I want my life back too

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epilepticloner

epilepticloner

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I want my life back, too! I am 15 years old and I can't do anything the other kids are doing because of my epilepsy. When somebody has a party I can't go because there usually is a disco ball or some other form of flashing lights. I can't drive (while everyone else my age is currently taking Driver's Ed AND KEEPS TELLING ME STORIES OF HOW MUCH THEY LOVE DRIVING, knowing that I won't be able to do that, because nothing has worked to control my seizures). My parents won't let me go on roller coasters because she read online somewhere that this kid had a seizure on one and nearly died, plus she's scared that I'm gonna have one and like fall out of the seat or something (THAT'S WHY THEY HAVE SEATBELTS AND SAFETY BARS, MOM). My parents even have to be home when I take a shower because they think I'm gonna have one and drown in the bathroom. They freak out if I take even like over 8 minutes. And recently I am in honors physics and we had to do this lab where we used a motion sensor. Well, I wasn't really thinking about my epilepsy (because, honestly, I try to forget about it) and there was a flashing light on the sensor that I didn't really take much thought about. That wasn't good though because then all day I was having seizures; I probably missed half of what my teachers were saying, and according to my classmates when my teacher (who is super hard and everyone is failing his class) asked me to answer a question on a story we had read, I mumbled something and then they heard something like "You suck." I was completely and totally humiliated. Now my parents are fighting the school to have me changed into a class that won't use any of that new technology, but I like my teacher and I hear that the other one is hard, and trust me I have a hectic schedule and I don't need another hard teacher fit into it. My current physics teacher is nice and I like him, but my mom emailed practically every administrator at my school already. Another time we were going over the answers to our test in AP Euro and it was my turn to give the answer. Apparently I read the question and then just stopped talking, the teacher called my names a couple times, but I never once moved or talked. That was humiliating too. I hate this. I am always getting humiliated and even worse, I never know how or what I did to deserve the humiliation, until someone else tells me.

I am embarrassed about it, and therefore don't want to bring it up if I can help it. A couple of my friends know, but nobody understands it, especially because I don't have the flop on the floor kind. One is really understanding and willing to help in any way he possibly can, but I rarely get to see him. The others though are always giving me crap about it. They tell me that it's nothing and that I'm making too much of a deal about it; that I'm "milking it for all its worth". My mom got me a 504 plan, pretty much giving me all this special treatment in school if needed without labeling me as special-ed. But I am scared to use it because I don't want my teachers thinking that I'm just using it either.

I hate this so much and always just feel like running away, hiding under a rock, and crying all the time. It sucks because I have to be strong and okay all the time in public, and then when I get home and am in my room, all I do is cry silently, because I don't want my family knowing because then they embarrass me by making a big deal about it. Whenever I don't say anything my mom yells at me "WAS THAT A SEIZURE?!!!" I always say "No." just because I don't want to admit it, and because usually she does that in front of other people and it just is super embarrassing to me. I feel like I'm defective and useless, like there's something wrong with me, all the time. It makes me want to die. I HATE IT! I HATE IT! I HATE IT! Why me?
 
Boy your story sounds familiar

Welcome to the site epilepticloner. It's a cool place here, lots of people like myself that can relate to what you're saying. I hope you don't mind, I moved your post so that you can have your own thread in the foyer. That way everyone can say "hi" and/or answer your message.

When I was in high school I had similar problems. I didn't have many friends & the few that I did have weren't really the type of people I would have chosen first but they were still friends.

I have partial seizures & nobody clued in (except once) when I had a seizure. that was the last time I ever cared to talk to my "best friend". The rumours about me were mostly that I was always high on drugs which I'd never done at that point. I remember I stumbled once & someone pointed at me & yelled "he's stoned! Wouldn't be so bad but sadly our principal paid a lot of attention to rumours. Those got even worse when someone saw me taking my medications & went running to the principal. He refused to believe that they were medications & insisted they were "drugs" even though it was in my file that I took them at lunch every day.

I also got the same garbage from people, I was told I was faking it, others said it's just a matter of "mind over matter" & that I wasn't trying hard enough & some thought it was the same as being mentally challenged. I'd forgotten about all that until you mentioned how you're being treated :ponder:.

I've got to admit that even my parents weren't as scared about my seizures as I was, mind you I"d had them all my life so they could sort of get used to it but I do know that overprotective attitude. I'm 49 & I still have to deal with it.

Meanwhile make yourself at home, check out the site & see what we've got. We even have a "padded room" if ever you need to let off some steam.
 
I completely and utterly identify with you.

I have had seizures on and off since I was ten and finally (THANK GOD) have regained some control and haven't had a seizure since mid December 09.

I have had kids laugh, the stares, been ignored, been humiliated, fallen into trash cans (lol) walked into teachers desks, cried in class, had teacher not understand, unable to answer questions, missed a LOT of school, had to be driven everywhere - The Whole Nine Yards! I don't have the "flop on the floor" kind of seizure...and when I tried to explain what they were I would sometimes go into a seizure mid sentence and wake up w/ tears in my eyes due to both my seizures and I felt humiliated. It happened a lot. It will happen, but I lived.

