helen-louise's journal

I wish my husband would stop setting his alarm for 9.30am when he has been up working until 4am & has no intention of leaving for work until 11.30 at the earliest. All it does is wake me up, & enough that I can't readily fall back to sleep. If you wake my belly up, then you wake the rest of me as well. My belly is busy shouting "HUNGRY!" at me & I am trying to placate it with ginger nuts & chocolate milk, but I feel awful from lack of sleep.

Oh yes. And then he has the nerve to snore at me! ARRGH!

Blargh. Have basically done nothing for over a week. Was ill, went to the doctor, otherwise stayed in bed or lay around on the sofa. There's nothing quite like having a nasty virus while it's the time when a woman bleeds for a week but doesn't die. My evil gall bladder decided to start poking me again, for several days, but I refused to give in to its demands. (Gall bladders are remarkably sensitive to oestrogen levels - it's why it's stereotypically "women" and "fat people" who get gall bladder problems. I knew the pain would sod off once I was past that point in my cycle). Read a few books, played a lot of Oblivion. No functioning brain for anything else. My sleep patterns have become well and truly inverted.

And fixing them is hard, because it is Too Dark. Hilariously, the UK and Europe are still in "summer time" (or daylight savings, as the Americans call it). Australia is in "summer time", it doesn't make any logical sense for us Northern Hemispherans to be as well!

Tomorrow I have "volunteered" myself to be in College for 1pm, since it's the only time in the whole week that Philip is available to demonstrate the technique I need to use for the next part of my synthesis. Hooray - I love getting up in the morning! (Yes, it will be morning - I'll have to be up by 11.30am at the absolute latest to get in on time). I also really hope that none of my chemicals have decomposed sitting around for a couple of weeks waiting for me to get in and finish the synthesis. They're supposed to be stable, but I have no proof of that. Urgh.

It's officially Time To Start Using the Lightbox. I'm charging it right now.

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 going to a meeting at another university tomorrow. As a result, I am now pretty much paralysed by anxiety. It doesn't help that I couldn't sleep last night and crawled out of bed today with dark circles round my eyes like a panda. Had some very interesting thoughts about my inability to get to sleep, which I should write down at some point - but I could have done without having them at 5 am!

I just wrote the following load of witter in an email to Philip. It fairly accurately sums up how I'm feeling:

> I'm happy to get the 11:05 from Waterloo, if you would still prefer that.

Right now I'm thinking I'd *prefer* spending the day in bed - my sleep patterns are beyond messed up and I'm extremely anxious. But I have to start going to meetings with other scientists soon - total avoidance isn't a good strategy long term, and the sooner I start the sooner it'll get easier. Maybe. People Are Scary.

One of the things I've found weird is that when people find out you're a student, they automatically ask what you're working on and expect some sort of detailed answer. Given that I've only just started and don't really know any details yet, I'd be so much happier to talk about what THEY're working on. I think it's some sort of misguided attempt to avoid scaring me with their great knowledge, but I find it more intimidating than friendly. It's probably some sort of clash between my own poor social skills and other scientists' poor social skills.

There should be classes on interpreting body language and other interpersonal skills as a compulsory part of science degrees. Especially at nerd-havens like Imperial. Put me in a room full of geeks with the same social expectations, and I get on just fine. Put me in a room full of people who have been normally-socialised, and I don't even know where to start (#). It gets even more complicated when you *don't know* whether the person you're talking to has Geek or Normal social skills! And then the incredibly difficult mixture of people on the autistic spectrum plus people with high social anxiety plus people with no autistic traits or social anxiety who have no idea what it's like to have them.

(#) I avoid my family as much as possible for this reason, with the exception of my mum, who is as much of a geek as it's possible to be having grown up in the time when Girls Didn't Do Science and having had no formal education since the age of 14. Richard's family, however, are all scientists or engineers, so I can talk to them about things that *I* consider usual topics for conversation rather than the weather, That Television Programme or That Sports Team.


> I might need to do some other bits of work on the train, after we have done our formal meeting chat.

