i have epilepsy. most of you know this already.
some of you may know that i just have days where i just don't feel right. there are no other or better words to describe it. and anyone outside of my circle, i feel like they just don't get it. its like "what do you mean you just don't feel right?" the best way that i can describe it, and it is still very far off, you know when you are hungover or you just drank one too many cocktails and your head feels foggy? you just feel like you are moving slower than usual?
yeah, its something like that.
things seem slower. more confusing. overwhelming.
these days petrify me. having a seizure in an unfamiliar place, around unfamiliar people absolutely petrifies me.
now campus and my classes aren't exactly unfamiliar. but the people i am around on a daily basis know nothing of my epilepsy. which is my own fault. however, i am afraid of just falling out while i am walking around campus, while i am on the bus, at the library, in the bathroom. you get it. this would be unfamiliar. then i probably would have a stranger helping me.
so by having a day when i just don't feel right. then add then a feeling of fear on top of that. which will automatically add stress. anddd stress is a trigger for my seizures. so, it really can come full circle. and you see my sense of terror.
i don't know how to make these days better. i don't know how not to have these kind of days. because i really think even i live as "perfectly" as possible (which is pretty impossible), i still believe i will have "off" days.
i know its a small part of what i have to deal with. but its frustrating because how do i explain missing class because i just don't feel right? or that i feel off today? its not as easy to explain as the flu or a migraine. people understand that. there are definitions for it. epilepsy is a little less clear.
and perhaps i put too much on myself. maybe people do get it. maybe they do understand. maybe they are sympathetic. maybe they do want to reach out. maybe i just need to broaden my circle and not be so afraid to tell others about epilepsy. so that when i do feel "off" it won't be so petrifying.
2 comments:
have you felt off recently???
Last weekend we were talking about Grandma Trudy. I think the uncles said she described her bad days the same way. She had a code, but I can't remember what it was. Maybe swimming??
I don't really know much about her situation, but the uncles and my dad all said that they wished she had shared the information with others and wasn't scared about what they'd think. They felt very strongly about that. I just thought I'd share it with you. Maybe it will help you feel more confident about enlighting your circle of friends:) Love you cuz!
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