helen-louise's journal

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.

I am sitting in front of the computer wearing yellow ski goggles that nitoda lent me. I look like the biggest dork on the planet, and I have to say that the colour is hurting my eyes slightly.

The idea behind this is to do with how my brain reacts to different frequencies of light, and using this to improve my sleep patterns. Apparently people with delayed sleep phase syndrome are often unusually sensitive to blue light (and UV). Computer monitors and TVs give out enough blue light that we can sit in front of them all night without getting sleepy (a thing I am only too familiar with). The solution to this is either a) don't use a computer or TV near bedtime (argh!), or b) use yellow lenses to block out the UV that prevents your brain from making adequate quantities of melatonin.

I've no idea whether it will work, but anything is worth a try.

Well, I'm home. Many thank yous to my lovely hosts, jinian & hattifattener and leback & Alexei. Also to their various cats: Dizzy, Bat & Squeak, and Jasmine, Mischa & Tofu, who did not meow all night and keep me awake, jump on me while I was fast asleep, or put all their weight unexpectedly on my bladder. In fact, I successfully shared a bed with Jasmine for an entire night, and only woke up sneezing because of the cold I already knew I had. It may be that I am no longer allergic to cats; either that, or my current allergy meds are good enough to deal with the allergy. Hooray! 

I currently feel absolutely rotten. While in the US I "accidentally" reduced my Efexor dosage from 112.5 mg to 75 mg per day without passing through 90 mg as intended (went straight from every 16 hours to every 24 hours; couldn't manage to remember every 20 hours). This was fine in Seattle which was having unusually summery weather, and especially in the Bay Area which was glorious (around 30 °C and incredibly sunny). Now I am back home, and it is grey, drizzly and disgusting - under 20 °C, and well and truly autumn. SAD is suddenly kicking my arse, bigtime. I wasn't expecting it this early, and I am completely unprepared.

Also, yes, I've had a cold. I'm pretty certain it isn't the PAX H1N1 because I really haven't been very ill at all by my standards. Didn't have a thermometer to check my temperature while I was away, but I knew I couldn't have much of a fever because I could still think. (My brain gives up entirely once my temperature reaches 37.7 °C or so.) However, I was spacing out badly enough in the airport in Friday that I refused the offer of a hotel room for the night, a business class seat on Saturday and $200 in compensation in exchange for allowing myself to be bumped off the flight, because I just wanted to get back to the land of civilised healthcare asap. Really didn't want to have to have the argument/fight with my travel insurance people about whether a chest infection following a cold would count as a "pre-existing" condition given that I have asthma and get secondary infections after every other cold.

I've had a night of bad breathing, so I'm going to pack myself off to the doctor first thing in the morning. Decided I wasn't ill enough for A&E, but I definitely need to get my lungs listened to. I'm 90% sure I have a chest infection, because my lungs feel full of goo and it's hard to breathe deeply. If I didn't have asthma meds, I'd have been a very unhappy bunny - have been taking double of everything for a week now. It's time for Moar Steroids (UGH).

And I have No Freaking Idea how to fix my jetlag. Normal people can get up early and/or go to bed early, and it fixes itself. With my sleep disorder, I could drag myself out of bed at 6 am, but I won't get tired any earlier. The only sure-fire way to fix it is to stay up later and later, and work round the clock *that* way, but... that's a method for last resort. 

Have now seen doctor. I was Sensible and Assertive and told the gatekeeper receptionist that it really was very urgent that I saw my doctor, because I was severely anxious and had been hanging on since last week and I wasn't sure how much longer I could go on coping by myself. As usual he was running extremely late but I sat in the waiting room with no brain and read the issue of OK that was all about the death of Jade Goody. Apparently Katie Holmes and Tom Cruise are having another baby. And it is scary when Jordan poses in her underwear with her children in the same shot.