Well, yeah - I wasn't exactly expecting that we'd sit and chat about the weather or That Sports Team for an hour and half :) I may bring my laptop, haven't decided yet. Not feeling sufficiently brain-ful to make a decision about *anything*. I'm anticipating half an hour of panic in front of my bedroom mirror later on tonight while I try on every item of clothing I own that is even vaguely acceptable for the occasion. You might wonder why I'd bother, given that most scientists have the approach to clothes that anything is okay as long as it covers up the parts that should be covered in public and is not actively smelly. (That's the attitude I go with at college). But if you're female in a room full of strangers, people *do* notice what you're wearing and judge you on it. The few other female scientists there are THE WORST for this! (Ask $your_girlfriend, I'm sure she'll agree). So I need to try to find something that makes me feel comfortable and confident, but also has pockets.

I witter when I'm anxious,
helen-louise.

Also, I feel sick. And I'm supposed to get some work done tonight to bring with me tomorrow!

I am sitting on a train on my way to eat dinner, and I thought I'd “catch up” with all the livejournal entries I've been writing in my head over the past few days. Unfortunately it seems that being on a train inhibits my ability to write about Difficult Things (TM), which rather negates the point of bringing the laptop. Hmm. Also, it seems that the “t” key is experiencing serious issues, in that I hit it and it only registers 50% of the time. I suspect crumbs in the keyboard, not that I ever eat over my laptop or use it in lieu of a plate *cough*...

I have been miserable for a good few weeks now, owing to the severe lack of daylight. This has not been helped by the fact my sleep patterns have completely inverted and I have been falling asleep around 7 am (!) and mostly unable to get out of bed before 5 pm (!!). The problem is that having Delayed Sleep Phase Syndrome, the usual techniques for restoring a normal sleep-wake cycle don't work. ( Read more... )

Through application of SCIENCE to the problem, I've discovered that it's not just my sleep-wake cycle but other circadian rhythms that get messed up. The reason why I can't wake up too much earlier is because my body temperature is too low. Usually, it's spot on 37.0 °C while I'm awake, but “too early” it can be as low as 36.3 °C. Okay, that doesn't sound like much of a difference – but we are homiothermic and our body temperature does only vary within a degree or so. If I am ill and have a mild fever of only 37.5°C, my brain feels “fried” and it takes serious effort for me to think. Clearly my brain is highly sensitive to temperature changes.

I need to get a) a lamp so I can have the abnormally bright “blue” lightbulb above my eyes in the mornings without it also being the main light source in the bedroom (as it bothered EVERYONE else who came to the house while it was installed, and is way too stimulating for me at night time), and b) some yellow ski goggles (research has shown that people with DSPS and bipolar II may be oversensitive to blue light, so should wear yellow filters when watching TV or using a computer in the evenings to avoid the light keeping them awake). This requires a) motivation and b) going into a ski shop. I'm not sure how this is to be achieved, considering that motivation requires... oooh, getting enough sleep and hours of sunlight.

Home from my travels. Think I'd have a serious case of anti-climax if I wasn't so tired :( Only managed to fall asleep a few minutes before the plane landed, so walking from the plane to passport control and the baggage reclaim was "fun" because I kept falling asleep on my feet. Even Richard (who could sleep for his country) only managed an hour and a half, and he was lying across three seats with his head on my lap, as opposed to sitting up like I was. Not good.

Got in and slept until 10.30pm or so. Now about ready to drop off again. Will be tired for a few days, I think. Have got through the trip on painkillers and vitamin pills, so it'll be a while before I've caught up on my spoon level. Argh.

Isn't anyone going to comment on my last entry?

Argh.

Tuesday night - took Zopiclone nice and early and crashed out for 10 hours, in which time Richard says I did not move at all. (Although he wasn't worried because I was obviously still breathing). Had strange but pleasant-enough dreams.

Wednesday night - took Zopiclone a bit too late (i.e. after I was already tired enough to sleep), and slept awfully - waking up every 2 hours or so at first, then at increasing intervals from 8ish until my alarm went off at 12.30. Apparently I kept waking up shouting, which is never a good sign. Had bad dreams and eventually woke up having a panic attack. Managed to get myself into college a mere hour late by virtue of LOUD MUSIC in my ears to block out the outside world, and sitting down whenever the urge to pass out or puke got too strong. 

