Tired of the fight...

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Refracting-light

Refracting-light

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Hello all,
I'm here because I need to vent to people who truly understand what I'm saying. I've had epilepsy since I'm 15. I have ridden the medication merry go round, been for the surgical rule out, had the vns. I have a wonderful husband and two great kids. I don't need a pep talk or my sister saying "what did you expect?" I need to talk to the people who understand my gnawing frustration, hear theirs and justify to myself that we are not crazy. We are angry, a little broken but definitely not nuts. I'm afraid to go back to work. The last two times I did ended badly. :horse: at the same time, I don't want to be defeated. 26 years of my life have been hijacked. Things are quiet, very few seizures. Lots f action, lots of seizures. But my mind wastes away to nothingness. Rotting from lack of use, while my degrees decay on the wall. I Hate Epilepsy.
 
Hello
refracting-lightsaywelcome to cwe and I understand what your saying I've had epilepsy since I was two I've had the VNS it worked at first it did great and I've had RTL(right temporal lobectomy) Had one in Montreal,Canada.
what meds are you taken?
sisters can be cruel when it comes to our sz's I know that.

I hate epilepsy myself so I understand that.
 
Hi, and welcome!
You've been through a lot more with epilepsy than I have, and at 26 years much longer, but I do know what you mean about degrees decaying on the wall; that is how I feel. I worked so long and so hard to get to where I was in my career, and then gone in almost a blink of an eye.
I guess we need to both hang in there as best we can, continue to put up the good fight, and always hang on to the hope that we will become stable enough to resume our lives.
 
Hey Refracting.

We all need to purge every once in a while. I had a week where things were tumbling down. Work was a bitch. I was tired. One of my animals got very sick. Go scream in a pillow.

As for not being defeated, read my signature.
 
Nicely said. It's nice to vent without having to apologize afterwards because the people around you don't understand what it's truly like. Due to the seizures I've had over the last 4 years have left me with over 10 years amnesia, not being able to work and feeling like a huge burden. I get the standard "I understand" "It must be tough" but then when I feel I need support or understanding I find out how little I'm believed and how people close to me don't realize how debilitating this ##$# thing is and make me feel like anything I've said has been heard.

How have some of you explained to family and people close to you what its like?
 
It's so nice to hear your voices. It makes me feel sane. I know my family means well. But you know how it is..."call any time you need a ride." Um, that would be everyday. Breaking news, no cure on the horizon and on hot mix #23 I'm still breakthroughs every week, so driving, not happening. My reality is a separate entity from theirs. "How come the kids aren't taking (fill in blank)?" Um, that would require two drivers. Duh. You are on everyone else's timeline. You do not command your life. I never thought to myself at 12, I want to grow up and become an epileptic house wife because every other door will be closed to me by the time I'm 34. I try to explain my frustration. They hear "they are not what I wanted". Not what I said. I said "I am not what I wanted". They can't hear me.
 
masterjen said:
Hi, and welcome!
You've been through a lot more with epilepsy than I have, and at 26 years much longer, but I do know what you mean about degrees decaying on the wall; that is how I feel. I worked so long and so hard to get to where I was in my career, and then gone in almost a blink of an eye.
I guess we need to both hang in there as best we can, continue to put up the good fight, and always hang on to the hope that we will become stable enough to resume our lives.
Click to expand...

Hey Jen,
Sorry to jump in on a down note. I'm on restart #4 if I choose o try again. But I'm afraid of getting my teeth kicked out, and I don't have many left anymore. I am refractory, as my quippy name suggests, so medically hard to control. But I am going out of my mind at home. I'll pray for your stable and your chance to ride to the crest of it.
 
Belinda,
I'm taking keppra, vimpat and zonegran
The only med I have not tried is onfi. Banzel was my last attempt at new before staying in these three.
 
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