Hi all. I'm new to the group and just wanted to say hi. I'm not
entirely sure why I joined as I generally have a hard time talking to
people about my seizures. I can explain what epilepsy is, and how to
react when I have them. I'm used to that from having to do it at
school. (I'm back in college after too many years out.) I guess I
just wanted to feel like I wasn't alone. There's so many things you
CAN'T say to the people around you. How do I tell my husband how
sorry I am for how this effects HIS life? See, when he met me, I had
partial seizures, and occasional tonic seizures. Things are getting
worse though, and my neurologist doesn't know why. My seizures are
from a combination of a head injury and a minor birth defect. She
says I have motor cortex tissue in the wrong place, whatever that's
supposed to mean. On medication I get only about 3-5 seizures a week.
I know that's a lot, but for ME, it's not. OF course, when I apply
for disability they say there's a job out there for me somewhere. I'd
like to know where since every job I have gotten in the last five
years has found a reason to get rid of me. In the law firm it was
when I had a seizure in front of a client. Two days later I was fired
for being three minutes late. At the gas station it was "leaving the
till unattended" during a seizure. At the factory, "creating an
unsafe work environment" by having a seizure that caused me to fall
into the lane the forklift drivers use.
I don't really know why I'm here. My neurologist tells me it's not
going to get any better. We've tried dozens of medications. Surgery
is not an option. I wonder sometimes if she could find an answer if I
had medical insurance. I'm going to try and apply for medicaid and
see if they will take me even though I can't have children. I guess I
just felt alone. The only friend I had who really understood what it
felt like has had to move away because her husband lost his job and
the only one he could find was in another state. I just feel like my
life is falling apart and I don't know what to do.
I can't go out alone. I can't go upstairs to see my friends. My
doctor says no stairs and the last time I ignored that rule I had a
seizure at the top and broke my knee on the way down. I can't cook
except in the microwave or toaster oven because I set a fire once.
The list of things they say I "can't" do gets longer and longer until
I start to wonder what's left. I've been getting pretty depressed
lately. I guess that's rather obvious. I want a life. A real one.
Not this.
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