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.

3 thoughts on “Daytime”

  1. I’m sorry to see you having these difficulties, with you having to stop working and experiencing isolation. 🙁

    Have you applied for Personal Independence Payments (PIP)? http://www.benefitsandwork.co.uk is a good site to start with. If you decide to apply, take the perspective of you on your worst day (and think of ALL difficulties you have, regardless of whether they specifically relate to N24) as they use a points-based system when determining whether you’re eligible. Your local council should have a Welfare Rights officer to help, along with the CAB (and/or other welfare rights organisations) whom might also help.

    It might also be worthwhile investigating the strand of ESA you’re on (you may be on the ‘Work-related Activity Group’ or WRAG strand). I mention this because the ‘Support’ strand offer more money and doesn’t entail you being chased by work agencies for ‘work-related training’ like CV workshops. If you claim PIP and ESA, then you may then also get disability supplements which will help ease the financial burden (quite considerably!).

    To aid in travel costs, a concessionary bus pass might also be useful to apply for. (used for the purpose of attending appointments, for example) I’m not sure where you live, so can’t point you in the direction of the relevant page of your local transport executive.

    Also, you state that you have N24, which is incredibly rare in those that are sighted, however looking at your posts I think you might have Asperger Syndrome. N24 is 3x more prevalent in those with this other neurological condition. You seem exceedingly high functioning and VERY clever, yet quirky which is a good thing. Your need for order (but not necessarily knowing where to start) and collections are classic traits, as are your propensity towards programming (and similar grammatical processes) and being a little disorganised and having some ‘cloudy’ days, along with the clumsiness that seems to accompany them. Feeling like there’s something else (which you can’t quite put your finger on) and feeling anxious/unease about things can also be indicative, especially if it’s a pervasive unease. That you seemed to have needed more sleep after work (i.e. interacting with people in a [probably] taxing environment) indicates to me that you didn’t get enough recovery time, taking it out of you.

    Again, this is a big hint for me that this might be something that applies to you. I think it’s worth investigating and might explain other difficulties you’ve had, including executive function, hopefully providing the context you might need. Tony Attwood’s “The Complete Guide to Asperger’s Syndrome” is a good start. You might experience resistance from this, due to ignorance from GPs (possibly looking for stereotypical signs of Aspergers – I suspect you present well), but it is your RIGHT to have this assessment if you wish to have one.

    Your digestive issues might also be part of this, as that is a common co-occurring issue, in addition to the N24. Have they assessed you for IBS or Crohn’s Disease? The fact that you’re expelling blood (in the faecal matter?) is a big warning sign & I hope that you have this investigated. Do you find that you need prompting to eat and drink, i.e. if left to your own devices that you ‘forget’. I’d also recommend having your headaches looked into (perhaps you might not be drinking enough?).

    If I’ve made any undue assumptions, please accept my apologies, I mean well. Hopefully some of this comment post has value for you.

    Elton

    1. I mentioned the above, as these things – like diagnosis for Aspergers – tends to come out when things fall apart and one is unable to cope (i.e. the system that provided order – however tenuous – ceases to exist) and one finds oneself in freefall. I hope I’ve made myself clear. (as mud, probably!)

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