as small as a world and as large as alone

7:36am August 16, 2014

vaniccio:

i struggle between wanting to stay up late and wanting extra hours of sleep

Me too.

I also struggle between being unable to stay awake, and unable to fall asleep.

Even when I use meds to help, there’s this point where I can pull myself through the grogginess sometimes, and then after that, no amount of effort can make me sleep.

But then there’s other times, meds or not, where no amount of effort can make me stay awake.

Or where I go to sleep and wake up again in short bursts the entire night.

Of course without the meds my sleep pattern is “Irregular Sleep-Wake Pattern” for the most part.   (And before anyone tells me that’s only for people with severe neurological disorders:  I have severe neurological disorders, including several that are often implicated in ISWP.  So please don’t lecture me about things you know too little about.)  When I do get enough meds to sleep a little more regularly, I swing into a weird free-running non-24-hour pattern.  So IDK what’s up with my circadian rhythms or lack thereof.

ISWP is where you sleep in random naps of 2-4 hours throughout the entire day, and is most common in people with severe neurological disorders (which happen to include autism and Parkinson’s, among others, and I have autism with a parkinson-like movement disorder known to disrupt sleep, so… yeah).  Free-running sleep is where your circadian rhythm is different than 24 hours, and is most common in blind people, but does affect some sighted people.  So i either sleep in random catnaps (if unmedicated), or I sleep but not to a 24-hour cycle (if medicated or otherwise induced heavily to sleep).

One thing that is really important to understand about the circadian rhythm sleep disorders is that they are not set in stone.  I’ve gotten crap before like “You couldn’t have both ISWP and free-running sleep, those are two different disorders and if you had no circadian rhythm you couldn’t end up with a circadian rhythm different than 24 hours!”  But that’s not how it works.

I have a friend who has a non-24-hour sleep-wake cycle most of the time.  She’s autistic.  What happens is that her sleep schedule gradually shifts between non-24-hour and irregular sleep-wake pattern.  She didn’t know these had names, so she used to call irregular sleep-wake pattern “schedule collapse” because it was the point where all her efforts to hold her sleep together fell apart into a non-schedule full of random catnaps.  This shifting between the two happens to her without any meds or other tinkering with her circadian rhythms, she just naturally oscillates between the two extremes.  When she was first being diagnosed, she tried to find information on irregular sleep-wake pattern and thought she detected an annoyed tone in the researchers’ writing when they said that most people who had it were institutionalized for severe neurological conditions (including developmental disabilities such as autism) and therefore unavailable for them to study.

I’ve personally done searches on sleep and autism where the term “irregular sleep-wake pattern” is specifically used to denote a common sleep disorder among autistic people.  So “only people with severe neurological disabilities, you wouldn’t be here writing this if you had one” my ass.  Makes me wonder what they think a severe neurological disability is.  Do they think it makes you automatically incapable of writing?  I first started being called severely neurologically disabled back when I was still officially classified as gifted, surely if someone thought that writing precluded severe neurological disability they’d have said I either wasn’t severely neurologically disabled, wasn’t writing,or wasn’t gifted?  But they didn’t. They said I was gifted and I had a severe and complex neurodevelopmental disability and a lot of other things.  (Then I tested below gifted soon after that, and became #exgifted, and then it just became that I tested “in the superior range”.  But still tested well enough they never questioned my writing, even when they should have.)

So if you think you have Irregular Sleep-Wake Pattern, don’t let anyone tell you that you don’t have a severe enough neurological condition to have it.  Either you have it or you don’t have it.  And plenty of neurological conditions are tied to it, that still allow you to write on the Internet, to think clearly at least some of the time, etc.  People just have this weird idea that “severe neurological disorder” means “unable to do anything at all for yourself and probably insitutionalized” or even “probably in a coma”.  

Which is not what it means at all, and you can find, easily, papers on the topic of, or just mentioning, ISWP in people with a wide variety of neurological conditions that allow a person to think and write on the Internet.  I wouldn’t be surprised if some of those neurological conditions are among those currently classified as mental illness by accident of history.  (Since the entire category of “mental illness”, like “developmental disability”, is an accident of history, not a category that has more of its own internal validity like “neurological condition”.)  Certainly many developmental disabilities involve ISWP.

Anyway, that was a long tangent, and I actually fell asleep in the middle of writing it, go figure.  So I forgot where I was going with it and I’m going to post it now.

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