I've been meaning to post about this for ages! It's my Big Thing, the techniques I found which control the circadian rhythm problems I developed. I would really love to know how well they work for other people, as well as generally spreading the gospel of Blue Light And How You Can Mess Around With It.
Firstly, I reckon this affects everyone in an industrialised society to a greater or lesser extent. If you're housebound, it's a far greater extent. Humans evolved outdoors, with strong daylight during the day and absolute darkness at night. Now we get weak indoor lighting which is only a fraction of the strength of outdoor light, and use artificial lighting after nightfall. It's specifically the blue part of the light spectrum which affects our body clocks, around 465nm. Blue light will stimulate serotonin and make your body think that it's morning if you get a good strong burst of it then, but the smallest bit of blue light in the evening will suppress melatonin production and keep you up late. Computer screens and TVs emit an awful lot of blue light, which is why they're absolutely diabolical for murdering sleep patterns. I'm sure many of us here have been happily chatting to someone online, and suddenly realised that it's 5 am, you're freezing cold, and you're far too wired to sleep. Melatonin is crucial stuff, and messed up circadian rhythms have been linked to various alarming things, such as sky-high breast cancer rates in shift workers.
I've always been a poor sleeper with an odd sleep pattern, but a few years into having ME, I developed Delayed Sleep Phase Syndrome (DSPS). This is basically where your body clock is determined to run a few hours too late, so that you can't get to sleep earlier than 4 am, say. After a few years, this deteriorated in Non-24 Sleep-Wake Cycle (N24), which is where your body is running on a circadian rhythm other than 24 hours. It's a well-known phenomenon in people who are completely blind, with a cycle which is typically 25-26 hours long. Every day I would fall asleep an hour later than the previous day, which made my life completely chaotic and made it very hard to get a good long stretch of sleep at any one point without interruptions. Long-term sleeping meds didn't do a thing, including melatonin tablets. I reckon that the blue light I was exposed to in the evenings was counteracting the artificial melatonin, but who knows. I did find the odd sleeping med which worked short-term, but wasn't safe to take for more than a few days at a time.
Eventually I discovered bright light therapy. I bought a good quality lightbox, the therapeutic sort aimed at people with Seasonal Affective Disorder (SAD), and started using it first thing in the morning, although "morning" was rather a relative term back then. My sleep pattern promptly stabilised at 24 hours. It didn't stabilise at a very convenient location, I still tended to fall asleep closer to the time most people are getting up, but it was a definite improvement. I was keeping sleep diaries that year so it was very easy to see the effects. (Although not for the sleep specialist I saw, at a clinic where the lab techs literally hadn't heard of circadian rhythm disorders. All they dealt with was sleep apnoea and narcolepsy, it seemed.) I also bought a dawn simulator, and found that it was fairly good at waking me up as long as I was on a reasonably regular schedule, and probably helped boost my sleep patterns a wee bit.
A few years later, I stumbled across darkness therapy. This isn't quite what it sounds like. In some of the research, people were placed in total darkness for up to 14 hours out of the 24, but while it was surprisingly good at tackling rapid-cycling bipolar disorder, the researchers quickly spotted that it's not very livable and patient compliance would be an issue. (Although I think the main issue here is that there's no nice little drug to sell, which is probably why it's never taken off particularly well.) Then they realised that all you really need to do is to create virtual darkness by blocking or omitting all blue light.
The cheap version of this involves buying a few light bulbs with yellow, orange or red coatings (solid coatings, please), and an orange gel filter to sling over your computer and/or TV screens (I picked mine up as a free sample from a theatrical lighting company). It's a bit of a faff, and in my case it was awkward because my partner has severe myopia and as a result is insanely sensitive to coloured light. The convenient version is to use glasses which block all blue light. There are various ways you can do this. Since I have to wear prescription specs, and found that wearing an additional pair of tinted glasses on top was horribly uncomfortable as well as looking distinctly creepy, I tried out the cheap methods until I was sure that they worked and then forked out for a new pair of glasses with an orange tint, 50% saturation. I put them on about three hours before I want to go to bed, and keep the lights lower as well. If I get up during the night, I am careful to avoid any blue light, which means that I have the odd red bike light around and have learned to go to the loo in the dark. I've also worked at lightproofing the bedroom with blackout blinds and such, since that's important too, especially in the summer if you're far enough to the north.
