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.

Tidying

I’m attempting to try and tidy up again. In some senses I’m a bit of a dichotomy in that I’ve never been a neat person, but I can’t stand dirt. To me though they’re not the same thing at all. I detest a dirty plate, but I can happily (or at least, dispassionately) tune out a stack of clean laundry which is cluttering up a perfectly good chair. I’m almost certainly the untidiest person I know.

It doesn’t help that I seem to have hoarder genes – keeping pieces of wire, empty boxes, jars and so on “in case they come in handy”. Very occasionally they do (which reinforces the behaviour and vindicates my storing them in the first place!) but mostly they just take up a lot of space.

While walking through my dining-room (a room which many of my friends would be surprised is actually intended to be a dining-room, or at least somewhere with flat surfaces and chairs in it) I had one of those overwhelming feelings of “I need to DO something about this” but I don’t really know where to start.

I need to hoover and mop the floor.
I need to get rid of empty boxes.
I need to move the clean clothes from their “temporary” resting place on the couch.

The problem is that I can’t fix most of these things right now, because my N24 is at a part of the cycle where I’m awake in the middle of the night and I can’t be banging about moving couches, hoovering up and clattering about in wardrobes or I’ll wake the neighbours.

When I eventually roll back around to daytimes, there’s a million daytime-things that need to be done like shopping, hoovering, calling utility companies or whatever – they say we live in a 24-hour world, but that’s not really true. For instance, tonight is a Sunday – the 24-hour supermarket is closed because of Sunday Trading laws.
In any case, night-time shopping at the 24-hour supermarket isn’t even an option during the rest of the week because, although it’s within walking distance, I can’t carry all the shopping back. Nobody else is awake to help me carry it, or to give me a lift. Buses don’t run at this time of night and I can’t afford a car or the insurace for one, nor can I afford taxis, so shopping must wait until the daytime when nearby shops are open.

Online shopping isn’t even an option – you have to book a delivery window and my sleep pattern isn’t predictable enough that I can say I’ll have woken up in time (or been able to stay awake long enough) to be available to take the delivery.

The whole thing frustrates me so much. I hate that the N24 affects my life to such an extent – even when I go out of my way to avoid thinking about it, it manages to creep in somewhere, even if it’s not in the form of screwing my life up at that particular moment. As an example, I was listening to a podcast the other night  when they suddenly sidetracked into a discussion on sleep disorders. It seems silly but it just completely jolted me from being relaxed to a sort of sinking feeling, like the universe won’t allow me to forget about the illness. That’s silly I know – it’s just there in the back of my mind and because it’s relevant it jumps out at me, whether I want it to or not.

I’m hoping to attend a support group tomorrow for sufferers of neuroligcal disorders. I say “tomorow” – it’s what would be “tomorrow” for a normal person; for me, it will be the equivalent of about 9pm. I’ll have to play it by ear as I might be too tired to make the hour-long journey there, attend, and then the hour-long journey back. It’ll also depend on how my stomach is – I might not be able to sit on a bus for that long without urgently needing the loo.

I would like to go to the group. I first found out about it over a year ago, but several factors have put the stoppers on me actually going. They only meet on the first Monday of each month, and between the N24 and it’s knock-on symptoms (e.g. the stomach problems), plus the situation of never having much money, I simply haven’t been able to go. That might not make any sense the way I’ve written it – I’ll try and rephrase it.
Bear in mind that my sleep cycle drifts daily, and in addition, that it’s rather unpredictable.
In order to attend the group, I need to be awake at the correct time on a very particular day. This has to be a day when I’m not only awake, but well enough to travel. I also need to have enough money to get there. When you combine these, you find that there are very, very few times where everything lines up just right.

I don’t know if I’d fit in there anyway. From what I’ve been told, most of the attendees have things like Epilepsy, Multiple Sclerosis, Parkinsons, etc.
I’m kind of scared that if I go, I’ll be too “healthy looking”. N24 doesn’t really have obvious visible symptoms unless you know what to look for – that’s one of the reasons it took decades for me to be diagnosed and why it’s also referred to as an “invisible disability”.
I’m also sort of dreading having to explain N24 – since I was diagnosed, I’ve had to try and explain it to virtually everybody I know, not to mention to people I’ve just been introduced to, and while some people get the general idea, nobody really understands it.

