Category Archives: DSPD

Daytime

I’m very unexpectedly awake in the daytime! This has happened as a result of trying to go to the neurological disorders support group yesterday. I say “trying to go” because in the end I was too exhausted to make the journey.

It’s sort of complicated, and I don’t fully comprehend it myself, but when my body hits its “time to sleep” point, I have a window of about 15 minutes where sleep is actually likely or even possible. Once I pass that time window, all bets are off. Occasionally I’ll still be able to drop off, but usually what happens is that I’m then stuck being awake (but extremely tired, both physically and mentally) for what seem to be multiples of about 4 hours.

What happened yesterday was that I ended up being awake until about 8pm.

Now, before I continue, I should try and explain something – people have this misconception that I sleep for too little or too long a time. That’s not how N24 (on its own) works. In fact, I generally sleep for about 7 to 8 hours a ‘night’, just like most other people, it’s just that what my body thinks is ‘night’ moves around the clock.

Before I knew what N24 was, or that I had it, I was of course still trying to live to the usual 24-hour clock. I had to, for things like school, work, appointments, etc.
An equivalent would be like a normal person having to get up a couple of hours earlier every single day. This resulted in many things, but two of the most visible were that I would not be able to get to sleep until odd times, and then when I did sleep, it would be deep.

If I needed to be woken, it would take a lot – for a long time, I had no less than 7 different alarm clocks (including digital ‘beep’ types and old-fashioned ones with bells) with multiple timers set where possible, plus people ringing me on the ‘phone, and it would usually still take physical action (such as being shaken) to even half-wake me. It got to the point where I would even deactivate the alarms in my sleep, or answer the telephone and have a conversation while being completely unaware of it, before shutting down again.

On the occasions where I was left to sleep undisturbed, such as weekends, I always slept for a minimum of 12 hours, and often much longer, including going to sleep on Friday evening and waking on Monday morning in some cases.

Even when I was awake, I was still extremely tired and couldn’t think clearly for long periods of time. Lots of other health issues arose too, but that’s for another time.

The reason all that sort of thing was happening was because I had a massive backlog of sleep – a sleep deficit.

Now that I’m living to my body’s own distorted version of day/night, I’ve caught up on the missing sleep. It took quite a while for the catching-up to happen, about two years, I think, from when I had to retire from working life, but eventually I found that when left to sleep undisturbed, the average time I slept for crept down from about 12 hours to a more normal 7½ hours.

All that said, I do still sleep very deeply, just not for as long. We don’t get many earthquakes here in the UK, and those that we do have are not at all severe, but even in my current situation of not-being-forever-sleep-deprived, I have slept through them. Also, some time ago there was an explosion in a house in my street, 4 doors down. Our houses are narrow, Victorian terraces, so it’s not like there was a lot of distance between it and me. I slept through the explosion itself, and the emergency services trying to evacuate the residents. I woke up hours later to find the entire street cordened off, with pieces of my neighbour’s house strewn across it. While it’s a bit of an extreme case, I think it shows that sleep disorders can be dangerous in non-obvious ways. It was only chance that the explosion hadn’t caused the surrounding houses to be set on fire, or brought the roofs in. If I’d been awake I’d have had a chance of getting out, but asleep, I doubt I’d have been so lucky. How dramatic!

Now, to bring this back to where I was going; I fell asleep at about 8pm last night, so I expected that I’d probably sleep til about 4am.
The thing is, if I hadn’t had the problem falling asleep eariler in the day, I’d actually be due to wake up at some time between 11pm and 1am, and that’s exactly what happened. Despite having been awake for over 20 hours, I only slept for 4. I managed to drop off again at around 02:30, at which point I got the other 4 hours, and woke up at 06:30, which is fantastic.

“Well, there you go! Why don’t you just do that all the time, then?” you may ask. The reason is that it’s very unpredictable and rarely puts me somewhere useful.
Back in my teens and 20s, I did use this method to try and reset my sleep patterns, with some success. Bear in mind that I’d never even heard of a circadian rhythm disorder – I didn’t know what I was doing, I was just trying to find a way to outsmart my weird sleeping problem. It meant I was even more tired, clumsy and forgetful than usual, but at least I was awake at the Right Times.

As time went on though, it became less and less effective. It may even be what caused me to develop N24. In an earlier post, I mentioned how the problems I had getting to sleep began in my early teens, with the time I was able to fall asleep (known as the sleep-onset time) creeping later over a period of years – from being normal at around age 10, to being in the early hours by my mid-teens. It was in my late-teens/early-20s when the ‘brakes’ came off and I began to rapidly move around the clock, with the sleep-onset time changing by the day.

I suspect now that I may have had a related circadian rhythm disorder, Delayed Sleep Phase Disorder (DSPD) during this time, and my attempts at ‘resetting’ my clock by staying awake overnight (so that I wouldn’t be late for school, and later work) caused the disorder to deteriorate. I don’t have any proof of this, nor will I ever, however it makes sense based on anecdotal comments from other several other sighted N24 sufferers.

In hindsight, I think of my doing these sorts of ‘forced resets’ as a bit like overwinding a clock. Eventually, it did so much damage to whatever neurological mechanisms there are for keeping track of how long a day is, that it’s seemingly irreparable.

Another reason I no longer try to mess about with my sleep patterns is because the last time I did one of these ‘resets’ on purpose, it triggered an horrific bout of insomnia (actually hyposomnia, the inability to sleep) which lasted for four days. Now, I don’t mean I had trouble nodding off, I mean I literally did not even feel tired, at all. My body was still experiencing the effects however, and this manifested in bizarre ways, at first with simple memory gaps and a feeling of unease, but later with my developing a stammer, nervous tics and hallucinations. When they say sleep deprivation is a form of torture, they are not joking. By the time I got to day 4, I had to be medicated to sleep by my GP.
You may understand from this why I’m reluctant to trifle any further with what my body tells me regarding sleep…

I have no idea what time I’ll sleep tonight – it may be at a relatively normal time, since I woke at 06:30, or it may be that I won’t be able to sleep until the time I would have naturally fallen asleep had I not had this welcome, unexpected blip, which means I’ll either be asleep very shortly, or not til about noon tomorrow. Or it might be some other time entirely. I’m slightly fearful that I won’t sleep, as happened that last time, however if that situation arises again I will have no compunction in getting to the doctors at the earliest opportunity. I am not going through that again.

So, here I am in an unexpected daytime. It’s Summer here in England which means, much like Spring, Autumn and Winter, the sun is hidden behind a thick blanket of gunmetal-grey cloud, it’s been raining and the wind is picking up. Even so, it’s nice to be awake in the daytime. I’ve managed to get some of my ‘daytime things’ done, including treating myself to a loaf of fresh bread instead of the generic, tasteless, preservative-saturated stuff from the late-night shop.