About me

I’ve had sleeping problems since I was twelve and more particularly since I developed ME/CFIDS thirteen years ago.  My local sleep clinic doesn’t deal with circadian rhythm disorders so I never got a formal diagnosis, but I was showing all the symptoms of Non-24 Sleep-Wake Disorder combined with Delayed Sleep Phase Syndrome.  Over the years I’ve amassed a lot of knowledge by now, some of it fairly well-known, some of it very little-known, and experimented with dozens of different therapies for sleep.  Using the CET Morningness-Eveningness questionnaire, I have gone from being a 15 (off their scale for extreme eveningness/DSPS) to a 49 (bang in the middle).  I wouldn’t say that my sleep is perfect now, I’m probably still not getting quite enough deep sleep due to the ME, but apart from that it is hugely improved in a number ways.

Longer history

My sleep story most likely begins at birth.  Being a month early, I was whisked into an incubator and put under blue light to treat the jaundice that is common in premature babies.  Modern research is finding that the constant bright light that newborns can be exposed to in hospital, with no night/day patterns, significantly affects their sleeping patterns and increases the likelihood that they will experience circadian rhythm disorders in later life, as “the first few months are a kind of training camp for the baby’s sleep in the future”.  (I read an article which came to the above conclusion more precisely, but unfortunately failed to bookmark and have not been able to find it since.)  As I was exposed to bright blue light, which is the type of light most likely to affect circadian rhythm, I would assume that this effect was increased.

As far as I know, my sleep problems did not begin to show up until I was 12 or so.  Around this time, I would come home from school and fall straight into bed for a few hours, too tired to keep my eyes open, and then stay up late in the evening.  Attempts to shift me to a more conventional sleeping pattern failed, although I now know that a biphasic (siesta) pattern is normal for many people, and that it is completely natural for teenagers to fall asleep and wake up later.  I wasn’t using computers or the television in the evening, as teenagers today do, but I was happily reading late, sometimes very late indeed if I was engrossed in a book.  Apart from this, I was still quite morning-friendly.  I got up at 6 as I liked to pootle around slowly and read the newspaper, left for school at 7.45, and on days when I needed to finish extra homework, would get up as early as 4 the next morning rather than staying up late at night.  This was the last time in my life that I’d be able to do this.

Five months into my first year at university, I developed ME.  I spent most of that first year asleep, sleeping anything up to 16 or more hours a day, as is common in early-stage ME.  After that I reverted to a more usual number of hours’ sleep a night, but my sleep was of poor quality and my circadian rhythms slowly became worse and worse.  First I developed DSPS, falling asleep at unholy o’clock in the morning.  Morning lectures were a disaster when I managed to struggle to them, and after a year or so I didn’t even try.  After some years I developed Non-24 Sleep-Wake Disorder, probably because by this time I was mostly housebound and getting almost no exposure to natural daylight.  My sleep cycle was 25 hours long, so that I was sleeping at a different time every day and constantly having my sleep broken by the post, the phone, the daylight coming through the curtains., and having to get up when I hadn’t had enough sleep.  When it did occasionally settle at 24 hours, it would invariably do so when I was falling asleep at 6 or even 9 am.  It was a nightmare.  I was constantly missing appointments, I found that even restricting my university classes to the afternoon wasn’t reliable, people never knew when it was safe to ring me, I had terrible trouble getting basic shopping done, and I was absolutely exhausted from all the sleep deprivation.  I tried various treatments, such as staying up all night, forcing myself to get out of bed and even staying up 3 hours later every night, but nothing worked and I would invariably end up even more shattered and with my sleep pattern worse than before.

In 2005 I discovered light therapy and began to use a bright lightbox just after waking.  My sleep cycle instantly settled at 24 hours.  Getting it to settle at the right time of day was harder, and it would creep out of synch every few months, especially as I had a habit of staying on the computer until too late in the evening, or would occasionally take a siesta and then find that it pushed my bedtime forward by several hours.  Once my bedtime had been moved forward, even for a single night, it would either stay there or move even further forward; it would never move back naturally.  Every now and then I’d push it back with a three-day regime of sleeping tablets an hour earlier every night and bright light therapy earlier every morning.  I settled for a fairly late regular bedtime since I seemed to be an incurable night owl, and told people not to phone me in the morning.  It was a major improvement for which I was very grateful, but my sleep was far from perfect, and I was still sleeping very brokenly.

In 2009 I started to experiment with darkness therapy, first with coloured bulbs and computer screen filters, then with tinted glasses.  Around this time I also found a herbal sleep aid that helped me, although once I had been using the tinted glasses for a few months I found that I no longer needed the herbs.  If light therapy was the first sleep miracle for me, darkness therapy was the second.  I now have my sleep cycle exactly where I want it, and never cease to be amazed that I can feel sleepy in the evenings and even go to bed before midnight.  My sleep is more solid, I wake far less during the night and it’s now rare for me to have trouble getting back to sleep when I do so.  I get up around 8.30 in the morning and no longer have to worry about being woken by phone calls, apart from the occasional days when I take afternoon naps.  Napping no longer disturbs my night’s sleep, however, and it’s possible that I just need the extra sleep because of the ME.

The next question is how all of this affects the ME.  ME is such a complex condition that it is surprisingly hard to tell what’s happening long-term, and I think that any improvements caused by better sleep will take at least a year to show up, especially since my overall pattern since the start has been steady deterioration.  I do know that the ME is worse when I sleep badly, and that while improving my sleep is unlikely to cure the ME, at the very least it will slow its progress.  Life is certainly a great deal easier now that I am finally sleeping at normal hours again.

One Comment on “About me”

  1. Do you know about this?


    just bought mine at http://www.look-after-yourself.com by calling them directly on +441704500505 and spesifying that I wanted the cheapest postage option with ZERO declared value and receipt sent seperatly or by email (to avoid extra in-country charges!)…

    PS I’m not doing propaganda 😀 just wanna share the knowledge! ♥

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