It gets kind of tiring attempting to describe it in a way that people can ‘get’, all the while knowing that in their head they’re thinking “I wonder if he’s tried Nytol/warm milk”, etc. and in many cases being given “helpful” advice about how to sleep “better”. The closest analogy I can think of is that it would be like somebody telling a person whose legs are paralysed that if they practise yoga then that’ll certainly help them to walk again. It doesn’t work like that. It’s a neural wiring problem – a disability.

That’s another thing, that word “disability” – I’m still getting my head around the fact that N24 is a bona fide disability. It’s massively affected my life in a multitude of very negative ways, not only for the big things like education and working, but on smaller scales too like not being able to do the housework. I know it sounds trite but there it is.

The frustration stems, I think, from not knowing what to do about any of it. After I was diagnosed, the neurologists tried the few treatments available, but after these treatments failed to have any effect the doctors and neuroscientists essentially shrugged their shoulders and told me I was on my own. Nobody knows what to do. Why aren’t they doing more research? I don’t want to be like this for the rest of my life.

At present however, there is nothing I can do about it so I just have to deal with it. You’d think there would be some sort of counselling available, you know, “How to adjust to the fact that you have a rare, untreatable, incurable illness which has wrecked your life” but none has been offered. Maybe I’ll ask my GP next time I manage to see him.

On the plus side, I have been able to find internet support groups for sufferers of the condition and related circadian disorders, and these have been a godsend. It’s wonderful to be able to actually relate to people – people who have been through the same things I have, who understand the way this horrible neurological disorder gets into the deepest nooks and crannies of what used to be your life.

At times it’s also a little disheartening too, because you always hope that someone is going to hit on a method of controlling the N24 that works. Sometimes they find something that works for them, but often it only works for a few months, and in any case there’s never a silver bullet. You also see people posting who have either only just developed the disorder, or only just found out that it exists, and you know what a struggle they have ahead of them, particularly because not everybody is fortunate enough to have a family who supports them like I have.

I do try not to get down my situation, I really do. It doesn’t always sound like it, I know, but I’m actually in a relatively good mood tonight. While I haven’t been able to do the tidying I wanted to do, I have been able to do some quiet things like defrost the freezer.

Also, for the last year or so I’ve been making a Herculean effort to THROW UNNEEDED THINGS OUT straight away – even if they might be somehow useful at some unknown time in the future.

The other type of clutter I’ve been collecting for years is Sentimental Things – none of these things have monetary value, but they either belonged to somebody close to me or remind me of some person, time or place.  These types of items can range from (at the more understandable end of the spectrum) things like a Christmas card from a deceased relative or friend, to (at the craaaaaaaaazy! end of things) 20-year-old bus tickets from a time when I went to a concert or something. I’ve been making a point of eliminating the less sane items – in particular things like those bus tickets, on which I never even wrote what event I was going to, nor who with, and are now, due to the printed ink fading with age, simply thin, blank pieces of paper.

This has meant that the rate of cluttering has decreased enormously, though there is still a lot to do.

The freezer is well on its way to being defrosted now. Due to a crack, the top couple of drawers have been completely iced up for a very long time and have likely got food in them which has been frozen for years. I hate to waste anything, especially food – I went to a Catholic school where not liking things like Manchester Tart or semolina would result in admonishments like “Well, think of All The Starving Children in Africa! They don’t have ANY food, and here’s you not wanting yours.” which has resulted in a guilt-complex I’ve never quite been able to shake – however this stuff in the freezer has likely long had its cellular structure damaged beyond edibility by gigantic ice-crystals, so it’ll have to go.

The binmen arrive very early tomorrow (well, today, that is – in a few hours), but this means that I’m going to have to creep about outside in the early hours to put the binbags in the bin without making any noise and waking the neighbours – if I don’t get the bags in before the binmen come, I’ll have to wait two weeks for the next collection which means I’ll have to continue to store the food in the freezer, lest it rot.
This is bad planning on my part more than anything – I couldn’t defrost the freezer earlier in the week for the same reason of not wanting rotting food hanging about, but I could have done it yesterday, and should have.

These blog posts always end up being longer than I intend. I suppose it’s because I don’t really have any idea in mind when I start writing, but just allow one topic to flow to another. I think I quite like it that way, rather than having some self-enforced rigidity. If I sat down and thought “In this post, I may only write about my cactus!” I doubt much would get written at all.

I think too that I’m finding it somewhat therapeutic to write. It’s sort of nice not knowing what I’ll write about, nor who will read it (if anybody). It’s not being written for anyone else, just as an outlet. It’s public so that if anybody else wants to, they can read it.