I found that the effect was roughly similar to a good sleeping tablet for me. For the first time in as long as I can remember, I was getting sleepy at the time ordained by society, and in fact was annoying my other half by falling asleep halfway through an episode of something silly on TV, at the peculiar hour of eleven-thirty! With a bit of experimentation, I managed to set my sleep schedule up to match my partner's. I could now book appointments without worrying that I'd be asleep during them, and get my support workers to come earlier in the day. My sleep's far less likely to be interrupted by the phone, postman, my partner getting up and so forth, so between that and the melatonin hit, the quality is a lot better. Now that I'm on a fairly regular schedule, I've managed to get my mealtimes on a good schedule as well, which has helped various things such as blood sugar. Obviously it's not perfect, as it wouldn't be ME if you didn't wake up feeling like a dead rat, but it's hugely improved. Bad patches of sleep are now rare, and I will sulk about the occasional night of what to me is now poor sleep when in the old days, it would have been bloody fantastic by comparison. (And at the moment, weeks of poor sleep courtesy of gabapentin withdrawal, but it seems to be starting to settle down again.)
I would love to hear from anyone else who has tried any of this or is interested in trying it. If you fancy finding out just how appalling your sleep pattern is, go and fill out the Morningness-Eveningness Questionnaire linked to below, as I'm curious to know how we all compare in this respect. Ignore the snooty little remark which may come up after two questions about how the MEQ wasn't designed for people whose sleep is as screwed up as yours; it's still a useful tool, even if you have to pick the closest answer and it's still a few hours off, not to mention pretend that you are capable of work and exercise and so forth. Sarcastic responses to questions such as "how would you feel if a friend suggested exercising at 7-8 am?" are welcomed. I originally scored 15, which is off the charts for eveningness, and now score 49, right in the middle of the "intermediate" section.
Useful links
In Search of Mornings - my personal web site which goes into all of this in a lot more detail. There's also a links page there with various useful places you can visit.
Morningness-Eveningness Questionnaire - useful to find out what sort of circadian rhythm problem you have, and for monitoring progress. If you're anything like I was when I started, you'll be off the charts. Their advice for light therapy treatment times should be taken with a pinch of salt, however.
Medhelp Sleep Tracker - reasonably good site for tracking your sleep patterns. Annoyingly, you can't track treatment times, which is sort of key with light therapy and darkness therapy. I ended up making a weirdly complicated spreadsheet graph to do that myself, which I am not even going to begin to explain as I don't think I can remember how I did it!
Firstly, I reckon this affects everyone in an industrialised society to a greater or lesser extent. If you're housebound, it's a far greater extent. Humans evolved outdoors, with strong daylight during the day and absolute darkness at night. Now we get weak indoor lighting which is only a fraction of the strength of outdoor light, and use artificial lighting after nightfall. It's specifically the blue part of the light spectrum which affects our body clocks, around 465nm. Blue light will stimulate serotonin and make your body think that it's morning if you get a good strong burst of it then, but the smallest bit of blue light in the evening will suppress melatonin production and keep you up late. Computer screens and TVs emit an awful lot of blue light, which is why they're absolutely diabolical for murdering sleep patterns. I'm sure many of us here have been happily chatting to someone online, and suddenly realised that it's 5 am, you're freezing cold, and you're far too wired to sleep. Melatonin is crucial stuff, and messed up circadian rhythms have been linked to various alarming things, such as sky-high breast cancer rates in shift workers.
I've always been a poor sleeper with an odd sleep pattern, but a few years into having ME, I developed Delayed Sleep Phase Syndrome (DSPS). This is basically where your body clock is determined to run a few hours too late, so that you can't get to sleep earlier than 4 am, say. After a few years, this deteriorated in Non-24 Sleep-Wake Cycle (N24), which is where your body is running on a circadian rhythm other than 24 hours. It's a well-known phenomenon in people who are completely blind, with a cycle which is typically 25-26 hours long. Every day I would fall asleep an hour later than the previous day, which made my life completely chaotic and made it very hard to get a good long stretch of sleep at any one point without interruptions. Long-term sleeping meds didn't do a thing, including melatonin tablets. I reckon that the blue light I was exposed to in the evenings was counteracting the artificial melatonin, but who knows. I did find the odd sleeping med which worked short-term, but wasn't safe to take for more than a few days at a time.
