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At age 13, I used to be identified with juvenile myoclonic epilepsy (or JME). It’s not practically as extreme as my sister’s type of the situation, however however severe.
Once I was 15, I skilled my first tonic-clonic seizure (also referred to as a grand mal seizure), which causes muscle contractions together with lack of consciousness (most likely what somebody may think once they consider a stereotypical seizure). At that time, I used to be placed on treatment for my epilepsy.
I had a number of negative effects because of this treatment, and I wasn’t actually open with anybody about what I used to be going by way of. I skilled a number of nervousness, hyperactivity, and insomnia. Plus, the second I used to be placed on treatment, my quality of sleep was severely impacted. I felt very low, and unable to pay attention—that are signs of epilepsy, however I consider they had been exacerbated by the treatment, as properly. Contemplating sleep deprivation and stress are two main triggers, this was all very regarding.
Whereas individuals primarily affiliate my situation with seizures, it’s additionally about dwelling with the worry of a seizure. In my case, I used to be having shut to 1 grand mal a 12 months, however there was an incessant worry of getting one on the fallacious time, or what may occur because of this—falling and hitting my head, dropping management of my bladder, experiencing it when nobody was round.
There are additionally completely different sorts of seizures, past grand mal. I additionally endure from myoclonic jerks, that are little interruptions within the mind—I at all times describe them as like matrix interruptions, when my arms will type of jerk open. I additionally expertise what’s referred to as an aura, which appears like I’m zoning out, however actually it’s a sort of seizure. Plus, people who find themselves epileptic have photosensitivity, so I wanted to be cautious of shiny flashing lights, to keep away from triggering a seizure.
Every time I had a seizure, I felt like a chunk of myself had been robbed in a roundabout way. Each triggered mind harm to some extent and, in my expertise, a lack of confidence. It looks like your entire world has been turned the wrong way up. It’s completely terrifying to get up and see individuals above you, asking if you understand who they’re, and in the event you’re okay. In these moments, you haven’t any concept what occurred, aside out of your pounding headache.
There are simply so many layers to it that individuals who don’t have this situation might not take into account. And, sadly, epilepsy comes with a horrible stigma, so I just about stored my invisible sickness to myself for years.
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