Today is the UKs awareness day for Functional Neurological Disorders (FND).
Up until the end of last year, I had no idea what FND was, but that all changed when I started having seizures. Now I spend quite a lot of my free time researching and trying to get my head around everything that I’m reading to try and understand what is happening to my body. The truth is I don’t really know, and my doctors are confused when I explain for what feels like the 100th time that yes I am conscious during a seizure, just as conscious as I am when I talk about them.
I want to raise awareness because in the space of 6 months my life has been turned on its head by something most people have never heard of. I usually describe it as ‘going a bit shaky’, but it is so much more than that. I have seizures everyday that range in severity. Sometimes it’s like a shiver that goes on for a while or looks like nervous twitching, other times I can’t walk on my own and I’m convulsing so badly that I’m worried I’m going to hurt myself or those trying to help me.
And it hurts. It happens so much that my body doesn’t have time to recover in between. At 23, I can’t always walk or bend down because the pain it causes makes me want cry.
Then there’s the paralysis that the specialist I saw didn’t tell me about. I become trapped in my own body. Imagine not being able to lift your own head up and no one telling you that it’s a symptom of a condition they labelled you with.
This post isn’t to get your sympathy, because that’s not going to change anything. What I hope it does is to shine a light on an under researched and under represented condition, and for people to be a little more open minded because while I don’t always “look” sick or disabled doesn’t mean I’m not fighting against my own body.