As we approach September I prepare myself for ‘the epilepsy talk’, this is the talk I give to all my classes at the beginning of the year, to explain what epilepsy is, how it affects me, and most importantly what they need to do should I have a seizure. This talk usually consists of me telling the pupils to leave me alone and let me sleep; and that I’m normally out of it for about 48 hours, and in pain for much longer. Basically, if I have a seizure you will find me on the sofa asleep for at least 2 days if not longer, with barely any of this time awake!
However, I think I may need to make changes to this talk! I really didn’t realise what an effect the exercise/weight loss has had on my life. Yesterday morning I had my first seizure in nearly 14 months. Gutted – yes; but actually unlike any seizure I’ve had before. There were a few highlights
- I didn’t bite my tongue – I ALWAYS bite my tongue, that’s how I normally know that I’ve had a seizure – I was happier just to be told by my husband
- I wasn’t particularly post-dictal (really ridiculously confused, spaced out, not aware of anything that has happened or is happening)
- I didn’t go straight to sleep, I sat for a bit, got a bit weepy, then got ready!
Since the seizure Sunday morning I have travelled to Birmingham on the train on my own; gone for a meal with the family; played board games with my mum and niece; taken my niece bowling, for lunch and shopping; visited my aunty; had dinner and will be shortly going out to the pub!!!!! Previously I probably wouldn’t have managed all that in a week, let alone 36 hours after a seizure!
As I travelled on the train I gradually noticed bruises/lumps and bumps including: a lump on my eye which is gradually going black, a painful swollen ankle, a bruise on my chin. But I haven’t let it hold me back. I had decided I was going to Birmingham, I had promised my niece that I was taking her for a day out. My brain was NOT going to stop me.
My first text this morning was to my friend saying ‘the worst thing about going over a year without a seizure is that when you have one you forget the horrific pain of waking up in the morning and not being able to move anything’ the response I got, and needed was ‘yes I am actually really pleased you have forgotten but remember how is the “today” Helen going to deal with the aftermath of the seizure’
The “today” Helen has just got on with it, I’ve not been stupid about it, and will not be going running/gym until the ankle is stronger. But I was not going to let it get in the way of my plans with my niece, or family in general. Most importantly, in the same way that I didn’t feel guilty having my mums home made lemon meringue pie, I have often been annoyed with my brain, or even myself when I’ve had seizures, especially when I’ve been ages without having one. But this time I honestly haven’t – such a relief not to feel guilty and not to let it take over!
I’m getting more and more amazed by how widespread this lifestyle has become! Which other barriers will I be able to jump over?