Anyway, he decided that a lot of my problems would be fixed if only I could get enough sleep, so prescribed a short course of zopiclone, warning me that it was highly addictive etc etc. When I got home and looked it up I wasn't terribly convinced that it would work, being a "Z drug" - I still remember the time in my second year at university when I was so unable to sleep that I was randomly passing out all over the place, including in lectures and one time in lab (!!), and went to the useless doctor [1] there for some help. She prescribed zolpidem (Ambien), which did nothing - I was routinely still awake 5 hours after taking it, and I eventually looked up the maximum safe dose on the internet and took that, without success. 

Well, I took the zopiclone last night and to my extreme surprise it worked. I feel a bit fuzzy in the head and still a bit sleepy, but rested and a lot less anxious. No dreams about aeroplanes crashing, to take the example of the night before. Hopefully it will continue to work until the end of my exams, and after that I'll be in enough of a sleep pattern that I'll be able to keep going.

Also, I sent the following email to P, who teaches the biological chemistry course which features natural products and drugs: ( Read more... ) Seriously, I feel all clever now!

Why do I not have a userpic with me raising one eyebrow? I'll have to fix that sometime.

[1] a.k.a. the doctor who told me "If Prozac doesn't help then you're not chemically depressed".

Yesterday I was supposed to say happy birthday to stellarwind, who was "levelling up". Except I didn't get online all day. So here is an apology along with an actual post in my journal, to make it extra apologetic. (Normally I only post happy birthday in people's own journals, or on forums, or by email.)

In other news I am a little ball of fuzz and stress. Still very, very tired which is now coupled with not sleeping properly. Since Friday night I've been having what I can only term "very loud" dreams, so I wake up having dreamt so much that I don't feel rested. Ugh. They have not been entirely bad dreams, but some of the ones that weren't nightmares were so odd that I've felt disturbed by them nonetheless. Also, why do I keep having nightmares about cake?

I am completely disorganised with regard to Christmas (which, in turn, means that the "me + Richard" entity is completely disorganised, because it's my job to do holidays). Apart from the presents that I've bought through the year as I've seen something that would be perfect for someone, I have absolutely nothing. While college was happening I was too busy, and now it's so dark all the time... Christmas shopping & organisation does not combine well with SAD. Whose stupid idea was it to put Christmas in the middle of winter? Those Southern Hemisphere types have it the right way round. At least in the summer I'd have enough energy to deal with it. But then my birthday would be in midwinter instead, meaning it would be dark and cold and I wouldn't enjoy it. Bah. And yes, I suppose I could spend half the year in the Northern and half in the Southern Hemispheres (including at least a month in Iceland when it DOESN'T GET DARK), so I'd never have to deal with winter, but I don't have enough money to maintain multiple homes. Nor do I fancy moving to the Equator, which is the only actual "cure" for SAD - unless someone is planning on moving a civilised place like London, New York or Seattle to the Equator.

I have about 30 hours of coursework to do over the holiday (if I get it all done right first time - otherwise it'll take longer). Half of this is from one lecturer, the rest is from another four lecturers combined. I think lecturer #1 needs to learn what levels of work are appropriate. If everyone else is giving us one problem sheet, I don't see why she gets to give us three huge lab writeups (which she wants bound into a folder!) AND another two problem sheets. I am actually worried about getting it all done, because of aforementioned darkness and lack of energy. It's discrimination to make me do work at the time of year when my brain doesn't function - isn't it?

Last night I slept appallingly badly, and so am spending today wandering round like a zombie who hasn't had enough brains. For some reason, I had an excessively dry mouth all night, but nothing helped. It's amazing how unable to function one night of insomnia+interrupted sleep makes me, but this is possibly because I tend to run underslept at the best of times.

flippac is staying here because she has a conference in London. Not sure how much socialising with us she's going to do relative to socialising with conference-people, but it's nice to have met her.

I'm too tired to write anything more interesting. Bah. Will try to get offline and get something useful done.

Blah. Health is still not fantastic.