Eventually I discovered bright light therapy. I bought a good quality lightbox, the therapeutic sort aimed at people with Seasonal Affective Disorder (SAD), and started using it first thing in the morning, although "morning" was rather a relative term back then. My sleep pattern promptly stabilised at 24 hours. It didn't stabilise at a very convenient location, I still tended to fall asleep closer to the time most people are getting up, but it was a definite improvement. I was keeping sleep diaries that year so it was very easy to see the effects. (Although not for the sleep specialist I saw, at a clinic where the lab techs literally hadn't heard of circadian rhythm disorders. All they dealt with was sleep apnoea and narcolepsy, it seemed.) I also bought a dawn simulator, and found that it was fairly good at waking me up as long as I was on a reasonably regular schedule, and probably helped boost my sleep patterns a wee bit.
A few years later, I stumbled across darkness therapy. This isn't quite what it sounds like. In some of the research, people were placed in total darkness for up to 14 hours out of the 24, but while it was surprisingly good at tackling rapid-cycling bipolar disorder, the researchers quickly spotted that it's not very livable and patient compliance would be an issue. (Although I think the main issue here is that there's no nice little drug to sell, which is probably why it's never taken off particularly well.) Then they realised that all you really need to do is to create virtual darkness by blocking or omitting all blue light.
The cheap version of this involves buying a few light bulbs with yellow, orange or red coatings (solid coatings, please), and an orange gel filter to sling over your computer and/or TV screens (I picked mine up as a free sample from a theatrical lighting company). It's a bit of a faff, and in my case it was awkward because my partner has severe myopia and as a result is insanely sensitive to coloured light. The convenient version is to use glasses which block all blue light. There are various ways you can do this. Since I have to wear prescription specs, and found that wearing an additional pair of tinted glasses on top was horribly uncomfortable as well as looking distinctly creepy, I tried out the cheap methods until I was sure that they worked and then forked out for a new pair of glasses with an orange tint, 50% saturation. I put them on about three hours before I want to go to bed, and keep the lights lower as well. If I get up during the night, I am careful to avoid any blue light, which means that I have the odd red bike light around and have learned to go to the loo in the dark. I've also worked at lightproofing the bedroom with blackout blinds and such, since that's important too, especially in the summer if you're far enough to the north.
I found that the effect was roughly similar to a good sleeping tablet for me. For the first time in as long as I can remember, I was getting sleepy at the time ordained by society, and in fact was annoying my other half by falling asleep halfway through an episode of something silly on TV, at the peculiar hour of eleven-thirty! With a bit of experimentation, I managed to set my sleep schedule up to match my partner's. I could now book appointments without worrying that I'd be asleep during them, and get my support workers to come earlier in the day. My sleep's far less likely to be interrupted by the phone, postman, my partner getting up and so forth, so between that and the melatonin hit, the quality is a lot better. Now that I'm on a fairly regular schedule, I've managed to get my mealtimes on a good schedule as well, which has helped various things such as blood sugar. Obviously it's not perfect, as it wouldn't be ME if you didn't wake up feeling like a dead rat, but it's hugely improved. Bad patches of sleep are now rare, and I will sulk about the occasional night of what to me is now poor sleep when in the old days, it would have been bloody fantastic by comparison. (And at the moment, weeks of poor sleep courtesy of gabapentin withdrawal, but it seems to be starting to settle down again.)
I would love to hear from anyone else who has tried any of this or is interested in trying it. If you fancy finding out just how appalling your sleep pattern is, go and fill out the Morningness-Eveningness Questionnaire linked to below, as I'm curious to know how we all compare in this respect. Ignore the snooty little remark which may come up after two questions about how the MEQ wasn't designed for people whose sleep is as screwed up as yours; it's still a useful tool, even if you have to pick the closest answer and it's still a few hours off, not to mention pretend that you are capable of work and exercise and so forth. Sarcastic responses to questions such as "how would you feel if a friend suggested exercising at 7-8 am?" are welcomed. I originally scored 15, which is off the charts for eveningness, and now score 49, right in the middle of the "intermediate" section.
Useful links
In Search of Mornings - my personal web site which goes into all of this in a lot more detail. There's also a links page there with various useful places you can visit.
Morningness-Eveningness Questionnaire - useful to find out what sort of circadian rhythm problem you have, and for monitoring progress. If you're anything like I was when I started, you'll be off the charts. Their advice for light therapy treatment times should be taken with a pinch of salt, however.
Medhelp Sleep Tracker - reasonably good site for tracking your sleep patterns. Annoyingly, you can't track treatment times, which is sort of key with light therapy and darkness therapy. I ended up making a weirdly complicated spreadsheet graph to do that myself, which I am not even going to begin to explain as I don't think I can remember how I did it!