Having I’ve always had epilepsy, well nearly always, since I was 7 years old. As a result I have always just… gone with it, for lack of a better description. Seizures have always happened, and over time you establish that you spend more time worrying about how it is perceived by others than how you are actually feeling. So you could suppose that I’m okay with it and I have made my peace with it.
No. This couldn’t be further from the truth especially as an adult, where we are meant to be allowed to make choices to a far greater extent than when we were children. With epilepsy we are not always afforded this luxury; which I suppose is why I am (or was at least) happier to accept it. Accept it as almost predictable, routine, like clockwork and even bizarrely comforting. This arrangement is fine until it isn’t, routine, like clockwork and comforting.
A few weeks ago I was away with my family, visiting family. We travelled a little bit, planned a lot, but got there in one piece and had plans for the weekend which we were excited about. We arrived into the hotel where we were staying and had some food and went to bed (nothing out of the ordinary there). In the middle of the night I woke up and needed to go to the loo. Off I went and sat down (I wasn’t in the mood to stand). And at that point it all went black. The rest is grim and to be honest messy.
That was the first (possibly second, arguably third :S) “proper” tonic clonic seizure that I had experienced in years. I was (and still am) gutted. I have had partial seizures for years but this was old ground which I had hoped to never go over again. I didn’t realise how vulnerable and crappy that makes you feel. It was like having a bad hangover, but without having the cracking night out the day before!
With a numb tongue, bruising and banging head I realised that at that moment I didn’t have it, it had me. Shit.
All of a sudden and for the first time in a long while going outside or doing anything alone was a massive deal. Its quite a lonely place to be. Not being one to admit defeat to this sort of thing, I downloaded a seizure tracker app, I wanted to know how many seizures I was having, of what type and when.
Prior to keeping a proper record of my seizures, I had always thought that my seizures were most prominent in the evening. As a result my AEDs are geared to compensate for that. Based on my data from the app, the happen in the middle of the day and are plentiful. Far more than I had previously thought, about 5 times more.
So maybe I haven’t been managing it, I have been ignoring it. The seizures weren’t predictable or routine.
Following this revelation things have picked up. I have learned that optimism and epilepsy does’t always work. I’m also happier to accept the reality of it. Reality being, in the time it has taken to write this I have had 2 auras, but on the plus side no seizures. Which is good as I have food in the oven.
So that’s that really, I hope that was useful in some way. Please leave a comment if you can. Thanks for reading.