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why Delayed Sleep Phase Disorder sucks, part n in a very long-running series - helen-louise
baratron
baratron
why Delayed Sleep Phase Disorder sucks, part n in a very long-running series
Dear gods, I am an idiot. I have spent at least the past month fighting with a combination of my chronic fatigue and sleep disorder, almost completely ineffectively. I've been trying to reset my body clock the "normal" way - or at least, the socially acceptable way. Getting up earlier and going to sleep earlier. That's what's supposed to work, if you have willpower and really want to get better - right? Yeah - just the same as how depression goes away by itself if you really want to get better...

The thing is, I - and everyone who's ever done research into it, know that this approach simply doesn't work for people with Delayed Sleep Phase Syndrome. If I could fall asleep earlier by sheer willpower alone, I'd have done it by now. It's not like I'm particularly happy about having been a raging insomniac for decades. If I could get out of bed when improperly rested, I would do it. Sometimes, I even manage it - for example, on Saturday, I got up at 9.25 am because I had a really good reason to. But getting up early doesn't make me fall asleep any earlier. I was physically and mentally shattered for pretty much the entirety of Saturday, but couldn't get to sleep before about 2 am, because that's how my brain works. And then the chronic fatigue set in, and I promptly slept until 6 pm on Sunday, and could not physically wake up or be woken up before that.

Other people's expectations get in the way. Delayed Sleep Phase Disorder is possibly one of the truest arguments for the Social Model of Disability. The more we learn about human biochemistry, the more obvious it is that DSPS is not actually a disorder in the medical sense. Individual people have so-called "chronotypes", which determine the time of day when their brains are most active. This makes sense from an evolutionary perspective: different members of a tribe had different jobs, and were required to be active at different times of day. For example, it would be useful to have some members who were able to sit up and watch out for predators or threats while everyone else was asleep. I've presumably inherited or acquired that particular set of genes. (Chronotypes may be soft-coded or epigenetic rather than hard-coded - this seems more likely because changes to preferred sleep-wake cycles are very common during puberty). Similarly, some members of the tribe would fall asleep earlier and wake up earlier than everyone else, to take over the watch in the early morning or start gathering fresh food for the day. Those are the extreme morning people. It is all perfectly normal biology. But the assumption that a 9-5 day suits everyone means that people who don't naturally wake up before noon are, at worst considered lazy, at best disabled by society.

Lately, though, my sleep pattern has got to a state where it's actively inconvenient. I am quite happy with waking up about noon and falling asleep about 3 or 4 am. That works very well for me, and I can maintain it basically until I get sick. (When I then sleep for 15 hours, and get messed up again). I am not happy with waking up at 5 pm and not getting to sleep until 9 am. Also, I need to be awake about 9 am this Saturday, and stay awake all day, as we're going to the Sonisphere festival. And I'd quite like to be in a vaguely getting-up-near the morning routine for BiCon at the end of August (which I finally booked and paid for). Blargh.

So what I'm doing now is the joyous, joyous thing known as chronotherapy, which is rotating one's sleep pattern by staying up later and getting up later. Like I said, it's the only thing that works. I've wasted a month trying to drag my sleep cycle backwards with willpower, tablets, and multiple alarm clocks, and have got nowhere. So why have I been resisting chronotherapy so hard?

Simple. It's extremely antisocial. I got up at 9 pm on Tuesday. I'll let myself go to bed at 1pm today. Then I'll get up again at midnight (oh gods), go to bed at 4 pm on Thursday, get up at 3 am on Friday, go to bed at, like, 7 pm on Friday, and hope I can get up by 9 am on Saturday. All of this being somewhat subject to change depending on how much extra crashing-out time I need. Really, I shouldn't be doing it this fast, but I don't have a lot of choice. Oddly, and somewhat usefully, with shifting your body clock forward, it doesn't matter if you're extra-tired and need to sleep for longer - as long as you can force yourself to stay awake for long enough. So I'll see Richard for all of 2 hours tonight (unless he happens to wake up early so I see him before he goes to work), not at all on Thursday (each of us will be asleep while the other one's awake), and probably not at all on Friday either unless he wakes up early. JOY JOY JOY. I think I'll go insane with that little human contact.

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Current Mood: frustrated frustrated

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Comments
ailbhe From: ailbhe Date: 28th July 2010 08:05 (UTC) (Link)
Oh gawd, that sounds miserable. Rob has a very picky sleeping pattern but it CAN be kept in line by getting up earlier so that he needs to go to bed earlier. Staying up later and later and going round the clock that way sounds MISERABLE.

(And the different sleep cycles thing? clearly illustrated by my two children, I hope we can keep them in a socially acceptable cycle so that they can be part of, um, everything. Society. Thing.)
quiet000001 From: quiet000001 Date: 28th July 2010 08:58 (UTC) (Link)
... That would explain so much. (I had 9:40am classes last term. This is not early. It just about KILLED me to go to them. 11:20 is the earliest I want to function.)

I mean, when I was living in the UK I thought maybe part of it was just that staying up meant I could talk to more people in the US. But now I'm in the US and I do not spend tons of time talking to people in, like, California, and yet I still stay up till strange hours and prefer sleeping all day. (As evidenced by the fact it is 5am.)

I also maintain my brain works better at night.
barakta From: barakta Date: 28th July 2010 08:59 (UTC) (Link)
As someone who doesn't really do 9-5 terribly well but not as struggley as you do I totally grok this.

