Zoe
Before I started having seizures, I was the model student. I attended all classes, completed all homework and achieved good grades. I was physically active, taking dance classes in ballet, tap, modern, and jazz, as well as being a competitive dinghy sailor and enjoying paddle boarding for leisure.
At 16, I was diagnosed with Functional Neurological Disorder. There’s no detectable cause and the best way to describe it is a cross between epilepsy, Parkinson’s and ME. For me, it mainly causes random tremors, migraines and seizures. At first, they happened every time I got off a bus and then they became more regular. After a seizure, I often experience memory loss (approximately an hour), muscle spasms, headaches, sensory sensitivity, full-body pain, fatigue, and a stutter. I might also lose the ability to speak, develop a migraine, and possibly experience temporary paralysis.
As my seizures mostly occur in the evenings, I often wake the morning after a seizure with what I call a seizure-hangover, such as a headache, tiredness, brain fog and a loss of balance. My triggers are mainly sound, tiredness and extreme anxiety, so I manage this with sound-blocking headphones, medication, meditation and therapy.
I also keep a bullet journal to keep track of my studying, productivity and wellbeing. FND affects my memory and I struggle a lot with brain fog, so I have to be organised and write everything down.
I don’t want my condition to stop me from living; I want to live and not just exist. For me, it’s generally about not letting it beat me and letting others know in any way possible that this doesn’t have to stop you from having a life.
At first, I had a lot of negative thoughts, like I wasn’t safe to go out, I couldn’t do anything or that I was a burden to others. Slowly, I began to realise I could manage certain things and I could take baby steps towards doing the things that I wanted to do, even if my disorder told me that I couldn’t.
I would also say, never be afraid to grieve the life you thought you were going to have, but make sure you accept that this is your life now and find a way to make it work for you.