How Disability Divorced Me from Sleep

I decided to start writing about disability and me. I’ve had an interesting journey and have had an experience you should make a movie about. Well, I think you should. I think everyone should pay attention to me but I’m aware that’s a thought common to my generation. For context, you should know that I have a rare condition called Diaphyseal Aclasis (in the UK), and hereditary multiple exotoses everywhere else. I had someone explain it to me like NF2 for bones. I have bony lumps all over my skeleton and they cause me pain amongst other things.

I’ll start from today and as I keep blogging I’ll go backwards and forwards through my life, timejumping around key moments that shaped me.

It’s always been a difficult relationship

It’s no news to anyone that’s been my facebook since 2009 that I have insomnia. My record was 4 days without any sleep at all (96hrs), and I’ve been teaching myself how to sleep ever since. Last night I had a revelation. As long as I have nerves I’ll probably always have insomnia, because that moment when you shut off your mind and drift off into nothingness — that moment doesn’t exist for me. Last night I tried it. I ditched my usual going to sleep methods and tried my other half’s advice:

Just lie really still for goodness sake! That’s how you sleep! You just lie still and you don’t move — why do you fidget so much? I don’t understand. All you need to do is sleep; I’ve never met someone who finds this concept as difficult as you do!

I’m paraphrasing. But, I did it. I ignored the temptation to jiggle my joints or shake as I usually do and felt it. My right ankle. Both knees. My hips. My right hand. My right shoulder. They were all giving me varying amounts of pain and I get through it apparently by having a busy mind. I had absolutely no idea I was in this amount of pain until I tried to sleep. The information I had spent just flat out ignoring throughout the day rushed to the fore-front and now that I was aware of the pain, all I wanted was for it to go away. I find it so difficult to fall asleep if I’m in pain, particularly if all I have to get to sleep is darkness. That allows me to focus on what my joints are feeling and what my body is doing. Quite frankly, if I spent my life paying attention to what my body does I’d never get anything done.

I keep busy, I keep myself busy. I have a really low boredom threshold because the minute my activities stop engaging my I become very aware of exactly which parts of my body are in ridiculous pain and start panicking about where the bloody hell I’ve left medication this time. Distraction is one of the best pain relievers I’ve got right now because the minute I go back to using painkillers as my primary medication I will have to stop working and stop volunteering.

Why don’t you stop working, Hannah? Surely it would be a lot easier for you?

Yes, you’re right. It would be. Unfortunately we live under a Conservative Government and I ‘slipped through the cracks’ healthcare-wise. The main technique for managing my condition (without surgery) is physiotherapy. My father is a damn good physiotherapist, with over thirty five years in the NHS and is still practising community based care with a specialism in pain relief and elderly care. At thirteen my consultant at the hospital looked at me, looked at my Dad and looked at me again. At this point my father and the consultant worked down the corridor from each other. It was a bit of a formality to be honest. Wisely, this doctor suggested that instead of prescribing me hospital based treatment, putting me on a waiting list, needing time off school, and incurring increased travel costs (that disabled people can’t afford anyway), how about I get treatment on demand from my father? Good? Great. Save the NHS some time as well, why not?

I’ll tell you why not. From the age of 13 until18 when I needed surgical intervention, there are no medical records of my treatment because we handled it at home. So now when I go to the government asking for the benefits I should have, they effectively tell me to take my Oliver Twist looking hands and shove them elsewhere. If there is anyone else in the UK in this situation and wondering what to do, for goodness sake have both. Hospital treatment and at home. We live in a country that removes your personal agency and requires someone else to acknowledge your pain and needs before you have the right to be considered for the basic support you need to live as a human.

I don’t bemoan this consultant for the decision at all, it was the right thing. Who knew that collectively we’d vote in a government that would systematically remove my rights piece by piece? Years later, he referred me for my surgery at 18 and then when I was about 23, he remembered me, remembered my name, my condition, the treatment options he recommended and asked how I was. He wasn’t even my doctor at the time, but he was a considerate man. There are some wonderful people in the NHS and it’s a disgrace that it’s being dismantled piece by piece through underfunding and privatisation.

How do you sleep then?

Since about 2010, I’ve used the BBC to help me sleep at night. I’d give those people my licence fee and more because without them I wouldn’t be functioning as a human being. Sandi Toksvig, Nicholas Parsons, John Humphries, Jack Dee, Spotify and Radio4 Comedy (zolpidem, red label wine, and gentlemen callers) were essential to me getting to sleep. I’ve used many techniques to try and fall asleep in my time. Push-ups to tire me out, reading the thickest art history textbook I can find (I just ended up liking Byzantine art), and watching as many movies as possible. That one didn’t work at all. I just stayed up watching films. I can’t believe I didn’t predict that.

