Sleep is a vital component of survival for human beings and it can be especially important for people who have disabilities which mean they expend more energy on a daily basis than others. I have always had quite a challenging relationship with sleep as a result of my cerebral palsy and it has impacted my daily life greatly.
As my mother would tell you, I was a hellish baby – I would constantly scream, cry and refuse to sleep through a night. Doctors had put this down to me having chronic pain and assured my parents that I would most likely sleep better as I got older, unfortunately it wasn’t quite so simple. For the next six or seven years I would demand that my poor mother lay and cuddle me to sleep which I commend her for always agreeing to do as I’m sure she would’ve loved an early night once and a while. My mum thinks that my constant need to be cuddled before bed is because of my lack of proprioception, because my brain receives the signals from my nerves differently I can’t always feel where my body is so she theorises that this was also a need to feel where my body was. Once I’d grown out of this, I slept decently for a period before I started having seizures.
The years of my childhood that I experienced seizures were honestly some of the scariest years of my life. For some of my seizures I would be totally unconscious but for others I would be aware of what was going on but totally unable to control my body, these were definitely much worse for me as suddenly losing control of yourself is such a terrifying experience. The first few seizures didn’t last too long so by the time they had started and I had woken my family up, they would be over. After my mum had spoken to the doctors about them she was advised to call an ambulance should it happen again – and it did.
I remember one night I had a seizure, the ambulance was called and off I went to hospital. Me being me, I remember feeling scared momentarily and then proceeding to joke with the paramedic that I was disappointed the blue lights and sirens weren’t on. It was definitely a very difficult time for my parents and being maybe eight or nine I don’t think I really understood how dangerous seizures could be. After this I tried numerous epilepsy medications (the amount of drugs I’ve tried throughout my life is genuinely impressive), some would make me start drooling more or make my speech worse and one even made me uncontrollably intense rage towards everything around me. Eventually I did settle on a drug which worked but after I’d been seizure-free for a few years I was weaned off of it. There was never much explanation of why I developed seizures or why they eventually just disappeared, but I have learned that this is quite common in people with cerebral palsy.
Even though the seizures had stopped, I would still get quite anxious before bed as it would always be right before I fell asleep that they would happen. It was as though my body was scared to relax for fear of having a seizure even though they’d ceased. Then around the age of 13, I started experiencing these awful growing pains in my legs and sleep, again, became something that would make me anxious. Throughout my teenage years, I’ve just always struggled with getting to sleep and having exams on top of this lead to me always feeling exhausted.
People would often say that I seemed tired at school and while I would just shrug and say I hadn’t slept much, internally I was really frustrated because no matter how tired I was I couldn’t get to sleep. I still really struggle nowadays getting to sleep even though I’ve found pain managing medication that works for me and my anxiety over seizures has faded away. Though I think I can put it down to me just having a very overactive mind and even still, not knowing how to silence it. My body is also not used to just relaxing automatically at nighttime but I am striving to one day have a semi-normal sleep schedule. Epilepsy during childhood years within kids with cerebral palsy is also much more common than you might think, so I’m glad I can share my experience with it.
Buttons and Ramps 