Hypersomnia and Me

Ok, first off a disclaimer: I’m writing this today as a therapeutic experiment, to see if writing gets me out of the super-complex funk I’m in right now. The reason(s) for my funk are many and exhausting. First off, the obvious: book anxiety. Not just the first book, which is officially published soon, but also the sequel, of which a draft should be ready to send to my publishers soon. For some bizarre reason I’ve decided to start the second draft before I’ve even finished the first. I don’t know. Secondly, job anxiety: that fabulous Arts Council grant I had last year? Well this year I’m flying solo. Which means that I really need to start earning money soon. Thirdly, and most irritatingly: my health, which features the delightful words ‘chronic’ and ‘incurable’.

It’s reason number three that I want to talk about today, because it’s the only thing I can’t do anything about. I can apply for jobs, and I can stay up until midnight on my book, but my health? My health is ridiculous.

The goods news is that I think I’ve figured out what’s wrong with me. I’ve had Idiopathic Hypersomnia for the last seven/eight years (it’s hard to ascertain how long I’ve had it, because it crept up on me rather slowly), with the new symptoms of high blood pressure and a chronic rapid heart rate coming in about a year and a half ago. Cardiology thought I had an endocrine problem, and endocrinology thought I had a neurological problem, and now I’m back to seeing the neurologist who I originally saw for my sleepiness. The experts have come full circle, and the one thing that everyone agrees upon is that there is definitely something wrong with me. Here’s what I think is happening: Idiopathic Hypersomnia is an incredibly rare disorder that hasn’t been researched too much. Because I’ve been living with it untreated for so long, I think the rest of my body is breaking down on me. You know how astronauts who spend months in space have all these problems because they’ve not had to work their bones and muscles for such a long time? I think I’ve got that. I think that my life style is so unbelievably sedentary that I’ve given myself a neurological heart condition. Have a look at the other features of my illness: exercise intolerance (it’s a thing!), extreme muscle weakness (especially in the legs), plus a hefty dose of anxiety too. All these things can be explained by me sleeping too much. Spending half my life in bed is destroying my body – who would have thought?!

So surely the answer is simple: GET OUT OF BED AND MOVE GODAMMIT.

Except that its nowhere near as easy as that. Firstly, there’s the chronic fatigue to deal with, and then there’s the fact that I am so ridiculously unfit that sometimes even a gentle walk to the bottom of my road is enough to do me in. It’s not easy. Then there’s the mental thing, the depression and the anxiety and all those other things that fly about your brain stopping you from doing stuff, even when you know that all that stuff is good for you.

In case you don’t know, this is what my life is like right now: you know how when you were young and spritely you used to go out on benders a few nights in a row, and then need a day of rest to catch up on your sleep? I need those kind of days twice a week, just for living a normal life. Twice a week I let myself get all the sleep I need, which usually results in me getting up after about 20 hours. Then I’m awake for a bit (but I’m not really awake. I’m groggy and ‘hungover’ and really no good to anyone) and then I go back to bed for another ten hours or so until the next morning. This is my life, twice a week. And it kind of allows me to live a normal life on the days in between. But often I’m still tired after a sleep day. My muscles are weak, and my blood pressure does something funny meaning I’m prone to faint. I’m what you would call ‘tired’ or ‘fatigued’ although to many people it looks a bit like laziness. I’m sure there’s a touch of laziness in there too, but after a 30-odd hour nap I’m pretty bummed out. I’d dare you not to be.

Until I got into this routine of voluntary hibernation, I used to try and live like a normal person. As in, I used to try and get up every day. And man, where those crazy times! After about a week, I’d start to experience the effects of sleep deprivation: irritation, moodiness, a mild temperature with other flu-like symptoms, and hallucinations (those were NOT FUN). To be honest, I haven’t tried to keep myself awake every day for a while. Partly this is down to not having a full time job, so I literally have the time to nap whenever I like, and partly is this down to the fact that it is really, really hard for me to stay awake. Sleep deprivation symptoms are horrific, and give me their own special form of depression and anxiety.

I’m in my particular funk right now because I recently found THIS article.

I was close to tears when I read it. I found it difficult to eat my dinner because my hands were shaking so much it was tricky holding a knife and fork. For the first time, I’d seen me in a popular news article. I wasn’t going out of my mind, there are others like me, and there might be some answers out there. So why am I blue now? Surely this is all a good thing? Well, because I’m not sure that the NHS covers the kind of treatment that I might need, because its still all so theoretical and expensive. I don’t even know if there are any doctors in the UK looking at this condition to this extent. I might be a lost cause, medicine wise.

But here’s the thing I’ve become convinced of: that if I could get to the bottom of my Idiopathic Hypersomnia and find a better way to manage it, then I can start getting better. I can lose weight, I can get fit, and I can solve all the other problems that are plaguing my body. I’m convinced that my hypersomnia is the key. And it drives me mad that I can’t do anything about it right now. My next appointment with my neurologist is in the summer. It’s hard not to feel depressed when you feel like your life is slipping away from you, that your body is decaying and getting worse, and that time is going by far too quickly.

Please don’t read this and feel sorry for me. Those of you that know me know that I’m a bubbly, extroverted thing who likes to be around people and be happy. For the most part, I am. I’m doing what I want to do, writing books, and I’m fortunate to be so close to my family. There are lots of you out there who are sympathetic, and that means a lot. I’m also connecting with other sufferers on Facebook, which is strangely wonderful. I don’t want to be embarrassed about my condition, and I don’t want to hide. Maybe sharing my experience will help somebody else, and I know that writing it all down like this definitely helps me cope with it all mentally.

If anyone has questions, I’d be more than happy to answer them, either below in the comments or over on twitter.

In the mean time, hugs and high fives guys!

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