For the most part, I'm quiet on this blog at the moment. My passions have changed, my life has changed - a lot of the things I want to blog about don't really fit this blog. So I leave it here and spend my time talking about wishing I wrote more and attempting to come up with a snappy title for a new blog, where I'll write about the things that are dear to me. But here's where I come back to when I just need to write it all out. This is more for me I suppose, although it may be interesting to read if you've found my other blogs on Non Epileptics Seizures interesting (there's a link at the bottom to the first one if you want to read it)
My seizures had, for the most part, gone. I was having the odd very small one (and the very occasional large one) for the best part of a couple of months, which was nice. Then I had a three fairly stressful weeks, and somewhere in amongst the stress, my brain opened up whatever shitty door it is, and my seizures crept back out. In general, it's been easier this time. They're nowhere near as unrelenting, their general tone has been calmer and I've been in a much stronger place to deal with them, both mentally and physically.
Yesterday was different though. Yesterday I had a seizure which, including the run up and the aftershocks, lasted from 8.30am to 3pm. It's difficult to explain quite what my seizures are like, but often, they're not like you'd think they are. For the bulk of this one, I was sat in Starbucks, on a chair in the corner, shaking uncontrollably. From the way people looked at me, I clearly looked like I'd decided to get over the Monday blues with a handful of class As or a few bottles of gin. Either that, or I looked like a crazy person, which I suppose in many ways is right. My seizures can be classed as a dissociative disorder and even when they're not, they come under that gloriously under-funded umbrella we like to call "Mental Health".
The thing about this seizure that made it quite so scary is the loss of knowledge of who I was, where I was and what the hell I was meant to be doing. I'd pick up my cup of tea, raise it to my lips and then pause, looking at the cup with what I imagine was confusion, as I attempted to understand why that cup was near my lips in the first place. I thanked my brain for the gift of auto-pilot as I crossed the road from my bus stop with no real idea of where I was, and managed to find myself in a Starbucks. I took the few minutes of lucidity to text Jed and let him know where I was and what was happening. I felt lost, alone and disoriented. And yet all people did was sit and stare at the shaking girl. I should know by now not to expect better, merely to be pleasantly surprised and thankful when people do offer to help, but when you feel that lost and confused, having people stare doesn't help you feel less vulnerable.
It's not the first time this has happened - I have whole patches of my summer that I genuinely can't recall. I couldn't put events that happened between the end of March (when I first started having seizures) and the end of August (when they cooled down) in chronological order if I tried. I'm aware of the fact that I find it harder to recall and retain facts than I did before I started having seizures, and I get patches where I don't know what I'm saying or doing.
These are the bits that upset me the most I think. The shaking and the aching and the exhausted, wobbly feelings that fill my body are frustrating but fine. I can deal. The loss of control of my words and thoughts though - that side cuts deep. I see the fear and the worry in the eyes of people who love me, and I wish desperately that I could make it stop, that I could remember who I am and where I am and remove the look of terror and desperation from my face.
And I will. I will overcome these. I reflect back on the progress I've made, and I feel nothing but pride for what a badass I've become. And for what a badass Jed is. Some of you reading this might know him, a lot of you won't, but seriously, that man is incredible. He's pretty much single handedly cared for me the whole time, and that's a pretty exhausting, frustrating task. I'll shush now because he'll probably tell me off for gushing over him, but if you know him, and you know I'm having seizures, he's probably appreciate the hugs. And I'll stop here, because I'm teary with gratitude and exhausted by frustration, but to write this out has helped. If you've read this far, thank you.
(I'm going to put a link here to my first post on
life with Non-Epileptic Seizures because it explains what they are and all that jazz)
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