I need at least one day a week if not two where I can sleep as late as my body will let me which can be anything between 10am and 2pm although usually stabilises at about midday. My most stable (least unstable) sleep pattern seems to be bed at about 2am, get up at 10am. Getting up at 8 for work 5 days a week which isn't terribly early is horrible - I don't boot till well into the afternoon sometimes. And then have brainwin at 5pm when I get kicked out of the building.

I'm hoping Dawn will let me stay doing 12-8pm on Mondays during term time even after I go 4 days a week (which is looking more possible) so I'd only have 3 days a week of early morning which would be superb! I also wonder if my health would continue to improve on top of "medicating the crap out of self alot" does.

Good luck with chronotherapy - that's how kimble prepared for the Dun Run overnight cycling madness this weekend just gone - although it did mean she was way too screwed to be coherent at 7:30am so I told her to go back to sleep instead of coming to hospital with me as she looked so dead.
barakta From: barakta Date: 28th July 2010 09:04 (UTC) (Link)
My truly optimal brain function time is about 10pm to 2am - although it runs the risk of me going *wheeee* and staying up all night and breaking my own otherwise manageable sleep patterns :)
baratron From: baratron Date: 28th July 2010 09:39 (UTC) (Link)
Yup :)

It seems to be common among geeks. I'm not sure what the cause and effect is.
barakta From: barakta Date: 28th July 2010 11:42 (UTC) (Link)
Heh yes. My dad does the 7am waking up thing despite naturally going to bed late buy getting up at 7am, drinking several pots of tea and reading the papers before going back to bed a while later to sleep a lot more.

Both my parents are fairly nocturnal. My mum is often awake after 11pm and we're both prone to doing the "oh shit it's 1am" on a worknight thing. Although she's developed morning skills which she never had when I was a child. As a child it was "don't poke the MONSTER which is mum before about 9am". My earliest memories are of boiled eggs with my dad before he went to work at 7am and NOT waking my mum up before she got up of her own accord. These days she often wakes early and is in work routinely by 8am although she cheats by doing breakfast at work.
From: (Anonymous) Date: 28th July 2010 11:25 (UTC) (Link)
I was diagnosed with DSPS about a year and a half ago. Luckily the Melatonin does the trick for me, although I do panic every time I hear the words "medication review" that they're going to take it away. (Here in the UK Melatonin is prescription only - if you don't have it prescribed by a doctor it's actually illegal to have any!). My hospital consultant is great though; if my GP stopped prescribing I'm sure he'd post me a script.

Anyway, the big problem I have is the social aspects. My manager is great in that I do an 11 to 7 shift, although our Personnel department reckoned that me taking a day off to sleep when I was trying to do 9 to 5 was unpaid leave because I wasn't "sick" (even though I'm on hospital-prescribed medication for it!!).

If I didn't take the Melatonin... well. I have quite a severe shift in that unmedicated I sleep from around 4-5 am until noon, or even later if I have a bad sleep debt. If they took my tablets away I'd ask to do a split shift. Sleep 5 am to noon, work from 1pm to 5pm, then home to spend at least a bit of time with my other half and having a social life... then back to work at midnight to 4 am. I work in a hospital so that's not inconceivable. I hope it doesn't come to that, though.

But yeah, I wanted to post to say good luck with the chronotherapy. I do similar if I absolutely must do something early morning like catch a flight. Basically I don't take the tablet, stay up all night. I've driven to collect people from airports and they say "what, you haven't slept?", to which I reply "Yes, but I'd only have been asleep a couple of hours anyway. Being awake at 7 am for me is like you being awake at 2 am. No biggie."

You are not alone!!
From: pir Date: 28th July 2010 12:09 (UTC) (Link)
I hear you on the sleep stuff. You do have to find the things that work for you, anti-social or otherwise... minus the CF I have similar issues to a lesser degree, though I don't know if it's DSPD.

The most rested I've ever been is when I was working on project stuff at University and could just go to sleep when I was tired enough and get up when I woke up. Ended up on a 6 day week.

Hope you manage to get around the clock with minimal ickiness.
From: x_mass Date: 28th July 2010 19:32 (UTC) (Link)
chronotherapy is the only that works for me
I'm currently on sort of chronotherapy but split into two hour sleep slots spread over hours

must get back to sleep as I had 4 hours and seeing inception at 11pm
From: x_mass Date: 28th July 2010 19:36 (UTC) (Link)
what do you play on xbox, either i or the_borderer could meet up with you and spend some shared virtual space
wateryfowl From: wateryfowl Date: 28th July 2010 21:37 (UTC) (Link)
You know, I might see about getting tested for this.

I find that, while I can maintain a normal schedule, it requires a lot of willpower and I am generally miserable with it.

I tend to be most mentally active very late at night to very early in the morning. (say 11pm to about 10AM, which is 11 hours). If humans are meant to sleep 8 hours a day (which I think humans slept more as tribes but that is sort of irrelevant) there's only 15 active hours to a day. So, I expect your body wants your mental activity to match your 16 hours of physical activity. Or at least, that's what I'm getting from all this.

Although, didn't we (sort-of) know for years that some people were "morning people" or "nighttime people"? I expect it's not exactly the same thing, of course, but it seems close...
From: artremis Date: 28th July 2010 23:07 (UTC) (Link)
i did realise you were going to the same Festival a oilrig - hope you both enjoy it a big lot :)
From: artremis Date: 28th July 2010 23:13 (UTC) (Link)
um didn't realise even - d'oh!
baratron From: baratron Date: 30th July 2010 11:42 (UTC) (Link)
I'm pretty sure we had a conversation about this, but it's okay to have forgotten :)

When do you want to see me for your birthday? I'm not sure when all your presents will arrive, as I've been having Annoyances with online ordering.
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