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.