This is one of several blogs I’ve been writing in my head for months now. But I feel it is finally time to fine-tune and post it for all the world to see.
As memes and graphic tees have been reminding us for years, there are three things that humans are naturally built to do: eat, sleep and repeat. However, the second action on that list simply doesn’t come naturally to me at all. Sleep is not my friend. And this appears to be confusing to other people.
However, not having a good relationship with sleep, as discussed on my old blog, is ordinary to me. It’s been bumpy since the day I was born. As my mum excited exclaimed in my baby-book, it took over nine months for me to sleep through the night. At that age, I was almost walking but sleep just didn’t come naturally to me.
Why can’t I sleep?
My lack of sleep is evidently due to my epilepsy, at least partially. Even if I’m not having seizures, there’s constantly irregular activity in my brain. This means my rest is always being disturbed. Having ASD also means it’s much harder for me to ‘switch off’, my mind never stops over-thinking meaning it’s continually being stimulated. I literally rely on my medication to force me into sleep mode but it takes a lot of effort to consume the pills at all.
I genuinely have an irrational fear of sleep. This is understandable seeing as I’ve had nocturnal seizures all my life, however, when you weigh in the control I’ve recently gained of said seizures, the fear becomes illogical. If I’ve been feeling even a tiny bit uneasy during the day, I become certain that I’m going to have loads of seizures or will simply never wake up.
It seems to be getting harder to battle this anxiety as things continue to improve. One thing I’ve not really discussed in blog form is the fact that the control VNS gives me also adds additional anxiety. It is doing such a good job that I’m never truly sure whether or not I’ve had a seizure. All I know for sure is, I don’t want to relapse into the position I was in 18 months ago and in my mind, sleep is a direct route towards that. I’d much rather be unproductive due to tiredness than have an inability to function at all because of seizures. However, this isn’t even my main issue.
During the day I’m able to distract myself from most of my stress, but as soon as I en†er snooze mode, all the feelings and emotions I’ve been suppressing resurface. I’m trapped in a world of stress and anxiety and I have no way to escape. At the start of the summer, my consultant actually asked me if I have vivid dreams, I had to quickly make the decision whether or not to tell her, yes and you’re in them every night.
All my dreams seem to take place in the same ‘universe’. Since switching pills I’ve noticed I remember them less, but my sweat smothered body always confirms I’ve had them. Sometimes they take place in a merged uni/college/school/hospital. At times in an airport/shopping centre. And quite often at the moment, in an obstacle course/video game of which completion is a matter of life or death. At least one teacher from school appears every night and as already mentioned, so too does a doctor.
One recurring dream I also have, involves me driving a car and being unable to control it. And another which appears to be out of sync with all others yet has a story arc of its own, involves me being backstage at some kind of theatre. I meet many actors and David Tennant is now so fed up with me approaching him, that he always makes the first move in order to get the altercation over and done with as quickly as possible. I mean that’s literally my worst nightmare, David Tennant hates me!
On top of all this, going to sleep means I have to accept the day has ended. And when I wake-up, I’ll have to face another one. I have to acknowledge that I’ve not necessarily achieved what I wanted to do and I may face the same upset tomorrow. When I’m really low this burdens me far more. If I don’t have a reason to wake up, I don’t have a reason to go to sleep.
Of course, COVID has not helped this situation. My body clock means on a normal day I sleep between 3 and 11 am. And in 25 years, I’ve never woken up actually feeling rested. If I’m dressed before lunchtime it’s genuinely an achievement. There’s literally nothing for me to get up for at the moment. Everything I do can be done from my bed and even once I’m up, that’s normally where I spend most of my day.
When I was at uni I was able to get up for 9 am classes. I built structure into my life and actually lived it. But since graduating two years ago, I no longer have that obligation or even motivation. I need a reason a rebuild it and avoiding being yelled at by disappointed parents just isn’t quite enough. I need aims that I can actually believe in.
I know my sleep pattern is something I need to sort out. In 2016, 2017 and 2018 I made ‘fixing my body-clock’ one of my New Year’s resolutions. In 2019 I gave up trying and this year made no plans at all. But it’s not an easy thing to do. I mean, I can’t dissipate my dreams or stop seizures.
I talk to my grandma on the phone every night before ‘bed’. We always promise each other we’ll try and get an ‘early night’. And even though that conversation always ends with me yawning and my body beginning to shut down, I never fulfil my end of the deal.
I honestly feel like all the nocturnal trauma I’ve experienced has accumulated into a giant mental wall. As soon as it’s time to ‘sleep’, I go into full-blown avoidance mode. Almost like I’m on auto-pilot and the only command in my programme is to stay awake. If I could fix it I would, I’m hoping upcoming CBT may help with this but it’ll be a while before that starts.
For me, sleep simply isn’t natural and it’s not enjoyable or refreshing. Until I’m able to dissociate sleep from trauma and fear it’ll never be easy for me. But I am trying.