Epilepsy and Plans…

Three weeks ago, I woke up lying in a pool of my own vomit. I’d been in and out of consciousness and alone. I have no memory of it. I’m struggling, really struggling, to process this.
I don’t even know where to start. It’s been 3 weeks and I’m still not firing on all cylinders. I hate that. My head is full of cottonwool, my mind is muddled and my thoughts are dark.

I keep thinking back to GGG Agnes who died because of a seizure. Did she choke on her own vomit? I make no apologies for the graphic nature of this post. I don’t know how to put it politely and to be honest, I just want to get the thoughts out of my head and onto paper. Writing helps me, it doesn’t make my feelings less intense, but it does allow me to process them a bit better.

I was alone. No-one missed me. That sounds dramatic doesn’t it, but it isn’t. I like my own space, I like my own company and it isn’t unusual for me to go a few days without speaking to or seeing anyone. I’m ok with that. Several people, some good friends, some acquaintances, have suggested, understandably, that I check-in with someone at least every day. For my own safety and, maybe, for the sake of others’ peace of mind too? That just doesn’t work for me. Does that make me selfish? No, it doesn’t. I’ve had a diagnosis of epilepsy for over 20 years and no-one has bothered before to suggest I check-in. I know the suggestion is currently borne of genuine concern for me, but it doesn’t take into account “me” and how I like to live my life. And it is my life and that means I get to make the decisions that affect it.

This is the first time in my epilepsy career, that I’ve not been able to piece together the jigsaw and account for the time between the lead up to the physical seizure and the coming to. To suddenly start changing my life to check-in everyday with someone, to me, feels like an imposition and pressure on the recipient of the check-in, and an infringement of my human rights! It feels like an Epilepsy ASBO if you will. It’s bad enough that I get electronically tagged as a potential flight risk when I go into hospital! I don’t want to start having to account for every single hour of my day to someone else. However, I do accept that this was a potentially dangerous, dare I say life-threatening, situation and I recognise that it is the responsible thing to do, to have some kind of plan.

So, my very good friend, the lady who persuaded me to write this blog, has agreed to be my buddy as well as a my friend. The theory is, we are in touch virtually every day by electronic communication anyway, so it doesn’t feel intrusive to get a message from her. Our agreement is, if she doesn’t hear from me for a period of 48 hours, she has permission to contact family members and/or the medical profession to flag that I’ve gone off radar. I’m comfortable with this arrangement and it’s gone some way to alleviating the worries of some others. The suggestion that I have a panic button installed was dismissed very quickly, given that I would be in no state to recognise that I needed to “panic” and press the button!!

So, future plan is in place; present pickle persists. I simply can not get my head around this episode. I can’t forget about it and move on; I can’t compartmentalise it; I can’t stop turning it over and over and over and over again. I’m a little lost.

Actually, I’m more than a little lost. I know it. I can persuade others quite easily that this will pass, but I find myself questioning whether it will. I’m the first person to shout from the rooftops that an epilepsy diagnosis is not the end of the world; I stand by that. I firmly believe that it’s simply an obstacle that can be overcome often more easily than other illnesses. That said, I don’t take epilepsy lightly. It’s a seriously misunderstood, under-advertised condition that affects a not insignificant proportion of the population. It is often a life sentence and it’s rarely an openly discussed topic.

What happened to me 3 weeks ago, happens to someone every single day through misuse of drugs and/or alcohol. That scenario is often discussed, laughed about, advertised on social media and occasionally worn as some kind of bizarre badge of honour. I never have understood, and never will, why some people choose to see waking up in a pool of vomit as something to be proud of. Maybe I’m missing something?

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