Sunday, 15 February 2015

Slave to the Rhythm

I have an urge to write. This isn’t something I’m used to. Even when I was doing things I truly enjoyed – my dissertation, recent court stuff – I didn’t have an urge to get things down on paper for their own sake; it was to complete the work. Thus urge, though, is to write about my feelings and to toss it onto the Internet with all the significance of pissing in a river. This is for it’s own sake, and I basically have no idea what I’m doing. Between that, and the opiates, and the very tiredness… Don’t expect neatness and conciseness! I’m not even sure what I want to say yet.

For those 3 people living under a particularly large rock, I was the lucky recipient of a neurological sleep/circadian rhythm disorder called (amongst its other names…) ‘Non-24-Hour Sleep-Wake Disorder’. That name is unwieldy, so we just call it “N24”. This link is a decent lay introduction, while this link is a more technical, medical exploration. I was diagnosed in the 09/10 academic year, have been symptomatic in this form since I was 16 (now 27). There are even hints that something was going on from birth onwards. There’s increasing evidence that there’s some genetic weirdness going on, but no clear indication of causes and treatments are, to be generous, ‘ineffective’ (no, behaviour doesn’t cause it. Be gone.). It was there from the beginning, and it’s here to stay.

It’s a part of me, and that’s the first thing bothering me. My life feels perfectly natural – it doesn’t feel like a perpetual state of dysfunction and disease. Left to my own devices, you couldn’t tell the difference between me and a ‘chronotypical’ person (one with a ‘standard’ 24h entrained circadian rhythm) 50% of the time, and in the other 50% of the time, I’m completely fine too. Lonely, perhaps, but that’s a consequence, not a symptom. Your lives are as confusing to me as mine is to you; you don’t understand a 26 hour day, and I don’t know how you cope with 24. My circadian rhythm feels as legitimate and immutable as my sexuality does. The treatment is to make us ‘normal’, so that we can ‘function in society’ when the truth is that fundamental changes to how we, as a society, ‘do’ time could help a lot of people. But that’s inconvenient.

I feel a sense of shame saying that. It could be that I know I’m talking out of my arse, but it puts me into a bit of a conflict. On the one hand, I’m saying that I’m actually healthy and this is just ‘variation’ rather than pathology, but on the other hand I waltz around talking about being disabled and claiming disability benefits. N24 is, as a friend once put it, the “perfect social-model disability”. My disability is in the interaction of my body with the rules and structure of society, not in my body itself. I logically know this – just the other day, a friend described the effect my condition has on me and it was quite heartbreaking to read – but I still feel like an imposter. All the friends I’ve made through disability stuff in the last few years probably deserve better than me leeching off their battles and successes, and everyone else struggling through the interminable hell of circadian rhythm disorders deserves better than me prancing around going “hohoho we’re just quirky”. Again, I logically know this isn’t the case, but #feelings yo.

I find it very difficult to express the problems N24 causes. It’s simply too far out the realm of normal human experience to be able to convey to you, and that totally sucks. My friend (the one above) wrote a letter in support of a benefits application because I just couldn’t express the effects. He’s been around since the start, so he’s seen it first hand. If you spend time with me, maybe you’ll see the effects too. He mentioned having to stop me walking absent-mindedly into oncoming traffic – my attention span just.. didn’t exist enough to know that there were cars. Those aren’t the effects that are on my mind right now though. They can be avoided if society doesn’t get in my way.

I’m a bad friend, and I… resent myself for it. I’m a complete flake and I give you the most pathetic excuses. “Hey, I’m sorry I can’t come to your wedding; I’ll be asleep!” “Sorry I didn’t come to [my uncle’s] funeral, I was too tired”. Both of those are things that have happened. I can’t even schedule a multiplayer game because I don’t know if I’ll be awake/in any decent state. Modafinil can give me an extra hour or two in an emergency, but that’s all. It can’t turn night into day.

Disabled people use something they call ‘spoons’ to represent their difficulties and efforts. I talk about my row of dominoes. Each domino represents a time-unit of ‘decent health’, physical and psychological. One wrong move, a sudden gust of wind and they tumble out of control and there might not be someone there to stop me walking in front of cars. The only way to save the row is to run ahead and kick some out of the way – a recovery period in which I am basically incapable of doing anything, sometimes even getting out of bed. Even simple things – a 10 minute GP appointment scheduled in my night – set the dominoes wobbling and I have no choice but to flick a few out of the way, before and after the event. A GP appointment can take days of prep and recovery, even if that’s just making sure I’ve got nothing else planned for those days.

That’s why I’m a bad friend. Your wedding is wobbling my dominoes and I know the wind is due to pick up. Your birthday party was in the chunk I had to kick away to keep myself functioning.  Maybe you just needed confirmation too far in advance; sometimes the wind just does whatever it wants. Maybe it was just too expensive. All I ask is that you know I'm trying and that whatever time we do get to spend together is truly precious to me.

The nocturnal periods of N24 are bad – someone once said that the loneliness is the worst thing of all. I disagree; the worst part for me is knowing that they will always come again. As night follows day; nocturnal follows diurnal. I get annoyed at people who think they have much control over when and how they sleep; we’re all slaves to our rhythm, just mine’s a little more obvious.