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!


50 Days Until Publication! (1 day late)

Firstly, an apology. I wanted to write this post yesterday, but I slept through most of it (for those unaware, I suffer from Hypersomnia, which results in 20-30 hour sleep sessions).

Anyway – we’re at fifty days (minus one)!!! Things are getting pretty real now, so I thought I’d give you a little insight into the mind of an author with less than two months to go before her book is out…

Well, it’s pretty stressful. And what adds to this stress is that so few people understand why its stressful. “But you’ve written a book! You must be so excited!” and for a brief moment, it is exciting, because this is what I’ve always dreamed of. But then something in me plummets and twists and I just want to go away and hide forever. I get the same twist whenever I hear that someone has read the book. At first I’m like “YEY!” and then almost instantly I’m like “RUN AWAY RUN AWAY RUN AWAY DON’T LOOK ME IN THE EYEEESSS”.

Don't Look At Me Gif

I’ve been asked a lot lately about what its like to transition from an unpublished author to a published one, so here’s my advice to anyone who is going through it right now, or dreams of going through it some day: there is no transition. Anyone who thinks that getting a book deal will magically change you into someone with confidence and happiness – well I’m afraid that it doesn’t work like that. Yes, the process is validating, and its awesome to have some people tell you how talented you are etc etc. But if you’re hoping that all the mind-goblins will disappear upon signing your name on a contract, the sad news it is that they don’t. If anything, the mind goblins get greedier. You know that person you were yesterday, before the book deal? Well, you’re that same person today, and you’ll be that same person tomorrow. All your worries and insecurities will still be there, and they’ll get a whole new bunch of worries and insecurities for company. Like ‘can you meet your deadline?’ or ‘what if everybody hates it?’ Well, with fifty (minus one) days to go, I can safely say that the mind goblins are having a rollicking time right now, They keep poking me on the shoulder and then running away when I turn around, as mind goblins are prone to do.

I like using the X Factor as a metaphor for the publishing experience… so I’d say being at this stage is like singing in the live shows. I know I’m good enough to get to the live shows, and I’m pretty sure that I’m not the Wagner or Jedward joke act, but I’m still standing there, in front of an audience of millions and the judges, and it could all go wrong so very, very quickly.  What if I forget my words? What if I fall down the stairs? What if I aim for the high note and I miss it???

So there we go… fifty (minus one) days until Othergirl hits the shelves, and I’m a little bit of a nervous wreck. Fortunately I have plenty of things to distract me right now, including getting  a draft of my new novel ready to hand in to my publishers, because that isn’t stressful AT ALL*.

To those who have been lucky enough to get their hands on Othergirl already, I hope you enjoy, and to those yet to read, hopefully this Soon Horse will make you smile:

Soon Horse

Hugs and high fives guys!


*It’s totes stressful. Especially as I should have all this figured out by now? Surely???

An Open Letter to my Local Councillors on the Importance of Libraries:

Dear Councillors Hart, Gordon and Scannell,

My name is Nicole, and I am a lifelong Edgware resident. I write to you in the hope that you will consider my thoughts and feelings over the importance of libraries in our borough.

A bit about me: I am a children’s book author, and my first novel comes out with Andersen Press in April. I am also currently looking after the Save Barnet Libraries community on Facebook and Twitter.

I have been using Edgware Library for as long as I can remember. It is because of my passion for reading that I ended up doing a degree in English Literature, and a Masters in Creative Writing. My mother (also a lifelong Edgware resident who grew up near Broadfields) started taking me to the library as soon as I was able to read – if not before that, in order to encourage a love of reading and books. I fondly remember visiting the library at least once a week throughout my childhood, and borrowing books such as Alice in Wonderland, Peter Pan and 101 Dalmatians. I borrowed all the Malory Towers books by Enid Blyton, and then as I got older, I ventured to the ‘adult’ side and started reading everything I could find on the science fiction shelf.

I’ll admit, I didn’t use the library as often throughout the later parts of my education. I found my school library adequate, and I was lucky to have some quiet study space at home when I was revising for my GCSEs and A Levels. But I always knew it was there, waiting for me, and in recent years I have found the library invaluable as my insatiable need for books continues.

Maybe libraries aren’t used in the same way today as they used to be. Certainly there is wider access to books and information via the internet and handheld e-readers. So here is what I see today whenever I stop by Edgware Library: I see mothers and toddlers socialising and having fun with reading groups and playtime, I see students in the study space (which is always PACKED) and I see less fortunate members of our community sitting reading papers, researching or using the computers. They may not be borrowing books as much (I’d argue that the quality of the stock isn’t as good as it used to be) but if anything the building is far busier than I remember it being when I visited as a child.

The library is a crucial public space. It is a place of democracy, of learning, and of information. If you have a question about anything, I can guarantee that the library will have an answer. Even today, you use the library space for your surgeries – where else would you hold them otherwise? What other free public space is there? If anything, I think we take our libraries for granted. Many people don’t realise how valuable they are for communities. They have become complacent, trusting that their libraries will aways be there. I wonder what will happen to our community when our libraries are gone… not necessarily straight away, but certainly in the future. What are the long term effects of not having a fully funded library in the community? Have you looked at that? Have you even considered it?

I urge you to consider this as you decide upon the fate of our library service in Barnet. The current propositions in the public consultation are hideous. Choosing one of the three options is currently a LOSE LOSE LOSE scenario. It seems that you are absolutely determined to decimate our service and ruin Barnet for the future. 540 sq ft is not adequate amount of space for a quality range of books, computer and technological services, chairs in which to sit and read, and a space for families and children to meet, play and learn. We want librarians and other specialists to be available whenever the library is open, not computers that can go wrong and make mistakes.

Please, think about the world you want your children and their children to grow up in. I agree that libraries need to evolve with the changing of our times and culture, but closing and shrinking them is not the answer. If anything, our libraries need better funding: for new books, for better computer services and for schemes and ideas that could help shape and educate the local population for the better.

Please note, that this is an open letter which will be appearing on my website nicoleburstein.com

I look forward to your response,

Yours sincerely,

Nicole Burstein