Have been achieving sleep moderately successfully via a combination of trazodone and promethiazine. It says a lot about how severe my sleep issues are that neither alone worked, despite the fact that most people who take promethiazine become comatose within 20 minutes. The trazodone appears to help me fall asleep in the first place (though it still takes upward of three hours after taking it before I can consider sleeping) while the promethiazine keeps me asleep, so when I wake up at 5 am to go to the toilet, I can fall asleep again within minutes instead of being awake for hours. Usefully, it seems to be an antihistamine that I'm not allergic to that does actually do something for my allergies, so I am no longer quite the snottiest human alive.

Also, I've had a bad right hip for several months now (it had already hurt for over six weeks before I made that post). Last time I went to the doctor he suggested from where the pain was plus the symptoms (hurts when I exercise, hurts like hell when I stop exercising and sit on the sofa for a couple of hours, really really plays up when I cycle uphill) that I've pulled a ligament that holds my quadriceps muscle to the hip bone. So I've been on a "no cycling uphill" programme of rest, which has mostly been improving things. Except, on Tuesday night, I was in a tearing hurry to get through a queue of traffic to the railway station, and I managed to crash into a (temporarily stationary) car. It was entirely my own fault - I misjudged the timing and turning distance totally (something that I know I have a problem with - this is the main reason I've never attempted to learn to drive. I'm usually safe enough on the trike, but I'd be useless in a normal width car), but this doesn't make me feel any better. The car bumper was entirely undamaged, but I whacked the hell out of my right knee and right upper arm. There is a huge scrape along my right elbow which looks nasty, but it hurts much less than the mysteriously unbruised upper arm and the four enormous bruises on my right knee & lower leg. They hurt a lot, and I'm finding it hard to walk - let alone kneel, and do houseworky things. Bah. Would it have been any better if I'd managed to injure my left knee instead? Probably not - then I'd have two improperly functioning legs instead of one.

And I'm still really tired. Still not quite getting enough sleep and rest because of kids' exams and demand for tuition, and need more sleep than usual because of the injuries. Fun. Today, I've had not much work and have been catching up with livejournal - but I've missed so much that's happened *grumble*. Am supposed to be trying to tidy the place up, but my body isn't really up to it. So we'll have to continue living in a tip for a bit longer.

I am not fantastic. The trazodone isn't agreeing with me. I don't have any serious side-effects, but I don't have any beneficial ones either.

The reason I was on mirtazapine was that it helps me FALL asleep, which is the thing I've had trouble with my whole life. (Honestly? I've been an insomniac since I was a small child. I was prescribed valium at the age of 18 months because my mother was so desperate to get me to sleep, although she was sufficiently freaked out to find a new GP rather than feeding me pills.) Trazodone is also supposed to help with sleep, but it seems to be doing precisely the wrong thing. The first night, I was still awake 6 hours after taking it, and getting increasingly desperate about my ability to get enough sleep before work. Last night, I was still awake 3 hours after taking it, but eventually fell asleep naturally. Then I crashed out for 13 hours and woke up with such low blood sugar that I could hardly get out of bed to find food. (All my body wanted to do was to go back to sleep, which I know from experience is rather dangerous, because then my blood sugar gets so low that I can't wake up by myself at all. It takes someone putting sugar or chocolate into my mouth before I can wake up). Currently, it is about 3 hours since I took it, and although I'm tired, I don't feel sleepy. I'm not convinced that I'll be able to fall asleep if I get into bed and turn the light off.

I can take "2-3 capsules per day", so I could try 3 capsules instead of 2. But I'm not certain that won't make the staying asleep too long worse, while not touching the inability to fall asleep at all. Waking up exhausted because of low blood sugar sucks.

I haven't written anything in livejournal in a week or so because I haven't had enough spare energy. I've been less dead since I read a post by wispfox reminding me that SAD season is starting in the Northern Hemisphere. The first day that I set my lightbox alarm clock, I managed to get up after 10 hours sleep and half an hour lying in bed awakeish, rather than the 12 hours sleep followed by an hour lying in bed going "eurgh" that I'd needed for the whole of the previous week. However, I am clearly still suffering from chronic fatigue, because if I can only get 8 hours sleep I spend the entire day exhausted, and if I get less than 8 hours I'm like a zombie. It's not much fun.

