Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

I've had the big E for years, but still can't cope...

Sat, 04/15/2006 - 10:27
OK, people prepare yourself. I apologize in advance to anyone I might offend in this, but nobody else seems to know what I'm going through here, and I found this site, so maybe someone can listen and understand. I'm just so tired of being alone with this, so here goes...I don't know what to do anymore. I've had the big E for 23 years now (I'm 27), and it's still harder than it ever was. When I was 4, I fell and started having seizures. All kinds. So they put me on TONS of meds to control it, and turned me into a zombie in the process. I was poster child for the Epilepsy Foundation, or something like that in 1986. Then they discovered Tegretol, which is what I took 'till I was 9. My doctors then told me that since I hadn't had seizures in a few years, I'd grown out of it, so all was good. But when I was 15, I had a grand-mal in school, and have had nothing but the big ones ever since. It sucks, HELLA. People look at you different, and since I'm totally incoherent when I wake up, I'm incapable of stopping myself from reverting to a child-like state. Then there's the deal with my shoulders. When I had that one at 15, I fell and totally screwed my shoulders, making me unable to so much as throw a baseball, let alone defend myself without dislocating my shoulder. Look, I don't wanna hear some fake "you'll be ok, I care about you" from a bunch of people I don't even know, and I'm not trying to be a dick by saying that. Thing is, I'm just beginning to not care anymore. This has killed my life in just about every aspect possible, and there's no way to fix any of it. I know that I got to being a screw-up by my own accord, but now, I can't get to being anything but that. Every time I have a seizure (about once every couple of months, whether I take my meds or not), I f uck my shoulders up, making my arms all but unusable for a good week, I bite my tongue, making even a small action like eating or talking an excercise in hell on earth, and I live at home 'cause I can't get a better job than the menial, high school kid salary 'cause I can't afford school. Hell, even if I could afford school, I couldn't put in the time, 'cause I can't keep my attention or thought process with it long enough to follow through. What the hell is wrong with me?!? How do any of you live a fulfilling, meaningful life with this? Better yet, how do you get past that point of not caring if you ever hit it? I'm supposed to be living it up, but anymore I just plain don't care. I don't care about women anymore, I just hide in my room for fear I'll have another seizure in front of someone, I get pissed every morning 'cause I woke up (not at myself for having woken up, just pissed that I have to face another day). I've been dealing with this almost my whole life, and I'm so tired. I know it isn't gonna happen at the snap of a finger, but I just want to be normal. I hate this, I hate myself now, and I hate the world. I hate the fact that I don't have any friends left 'cause they all freaked out when they saw me have a seizure. I hate the fact that even my own family helps me out and hangs out with me 'cause they feel sorry for me. And I especially hate the fact that I can't just give up on it all, 'cause it'd hurt too many people that I still care about, and I just couldn't do that. I've tried councelling. They don't care about me. They get paid one way or the other, why should they care about making me feel good? I used to do stuff like drink a lot and do drugs, but that just put a cramper on my finances and kept me from doing anything else, so I quit. I was alone in that circle, as well anyways. It's amazing how weird people look at you and treat you when they see you have a seizure. What's even more amazing is that the reacions of the people I dealt with, the absolute weirdest, outlandish people in society. These people are supposed to be accepting and open to anyone, no matter how they look, how they dress, etc. But have a seizure in front of them, and they all of a sudden treat you like you weren't of the human race anymore. Girlfriends, friends, it's all the same. I have a couple (read:5) of friends that I've had for the last 16 years, but I suspect that they're still friendly to me 'cause they feel bad for me. In fact, I've had mutual aquaintences tell me that's the case. So what the f uck? Tell me, why should I even care anymore? I don't have friends, I don't have family I can trust, no good job, no insurance I could even think about affording. I tried Medicaid and Medicare. Know what they said? I'm a young, white male, that can hold down a job of some kind. I'm not trying to sound racist by making that remark, I'm just saying what they told me. They also told me that it doesn't matter that I can't pay for anything aside from bills. It doesn't matter that I get hurt every time I have a seizure. At best, they'll give me coverage for 3 months. 3 MONTHS!!!! What the f uck am I supposed to do with that? I'm tired of being a drag on my family. I'm tired of worrying whether I'm gonna have a seizure or not every time I step out the door. I talked to my doctor, and he said that in order for me to lead a semi-functional life, Tegretol XR is the only medication I can take. Otherwise, I'd be a zombie. What am I supposed to do now, huh? I'm 27 years old and I've never had my license. I can't watch TV in the dark 'cause I get dizzy. What did I ever do to deserve this? What did I ever do to bring this onto myself, and more importantly, what can I do to make it all just go away? I had FRIENDS!!! I had a LIFE!!! I had DREAMS, godammit!!! I WAS A PERSON!!!

