accepting a disorder (1/?)

(This got really long somehow.  Blame it on being in the mindset of writing final papers.)

I was thirteen when I had my first seizure, then none again until 2008.  Now it’s up to eight total in my lifetime, from the years 2008-2015.  (Two in 2008, one in 2014, and five in 2015).

Needless to say, this year has been the roughest year of them all in terms of my epilepsy.  But one thing is for sure: I’ve learned a lot about my own disorder and the way it affects me specifically.

I’m one of the lucky ones in that I haven’t had more than eight, and that I’m on medicine that controls them so far, at least until I have another medical procedure that induces one (one in 2008 and one in 2015), and I don’t have photosensitive epilepsy.  (That means flashing lights aren’t one of my triggers.)  They are controlled, and usually when I have one it’s through fault of my own.  (Minus those, y’know, three that were results of procedures.)

Typically, I’ve gotten experienced in knowing the warning signs.  But here’s the thing about warning signs: I still never know when it will happen.  Additionally, I usually don’t have time to tell someone I’m going to have one, even when I’m good about letting people know when I “feel weird” which is the only way I can describe auras.

Two new epileptic experiences happened with me this year that I’ve never before experienced: seizures while asleep or alone.  I’ve always been with someone at the time of my seizures, but hey, sometimes my brain likes to switch it up.

The first, I was asleep.  I woke up distraught and wanting to cry, and immediately recognized the postictal state I was in.  As a result I went to my mom’s room, woke her up and explained what happened.  I lay there for a few minutes, trying to get back my brain function but eventually went back to my room and fell back asleep there.  I was sore and my muscles heavy everywhere the day after, and that confirmed the theory that I’d had a seizure.

The other I had was recent, October 28th, and I got a nice ol’ black eye from this one.  I’d been sitting up in bed, and apparently fell to the left, where I hit the corner of my night-table, and then fell to the floor.  I woke up on the floor in confusion and tried to reach for my glasses in their case…but they weren’t there.

So again, I went to Mom’s room, woke her up, and asked her to help me find them.  She did, and they were somehow not broken — but one of the arms was bent at an impossible angle.  I was able to get them back to mostly-normal, but I’ve never seen glasses like that.

Again, the muscular aches and heaviness accompanied me the following day and for days after; I bit my tongue as usual and of course, there was the black eye.  It took forever to heal, but now it is (finally!).

The waking-up process is so incredibly weird and surreal.  Almost like something out of science fiction for me.  I’ll save the effort of trying to put the experience for a later time because I’m running out of energy now, but rest assured.   It’s trippy and probably impossible to explain to a non-epileptic.

But I’ll do my best.


2 thoughts on “accepting a disorder (1/?)

  1. i cannot imagine this. i enjoy reading about your experiences because i have no knowledge of what that must be like for someone. i hate it for you either way.

    • Thank you – it’s hard to get used to for sure. You think I would be by now but I’m definitely not. It’s so tough to explain but I hope that I can. I appreciate all the support I’ve gotten over this for sure, it’s so depressing to go through something like that alone – as you know.

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