At age 13, I used to be recognized 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 (often known as a grand mal seizure), which causes muscle contractions together with lack of consciousness (in all probability what somebody may think after they consider a stereotypical seizure). At that time, I used to be placed on remedy for my epilepsy.
I had a whole lot of uncomfortable side effects because of this remedy, and I wasn’t actually open with anybody about what I used to be going by way of. I skilled a whole lot of anxiousness, hyperactivity, and insomnia. Plus, the second I used to be placed on remedy, my high 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 remedy, as nicely. 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 residing with the concern of a seizure. In my case, I used to be having shut to 1 grand mal a 12 months, however there was an incessant concern of getting one on the improper time, or what would possibly occur consequently—falling and hitting my head, shedding 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 all the time describe them as like matrix interruptions, when my arms will form of jerk open. I additionally expertise what’s generally known as an aura, which seems to be like I’m zoning out, however actually it’s a kind of seizure. Plus, people who find themselves epileptic have photosensitivity, so I wanted to be cautious of vibrant 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 ultimately. Every one brought about mind harm to a point and, in my expertise, a lack of confidence. It seems like your complete world has been turned the other way up. It’s completely terrifying to get up and see individuals above you, asking if you understand who they’re, and for those who’re okay. In these moments, you don’t have 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 think about. And, sadly, epilepsy comes with a horrible stigma, so I just about saved my invisible sickness to myself for years.
