I’ve been writing this blog on and off, in bits for the past week. You see, the end of last week wasn’t much of a Fri’yay but more of a Five’day for me. As I had my second cluster of seizures in just two weeks, the fifth and worst of which actually took place whilst I was writing the start of this blog.
It’s a hard pill to swallow, particularly alongside all the others I have to take as a result. I feel as though my health has taken a u-turn and I have no explanation as to why. And in more ways than one, it just bloody sucks!
As already mentioned, last Friday I had five ‘big’ seizures. I often wonder whether I should ‘grade’ seizures at all. There’s already a lot of misconception surrounding different types of epilepsy, assumptions that some are worse than others when really they’re just different. But for me, personally, these were far worse than they’ve been in a while.
At 1 AM -ish in the morning, my mum actually had to call an ambulance as the seizure had gone on for over five minutes (the danger mark) and my emergency meds are out of date. I was actually wondering if this may be the case a few weeks back. We’ve not had to use the medication in about a year after all, so I chose not to mention it to anyone. But that alone emphasises just how significant this cluster was.
Whilst lying in bed on Saturday I looked back over some of my old Instagram story highlights. 54 weeks ago, in the one titled VNS Journey, I was ranting about how upset I was that I’d had two seizures and not just one. The sudden lack of clusters was the one thing I wasn’t expecting from VNS. As described in my first update, It was the best surprise I received. So going from no more than one seizure every month or so, for the past half-year, to two clusters in two weeks is concerning. I don’t have an explanation as to why things have changed. And worse so, no proof that it’s not just going to continue getting worse.
Seizures always take a toll on your body. But when you have five fully convulsive ones, it takes even longer to recover. My physical healing process has begun, however, on Friday my upper lip looked swollen, like someone from TOWIE who’d made a decision they’d later regret. My legs were so weak I couldn’t even lift my foot up (out of bed) to show off my new socks. And of course, the inside of my cheek had been totally ripped.
When I have seizures I also take an additional medication called Diazepam (or Valium) for a minimum of three days after. And drugs alone can be draining. But when you add that exhaustion to the equivalent of what one may feel after five marathons, you start to get the full picture.
I spent three days in bed, sleeping and just resting. Showering after the sun had gone down and getting dressed straight back into PJs. This is tough for me to accept. It’s like I’m sliding back down a snake rather than up a ladder. In order to recover, I have to pause everything and I don’t want to. I’m meant to be moving forward, not backwards.
It’s known that people often feel down after seizures. This time around, it took until day four of recovery for the post-seizure depression to hit. My assumption is that for a while at least, the exhaustion was keeping my mind afloat. Now, however, I feel like I want to bury my head in a pillow and cry, only that would hurt my now bruised lip of course. I just feel kind of lost. I know that letting myself recover is the best thing to do, but it’s still not easy.
My Future Fears
I’ve mentioned multiple times recently, to my dad, how I want to grab opportunities whilst my mental health is still good. Yet, not in a single one of those discussions did I consider that my physical health could deteriorate. Where’s my defensive pessimism gone? Surely I’m not dumb enough to actually think things can get better and stay that way? I feel stupid.
I don’t write about potential opportunities, but 2021 genuinely looks like it could have some open doors for me and I just don’t want this stupid condition to slam them all in my face again. There’s no doubt 2020 has been bad for everyone, but this was meant to be my year. Things were supposed to get better. And now I feel like I’m back at the end of 2018.
In April, I had an epiphany moment. I suddenly realised that being seizure-free was genuinely a possibility for me and that wasn’t terrifying. Epilepsy is all I’ve ever known, it’s such a huge part of my identity, of who I am. So being without it has, in an almost morbid way, always scared me. I guess that’s what makes this so tough. I’d finally moved past that fear and was ready for a life that’s not completely controlled by epilepsy. But now, that feels unlikely.
I just need to keep telling myself, a cluster of five isn’t as bad as 10 (my 2019 average) and it’s certainly nowhere near as a bad as 30! I suppose this year that’s what we’ve all learnt to do, appreciate mediocre improvements. Unfortunately for me, three weeks ago I had two seizures, last week I had five. The only evidence I have (as minimal as it is) suggests things are worsening again.
All I can do is hope. Try not to let my anxiety prevent me from going to bed (it’s currently 3:15 AM- I seem to write a lot at this time actually). Take my meds as always. I hope, full-heartedly, that the post-seizure depression passes quickly. As odd as this festive season has and will be, I still want to be able to enjoy it with my family because they’re everything to me. And a cluster of five seizures just reminds you of that.
I hope this isn’t my last blog of the year as not only do I already have several others written but not yet posted, but I’d kind of like to end the year on a brighter note. However, just in case, I wish you all a Happy New Year and if you want to give me a Christmas gift, why not scroll to the bottom of this page and subscribe (on mobile the form is off-screen to the side, something I plan on fixing in the near future).
This whole site is my own creation, one of my biggest achievements of 2020. And by filling out that small subscription form you’ll really help me continue to grow it. It simply means an automated email each time I upload a new post, nothing else. Plus, once I have 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 rather than where you see it shared. It builds traffic etc. and helps me out. Apologies for the sales pitch and genuinely thank you all for reading this far and sticking with me through thick and thin. I really do appreciate it.