I seem to be having a “cloudy headed day”. These are days (or nights) when I don’t seem to be firing on all cylinders. It’s related to my sleep cycle, but I haven’t really been able to pin it down. This is one of those things I’d very much like some help with from the doctors – if I could identify the reason it happens, I might be able to mitigate it. I suppose the same goes for the whole of the N24 though. If I knew what made that happen, maybe there’d be a way to undo it?

When I’m “cloudy” like this, I don’t seem to have as good a grasp of how long things take, tend to do badly with things like crosswords and can be clumsy. It’ll clear up in a few hours most likely. From what I can tell, it seems to be because while my sleep-wake cycle is mistimed, other intrinsic circadian rhythms are also mistimed but to different extents. That’s one of the reasons my stomach can sometimes be so bad, because the digestion system thinks it’s one time of day (or night), while my “Is it the right time to be awake?” system thinks it’s another, and neither of them conform to the actual time. I get it with body temperature too. Sometimes I’ll have an hour or so where I feel like I’m burning up or shivering, even though the ambient temperature is perfectly fine. Just one of those things.

Bored

I am so very bored. It’s not that I don’t have anything to do, I have plenty of books to read, games to play and Netflix to watch. I can program in several languages and have a number of projects I could turn my hand to. I have crosswords I could try and occupy myself with, paper & pencils to practise drawing & sketching, and a set of cheap acrylics to paint with. There are somewhere around about a thousand million websites I could visit.

The problem is more that I don’t want to do any of those things. First World Problems, right?

What I want to do is to go out and see my friends, but that’s not possible because it’s a quarter-to-four in the morning and in any case, I don’t have any money. I am craving face-to-face social interaction.

I think the reason I’m feeling so at sea at the moment is that I recently visited friends in another city. I had a great time and enjoyed socialising so much, and coming back home to the quiet little town where I live has had a bit of an impact on me. It feels a little like when you wake up from a great dream only for it to drift out of your grasp – all you’re left with is a vague feeling of loss.

This is a feeling which I find myself constantly fighting. The sense of loss isn’t for the short time I had away from home, but of a life I no longer have.

In my teens I began to have trouble getting to sleep at night. I began to find that I simply could not feel tired until later in the night. At first it wasn’t a huge problem, but year-by-year, the time at which I would finally be able to nod off got later and later. Likewise, so did the time at which I needed to wake up.

By the time I was around 15, I was finding it impossible to sleep before the early hours of the morning, yet still had to get up for school, meaning I was only getting a few hours of sleep each night. I was so tired through most of my secondary education. Despite endless detentions for being unpunctual (or absent in some cases) I managed to scrape through my GCSEs, developed depression, and later scraped through my A-Levels (again in constant trouble for timekeeping), but the notions I had of going to University had to be put on hold. I was simply exhausted, in part from not getting enough sleep when I could get to sleep at night, and in part because at the other times I would simply force myself to stay awake in order not to oversleep the next day.

The problems continued throughout my adult life, getting worse and worse. As I reached my 20s, the rate at which my “sleep time” was moving around the clock kept increasing. I was repeatedly fired from jobs for not being punctual. Doctors were at a loss to explain what was happening, putting it down to stress & depression and medicating accordingly. I felt so alone. Was it all in my head? Was I just not trying hard enough like my teachers at school had said? Deep down, I was sure something really was wrong, but I didn’t know what it was or how to explain it. It felt like there was some skill – that of falling asleep at the Right Time – which everybody else in the world had somehow learnt, while I had missed it.

I couldn’t understand how I could feel sleepy at a certain time one night, but not hold on to it for more than a few days. No matter what I did, it kept escaping from me.

In my late 20s a friend and colleague who worked in a pulmonary function lab was at a conference. I should explain that “pulmonary function” is the department where you go to have your heart/lungs/breathing tested. Many people go to these or similar labs to be tested for sleep apnœa, which is a condition where you can stop breathing in your sleep. Often, this won’t actually wake the sufferer, however it is quite serious because it will cause the body to quickly shift from a deeper mode of sleep to a shallower one, so that the paralysis of R.E.M. sleep can be lifted, and the body can attend to whatever is causing the breathing problem. This doesn’t sound like a big deal, but it is, because R.E.M. sleep – the deepest known level of sleep – is essential to a person’s health.