Comments

Re: Hi bassdesres, So let me get

Submitted by happycat2 on Wed, 2006-04-19 - 00:44
Hi bassdesires I read your post. From the picture you paint so far of how your life is, I guess there are some things you can fix, some you can't when the battery really goes flat. As somebody who has lived with epilepsy both as a child, and an adult, I've learned this much. It's you can't either control it, or easily fix it either when things go badly wrong. Not if you've been the cause of it, and made the mistakes, or not paid heed to the signs already there in your past, and taken that onboard. That's the price that's paid. Any expert will tell you that, and I'm not one, I freely admit. As I do that experts can, will and do get things wrong. When they do it's up to ourselves to seek the answers. I hope that you find yours, and have to ask, have you thought of trying therapy. I heard and read that helps in situations like yours. As does being gentle to yourself, and giving yourself time to get used to things. Hang in there, and try and stay positive and upbeat-that helps, as does talking a walk when things get tough. Cat. "Many false prophets are gone out into the world." 1 John 4:1

Re: Hi bassdesres, So let me get

Submitted by bassdesires on Wed, 2006-04-19 - 03:41
Well, I thank you for your response, as well as your advice. As for your little pity comment, I'll have to give you a resounding FUCK YOU on that one. I'm not looking for pity, nor do I pity myself. Look, you've had E for twice as long as I have, and I respect that. But in having your experience, you should know damn well that once in a while (all the time for some), you just don't care. What's the point? I'm not here looking for some chump to feel bad for me. All I came here for was to find someone that understands where I'm at, and maybe give up a couple of answers to questions I've had almost my whole life. As for the whole license thing, well, guess what? I had my learner's permit and the whole nine. I even had a car, but I made the mistake of putting that I was epileptic on the damn application. And it doesn't matter that I never had it. You try being whatever age you are and trying to explain to people why you have to take public transportation everywhere. Oh, you do? Well, welcome to my world. THAT'S what is bothering me, jack. I don't care that I never had my license, because, as you said, I never had it to miss. But once again, you try stepping into my shoes. When you were 16, did you have yours? I guess you did. Now that all my friends are old enough to be buying their first new car, doesn't it suck not to be able to do the same? You wouldn't know, would you? And how's about getting a date? Oh, you're probably married, so you don't know dick in that department either, do you? Look, I'm not trying to come off sounding like some kind of dick, but you gotta be willing to look at me objectively and take a small stroll in my shoes before coming down on me and making assumptions or judgements. Like I said before, I appreciate the advice, and I am gonna go see about an epileptologist. I didn't know there was such a thing, 'till you just told me. You had to care on some level, or you'd have never replied in the first place, so thanks. Just don't come down on me in the future without knowing all of what's up, ok?

Re: Re: Hi bassdesres, So let me get

Submitted by Anonymous on Wed, 2006-04-19 - 09:08
Thanks for sharing your experiences - you'll find lots of caring people here. Would welcome toning down the language though! While no easy answers, seeing experts in epilepsy may help you sort things out and get a better handle on seizures and how they are affecting your life. Good luck and hope you find the information sections of Epilepsy.com helpful as well. Epilepsy.com Resource Specialist

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.