Sometimes when people have chronic fatigue they have to stop working for a while. The thing is, if I stopped working, I probably wouldn't recover any better. I enjoy the work I do and it gives me a reason to get out of bed and get on with life. I know from experience that when I don't have work, I get depressed - which is a particular problem if some aspect of the chronic fatigue is seasonal depression. The best thing for me is to keep going and just make sure that I look after myself. However, it means that I run out what I think of as "brain spoons" before the end of the day.

One of the interesting aspects of spoon management isn't just the idea that we have a limited amount of energy available, but also that there are different types of energy. I notice myself that I have general "physical spoons", "leg & back spoons", "brain spoons" (for thinking with) and "emotional spoons". (Some people think that time is a spoon quantity, but I use "spoon" to mean a quantity of energy. It doesn't mean that I'm right and other people are wrong, just that different people use different terminology.) Sometimes it's necessary to spend one kind of spoon in order to gain others - like when I drag myself into London to see friends. It means that I end up spending some physical spoons and possibly some of my leg spoons depending on how much of a crip I'm being on that particular day, but in return I gain energy from being around other people. But it takes a certain amount of calculation to figure out whether something is going to help or hinder me overall.

So the past few days, I've been working for a few hours, then coming home and sitting in front of the computer doing things that don't need much brain - like sorting out my Sims 2 downloads and hacks ready to install Pets. (It's taken me about 15 hours to update hacks and make backups - I cannot play the game the way it's sold because it's broken in so many ways.) Last night I actually got round to installing the Expansion Pack, so this means that my sim-Ludy will be able to have a sim-Sylvia, and sim-h-l will get to live with a big wolfy. I still have 101 plans for stories that I need to write and videos that I want to shoot, but I simply do not have enough energy :/

Argh. As previously mentioned, this week is Teh Week From Hell workwise. Some of the schools in this area have their half-term this week, meaning that in addition to my regular students, I have 2 hours of group revision classes every day plus random extra boarding school students slotted in around the place. This means that, rather than doing a couple of hours work a day, I'm working more-or-less full time.

Now, people who don't have delayed sleep phase just can't understand what my problem is. You need to be up by 9.30am, so you go to bed before midnight, right? Well, no - it's not that simple for me. If I try to go to bed when not actually sleepy, I will toss and turn for literally hours. And likely, get myself so stressed up that sleep becomes impossible even when I am tired.

Likewise, people think that if a person gets up in the morning, they'll just magically be sleepy at the time they need to go to bed. But again, that doesn't work for me. I can sit on the sofa getting more and more and more tired, and be putting on my pyjamas at 10pm to go to bed - then it'll hit my "most awake" time of 10.20pm and I'll be instantly so wide-awake and wired that I can't possibly sleep until gone 2am anyway.

Then there is the case of my allergies. Last night I was in bed at 1.30am, and asleep by 2.30am, meaning I should have theoretically been capable of getting out of bed at 9.30am this morning. But I had a monstrous snot attack in the night and slept with my mouth open for a while (having tremendously fun lucid science-fiction dreams!), so when my alarm went off I was all exhausted, brain-foggy and confused from the oxygen overdose, as well as achy as hell in my joints. Eventually staggered out of bed like a newborn foal at 10.20am, limbs all shaky and flailing, and would've been late for work had I been forced to take public transport.

At the moment I am managing to get myself to work for an 11am start, but it's hell. I have permanent jetlag in my own time zone, and it rarely gets any better, and most people cannot even begin to understand what it's like. Here I am on Thursday - and I'm doing these hours through to next Saturday. And I've been running on a 2.5 to 3 hour per night sleep deficit for the past 4 nights - and I have 101 health conditions that play up when I don't get enough sleep. Yay.