I hadn’t actually been tested for sleep apnœa – I almost was, at 18, however I overslept for the appointment and the clinic refused to rebook me as, by oversleeping, I apparently wasn’t taking it seriously enough. In any case, the symptoms didn’t really match – when I was able to sleep, I slept soundly and uninterrupted.

How does my colleague tie into this then? At the conference she was attending, she happened to hear of a condition which sounded a lot like the strange, shifting sleep pattern I’d described. Thinking it might be of interest, she passed it along to me and I passed it to my GP.

At 30, I was eventually diagnosed with a neurological condition called Non-24-hour Sleep/Wake Phase Disorder (N24 for short). While it’s fairly common in people who are completely blind (those who do not perceive any light at all), in the fully-sighted it’s incredibly rare.

Unfortunately, there are very few treatments available for it and of the few which are, many sufferers do not respond to them. I was one of those unlucky ones.

Eventually I had to effectively retire from work on medical grounds – over my working life I’d tried every form of working pattern available but was unable to fit into the patterns they needed. I was at the point where it was physically damaging me to try any more, the decades of sleep deficit taking their toll with immune-system problems, regular migraines, memory lapses and myriad other effects.

I had to apply for “benefits” – Employement and Support Allowance – which grants me a few hundred pounds a month to attempt to live off. This isn’t life, it’s existence. I don’t know why they call them benefits. Who’s benefiting? I paid into the system for years and what do I have now? The choice between heat, light and food.

So here I am, several years later. I’m awake at this stupid time of the morning because this is, currently, the middle of my afternoon. I’m moving into a particularly annoying part of my forever-roaming sleep cycle at moment, where I wake late at night and fall asleep quite early in the day.

It’s a part of the cycle where I have a lot of time with my own thoughts – I don’t get to physically see or speak to anybody, and even social media is quiet. The most recent posts are from people having a great time on their nights out (it being the weekend – something I hadn’t even realised until I saw the posts).
Don’t get me wrong, I don’t begrudge them having a fantastic time – I just wish I able to join them.

I miss the life I used to have, where I would be able to socialise at least once a week or so. Even a couple of times a month would be a godsend, but between not having enough money and not being awake at the right time, or being very ill when I am awake, it doesn’t happen. In June, shortly before my trip away, somebody asked me if I’d been up to anything recently to which I genuinely replied “Oh! I went for a drink in February!” – I don’t know whether to laugh or cry. It’s better to laugh I suppose or else it all gets on top of you.

I don’t really know how to describe living with N24 – when I try, it always comes out sounding so horribly depressing. I think the closest analogy I’ve made is when I described it once in a support group as akin to being snatched from the Earth and placed in a slightly different orbit; because you’re not quite in sync, there are parts where you’re completely isolated from the world, followed by parts where you can see everbody else but not interact, and very, very occasionally, you get these fleeting moments of contact before you’re snatched away again. You aren’t even in the same ‘oribt’ as other N24 sufferers – each is in their own, isolated, mis-synchronised holding cell.

Although I very much enjoyed seeing my friends and being part of the world again for a short time, a piece of me was dreading that which often follows – that sense of loss I wrote of. It’s so hard not to get maudlin about it which is why I need the distractions I mentioned in the very first paragraph, but they don’t always do the trick. Sometimes what I need to distract me are people. Conversation.

I think I’m writing all this here because I just need to get it out. I don’t write this sort of thing on Facebook, because it’s full of family and friends and I don’t want to bring their mood down. People have enough of their own worries and problems without having to read about mine. If I write it here instead, then if people want to read it, they know where to find it. It’s like when someone asks how you are, if things are good you say “I’m good thanks!” and if things are awful you say “Not too bad, could be better!” rather than “I feel disconnected from the world and for the last 3 days every time I’ve been to the toilet, it’s been blood – nothing serious I’m sure – but I can’t get to the doctor, and I’ve been having awful headaches, might be something to do with my teeth but I can’t get to the dentist. It’s pretty bad overall, really.

I don’t think people realise how serious the N24 actually is. By its very nature, people only ever see me when I’m synched up to the rest of the world, and at those times the other health problems the N24 brings tend not to be as pronounced.

In any case, I don’t intend for this blog to be all about problems. It’s just somewhere to jot down my thoughts. That’s all it ever really has been, despite the fact that for many years it’s not even been up and running. Maybe this time I’ll keep it going.

Rambling about things