This past week has been super difficult. Last Tuesday I had a nasty cluster of seizures and the recovery has been even tougher. I’ve wanted to write about it all ever since it happened but every time I started composing the piece in my head, it just turned into a giant ramble. So here is a, hopefully, well split up and composed piece about the issues I’ve faced this past week.
The Actual Seizures
There are two reasons this cluster was so harsh and scary for me. The first is that I had approximately 10 seizures in less than 24 hours. The biggest cluster I’ve had in over a year, the largest I’ve had since my VNS Implant. It felt like a step backwards and what makes it even worse is what time of year this took place.
I know it sounds crazy, but it seems every two years in February my epilepsy just takes a downhill turn. Anyone who’s followed this blog for a while knows at least some of what went down in 2019 and Facebook memories just keep alerting me to more horrible clusters and A&E visits that took place during this month too. It’s like I’m cursed or something.
The second concerning thing about this cluster is that the first seizure was at roughly 3:30 PM. All my life my seizures have been nocturnal. I’ve always had that sense of reassurance that, as long as I don’t go to sleep, I’ll be fine. But this cluster started in the afternoon. It didn’t follow over from the night before it started in the day and for no obvious reason.
I hadn’t missed any pills, I hadn’t had a change in stress levels, I wasn’t unwell. Yet I had a massive cluster of seizures. This is why I think I’m cursed. Things just always get worse, out of the blue, when I need stability the most. Whenever things start looking up, bang, epilepsy is back in town. And consequently, I’ve felt lower this past week than I’ve felt in months. Sometimes epilepsy just sucks, that’s why we’ve got the hashtag.
Disclosure: The rest of the post was written one day after I started it and I believe there’s an obvious change in tone. If you ask me this just highlights the severity and full control an experience like this can have over someone. How the way someone feels one minute could be totally different from the next. This is why I write, to help myself cope and help others understand what it’s like being me.
I imagine one would normally associate the word injury with cuts, bruises and broken bones. However, when I injure myself during seizures, it’s my mouth that usually takes the hardest hit and last week was no exception.
The moment I came round from the final seizure I had on Tuesday evening, I grabbed the side of my face and began wailing. Based on the pain I was feeling and the general sensation in my mouth, I was almost certain I’d bitten off part of my tongue. Instead, I’d just severely damaged it. By the next morning, it was already infected and by Thursday that infection had spread to the inside of my cheek as well. I’ve now got two ulcers on the inside of my bottom lip, extremely swollen gums, excessively chapped lips and I’m over salivating too.
For the past week, I’ve been in non-stop pain, unable to eat food and now I’m on antibiotics that are messing up my stomach. And if this wasn’t frustrating enough, because I’m on antibiotics I’ve also had to cancel my COVID vaccine!
It’s honestly crazy how something as seemingly minor as a bitten tongue and make you feel so ill. I know tongues tend to heal quicker than cheeks, so as I lie in agony, crying as I type this, I’m hoping I’ve reached the peak pain point. But even if I have, I’m not coping.
The Mental Strain
I already mentioned above that I’ve been feeling down, however, now I’m coping even less. In recent posts, I spoke about certain opportunities that were on the horizon. I’m meant to be co-presenting a paper at a genuine online conference in two and a half weeks. But I’ve not been able to attend team meetings or even complete the work I promised I’d do because of these stupid seizures. The feeling that epilepsy is a demon that’s been put inside my brain to ruin my life is very real right now.
But anger and analogies aside, it’s just generally very scary. The damage I have caused to my own mouth is shocking. And during a cluster that started at 3:30 PM. VNS had made me feel safe in my own body again but right now, I really don’t. I’m going for a blood test on Wednesday and once she has the results my consultant is going to arrange a phone appointment. It’s very likely another med change is on the horizon.
I just wish things could stay good for longer than 18 months at a time. No matter what, a deterioration in control is always a hard pill to swallow. I guess my official diagnosis of ‘refractory’ still stands. It doesn’t matter how ok I am with my epilepsy, when I shred my own mouth to bits, it bloody sucks! Epilepsy is never easy and I’m not ashamed to say I’m struggling.
In full honesty, all that needs to be said has been said. Right now I have a ripped-up mouth and a shaken soul. I don’t know what the future brings and I’m trying my best not to speculate. For now, I’m just attempting to heal and recover. So, if you want to help boost my spirits a bit why not subscribe. All you need to do is fill out the form at the bottom of the page (on mobile the form is off-screen to the side, something I plan on fixing in the near future). It merely means an automated email each time I upload a new post, nothing else. Plus, once I have more followers who I don’t share a home with I may even start creating subscription-only content. So you really have nothing to lose. Oh, and if you want to respond, do so on the actual post (comments are also at the bottom of the page) rather than where you see it shared. It builds traffic etc. and helps me out.