Thursday night - took Zopiclone early. Crashed out and slept reasonably well, but still woke up periodically needing to pee or because I was itchy. Appear to have the delightful and mysterious rash of maybe carbamazepine back again, yay - again, starting a week after I increased the dose. Hoping this is a transient effect and will go away once my body is used to 400 mg. Currently been up for over 3 hours but sorely tempted to go back to bed. Neither happy nor feeling like a human being at the moment.

I'd say "kill me now", but I have been ordered by Freezepop to "hang in there". And the last thing any deranged fangirl wants to do is make their favourite band unhappy, right? So it's one step forward, another step back - and hoping for an overall slow lurch in the right direction.

I'm sorry that I'm so tied up with my own damn problems at the moment. Am being a lousy friend :( But exams are 21st May until 8th June, and after they're over I should have a lot more time & energy for other people.

Am having a weekend. STILL armpit deep in coursework, and I have to get my tax return done by Friday :/ The deadline is actually Saturday, but I've discovered before that the website doesn't work well on the final day because of sheer numbers of panicked last-minute submissions. Also, I'm pretty sure that if you use the online billpayer on a Saturday, you end up paying a small amount of interest because it doesn't go through until the next working day, Monday. I just had the amazing idea of paying my mum to do my tax return as she knows how to do them, but even then I still have all the coursework to get done. Urgh.

And I'm so very sleepy. Was working until about 5.30 am last night. I think it's pointless going to bed if I'm still getting useful work done - I tend not to bother trying until I'm at the point where my brain can't do simple arithmetic. Had to get up at 11 am to teach a student. When she went at 1.20 pm (having stayed 20 minutes over her time!) I went back to bed, and told Richard to wake me in a couple of hours. Promptly zonked out until 6.20 pm, and was too tired to get up for another hour. Am now continuing to fight the lab reports which have been expanding to more-than-fill the time available, but I'm so sick of them and I've still got so much to do.

If anyone has the power to stop the Earth for a couple of weeks, just to let me catch up, please let me know - I'll be ever so grateful!

Argh. We decided it's time for some serious de-junking of the house, and in particular, the garden. Our back garden is a mess of dead decking, rubble, and one monstrous triffid. So Richard walked around the immediate couple of roads and made a note of all the phone numbers on skips, and I rang the companies to find out prices etc. I told all of them that the skip would have to go on the road in a parking space and asked whether they could get the necessary permit from the council for this. One of them couldn't, we'd have to apply to the council ourselves, so we didn't bother with them - the rest all had contracts. I made it very clear that the skip had to go in a residents' parking bay, how long would the permission take? and they all said one day. I was rather unconvinced about this "one day" because I was sure when we'd been looking at getting a skip a few years ago it'd been more like one week, but they all said the same thing so I believed them. (BIG MISTAKE!)

I ordered the skip on Wednesday just to make sure the council permission was in place, but there was no sign of the parking space being suspended last night. So I wrote a note to all the neighbours telling them a skip would be coming. The skip lorry came this morning at 6.55 am. Of course, there wasn't any space on the road, as it was too early for anyone to have taken their car to work. The driver waited around a bit but no cars moved, so he had to go back, and said it would be redelivered "later". Just to make this worse, I only fell asleep last night sometime after 5 am, because I had galloping raving insomnia. Argh.

So I've been drowsing on and off all day, jumping every time there's been a knock on the door or a lorry noise. And when a parking space became free, I put the tricycle in it with all the locks on and a note explaining it was there to reserve the space for a skip. (Chairs might have been better, but it's been drizzling all day and most of our chairs don't like getting wet.) Now the skip isn't going to come until tomorrow, but this is less worrying because we have the immediate next-door neighbour's car in the space and we can call her in the morning to move it. Nonetheless, I really didn't need a day of nowhere near enough sleep!

There are very rare occasions when I regret our environmental stance on car ownership. This would be one of those. A car of our own blocking the space would have made the whole thing so much easier. And for future reference, though I kinda hope that we'll never need a skip again - it really does take longer than one day to get parking bays suspended.