exactly what’s going on with ME and my levels of melatonin/serotonin/other relevant hormones.  I never did find a sleep specialist who knew a thing about circadian rhythm disorders, so I’m going to ask my GP, who is not a specialist in sleep or ME but is generally wonderful, open-minded, and interested in how I’ve been fixing my sleep.  I’m currently going for 11 hours of darkness plus 1 hour of dawn simulation, which is a fairly substantial change from what my body was used to for all those years before.  Perhaps it’s more melatonin than is actually optimal for me?  The general idea behind darkness therapy is that we’re evolved to need 12 hours of darkness and 12 of light in the 24, but I suppose that’s for healthy people, not people whose entire systems are in a mess and behaving differently.

Alternatively, it could be that 12 hours of darkness is exactly what I need, it’s just that I’ll have to go through an adjustment period.  There’s a lesser-known treatment for ME called the Marshall Protocol in which light is almost entirely restricted for the first two years of treatment.  This is done along with other major changes such as high doses of antibiotics, so it doesn’t reflect my situation that closely, but I think it’s worth popping into a Marshall Protocol forum and asking them about this.

I wish I had a nice friendly specialist to consult who knew about all of this.  All I can recall from my reading at the moment is that sleep disorders are the norm in ME, to the point where it’s been proposed that ME is actually a type of sleep disorder, and that morning cortisol levels are low in women with ME, which is where I hope that the dawn simulation (which raises cortisol levels in the preferred way) will be useful.  From what’s happened so far, I am getting the feeling that light and darkness could affect my health quite profoundly, and I’d love to know the best way to utilise them.  I don’t even know how much sleep would be the ideal amount for me, for all I know it’s more than 8 hours.

Meanwhile, yesterday I tried a second lightbox stint at 3.30pm, and I think it did the trick.  I had the odd energy dip, but I wasn’t tempted to fall asleep until helplessly doing so at midnight.  I’ll keep this up for a few days, and if it doesn’t continue to be helpful, I’ll follow my partner’s suggestion of starting the darkness therapy later.  My gut feeling is that brighter daytime light is a better approach to this particular issue than shorter nighttime darkness.

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