I moved onto audio stimulation alone instead of audio visual. I first tried it with a very cynical stance, thinking that I could bore myself to sleep with Radio 4. It didn’t work, by the way. I wasn’t bored. BBC Radio 4 is legit fantastic. Turns out I enjoy that blasted station so much I’d actually be up listening to it well past God Save the Queen and the World Service would be my bedfellow. I kept the noise in the background because if my mind was focused on something else, I wouldn’t notice the pain.
I should mention here that I also have neuropathic pain, a lovely side effect of a 2010 operation. If you haven’t had it, short version is you feel like you are on fire. As a disability studies major, it takes a lot for me to say I ‘suffer’ from something, but this condition was so awful it was an accurate description. My right arm was so sensitive I couldn’t wear clothes. Do you have any idea what it is like going around campus in a tank top during Winter? People thought I was in permanent Lara Croft fancy dress. But more importantly, do you know how difficult it is to sleep without letting anything touch the right side of your body? A feather could fall on my arm and it would feel like I was violated by a Ghostbuster holding a flamethrower. I still have to limit my typing to ensure I don’t aggravate it and no longer paint or play the piano.

I’ve learnt through the years that there is no comfortable standing, sitting or sleeping position for me. Eventually, they will all hurt. Sometimes it will take thirty minutes and sometimes it will take three. This leads to me being in pain in my sleep. If I don’t wake up because of the pain, then I’ll have a light sleep through it. Sleeping and being in pain is a very weird sensation. I can’t describe it too well because I don’t know if I dream, I just wake up exhausted and in pain. It’s like my mind has switched off but my body has been awake the entire night.

I like to joke that I haven’t had a good night’s sleep since 2007. It’s mostly accurate. There were about three days in 2010 when I was off my face on morphine due to surgery, it was a great time. Never write an essay on morphine, by the way. Worst grade I’ve gotten in my life.
I’ve had people without medical degrees suggest taking painkillers at night and for everyone reading this, I’ll say explain why this is no longer an option for me — the only ones strong enough cause insomnia. You get stuck in a really bloody annoying catch 22 right there.

The good news is, I used to get loads done whilst I couldn’t sleep. I had the productivity of a small office of salesworkers during the dark hours of the night, but it’s left me with some unrealistic expectations of how life is supposed to be. I can’t plan projects, my diary or manage my time to the standard I hold myself to because I never know when I’ll need sleep or how long I’ll need it for. I think that I can do everything I used to do on two hours sleep, but the reality is I’ve gotten older now and my body can’t do as much. That’s a huge thing to come to terms with, especially when I compare my sister’s ability to do housework to mine. What takes her one hour would take me the entire day (with power naps in between). I’m not as strong as I used to be. I have difficulty getting up for work in the mornings because I’ve learnt that if I wake up with pain that’s about a 7 on the scale, there is no point getting up then because it will not subside. It’s better to wait it out. Problem is, when you’re meant to start work at 9am and your body isn’t ready until 12.30pm, it can be very difficult. I’ve had a lot of missed meetings this year and getting the balance right can be difficult.

I’ve now trained myself to sleep every single night. It can take me anything from half an hour to three or four hours to get to sleep but I can manage it. Sometimes I even sleep through the night. I sound like a new parent finally thrilled that their newborn is getting a sleep pattern but imagine being stuck in that stage for the rest of your life. That’s how I feel about sleep, and I bloody love sleep. In pain? Sleep it off. Drunk? Sleep it off. Had a bad day? Sleep it off.

I think I wrote this whole blog because I got quite tired of having to explain what mornings are like to my line manager without the support of PIP, DLA or Access to Work. I did ask for flex hours because some mornings my body doesn’t work — HR said if I’m not ready to work by the start of the working day, I’m not fit for work and shouldn’t come in. Tell that sh*t to ATOS, Capita or the DWP. I think I wrote this blog mainly because, I’m tired.

I’m tired of not getting any sleep and I’m really tired of being excluded from the support I need and living in a world where the rhetoric demonises me for the fact my bones can’t get their act together. I like to end blogs with lessons you can take away but I won’t be doing it in this series. The whole point of this blog is to get you to understand my experience. You don’t need to take away a key soundbite media ready message. You just need to listen.