It certainly is an adjustment and this place is heaven-sent. These people will always ALWAYS be there for you. :)

Now dealing with this is rough. You will gain friends who really care about you and you will help others grow because of epilepsy. What really truly helped me was going to a counselor and talking about it. It was a place where I could describe everything, write it out, talk about it if I wanted to and if I didn't I could talk to them about pop culture lol. This wasn't a school related counselor - but someone outside, private, where I wouldn't worry if they told other teachers. They didn't tell my parents either. It was private. It was amazing. I'm going to go back there to talk about a transition back into non-seizure life (knock on wood that this will last forever).

NOT to say teachers shouldn't be involved or notified of your condition. I tried to keep it secret and was yelled at once for having my bf walk me to class. (yes I dated --a football player to boot! for 3.5 years, even tho i was epileptic AND in band --it was the only extracurricular that didn't require my parents to be at every practice lol) ANYWAY I yelled back at my teacher and cried --he had no idea, but I didn't know how to handle telling everyone all the time. I learned that it was worth getting red-faced and a little emotional, instead of catching people off guard.

Things always get better, even when things seem really, really, REALLY bad and unacceptable... it WILL ALWAYS get better. :) It's okay to cry, it's okay to feel the way you do, but you will learn how to cope and move through your life with really special people. You can live as "normal" of a life as possible with epilepsy.

If you ever need to talk to someone WE are always here. If you want to chat on facebook, AIM, or e-mail. (i do keep in contact w/ a few people w/ epilepsy on fb-it's not weird! lol) I'll be here - as someone who recently graduated from high school and is now attending my first 2 years at college. Who has gone to parties and had a seizure! lol I've tried to live it all. Just lemme know :)

-God bless, AND that goes for everyone! I'm always here.

<3 jackie
 
I can identify with what your going through.
I've had seizures since I was 2 so I had them all through school.
When I get quiet ppl are always asking me if I'm ok.

I've never been controlled except for 8 -10months once 90-91.
other than that know other med can conttrol me and I'm always busting mt head open.


Belinda
 
Hi, and welcome to the site!

I hope your neurologist is aware of your continuing seizures and is trying to help you find a treatment that will work. High School is hard enough without having to deal with all the extra stress from Epilepsy. It sounds as if your friends, classmates, teachers, etc. could use some education about the different kinds of seizures, and what your symptoms and triggers are. Is there any way you could have your doctor prepare a letter with the info on it? You could keep copies to hand out. It might feel embarrassing, but it's better to have people know before anything happens, so they are less likely to pass judgement.

I agree with what jackie says above about seeing a counselor. It can make a huge difference to have someone listen and understand. And that's also one of the things this site is great for.

Good luck, we are here for you.

Best,
Nakamova
 
Thanks everybody!

Yeah, I'm in band, too. It's awesome. We have marching band though so it sucks when I can't remember my music or where I'm supposed to go on the field because of the side effects of my meds.

My family has been going to a counselor since I was in 2nd grade, and now that we know I have epilepsy he tries to help, but I don't feel like I can necessarily tell him everything just because he's known me forever. What I really want is someone who only knows what I tell them, and also doesn't counsel my parents and brother, too. But I'd never want to go see a counselor at my school either.

I just feel so concealed.
 
If the counselor knows your family as well as you for so long would s/he be the person to talk to about how overprotective your mom is? After all, if ever you move out she won't be there to check on you every time you take a shower.
 
Awww, honey

I do feel for you. Although I didn't have the same type of seizures when I was your age (back in the ages of the dinosaurs), :)

Have you considered sitting down with your mom and dad, and just flat out saying, "Look, I'm sorry this upsets you so much, but we all have to learn to deal with this. The way you are dealing with it is not helping me at all, and can we PLEASE come to some kind of a compromise? I know you don't mean to, but some of the things that you're doing embarrass me...."

Then, as a grown-up type of person, sit there and work it out with them. I know you're not quite yet, you're still a teenager, but E sometimes forces us to...act with more maturity and common sense than others, (even our own parents sometimes--I'm still going through this as a matter of fact). It is called BEING PROACTIVE FOR YOURSELF. It is NOT EASY by any means, but you do develop a backbone.

DO NOT mouth off to your parents though---they do deserve your respect. Please also try to remember it's not easy on them to try to watch what happens to you. It's hard on them because as parents they want to fix everything, and make everything just right for their child....even better than what they had it. And with E, they just can't do that. In other words, try to put yourself in their shoes, just for a little bit--it might make it easier for you when you go to talk to them. You can, I hope, at that point, say something like, "I can only IMAGINE how hard it is for you to watch and worry about this day after day after day, BUT....." and then go on. Does that make sense? I certainly hope so.

See, I speak from both sides of the fence, sort of. I am an E patient myself for, ahem, a number of decades now. On top of that, I have a high functioning autistic son who is almost deaf, and whose eyes are not great. So I can see where your parents are coming from, AND I can see where you are coming from.

Be sure to check out the Kitchen and the Library. There's lots of information there--it might be helpful to educate your parents more. And, perhaps changing your diet some would help to control your seizures. Not to lose weight, mind you....just to control them. Also, there is plenty of info about vitamins, too, which is something you might want to check out, and ask your doctors about. Hmmmm, that's another thing. You ARE old enough to speak up at the doctor's office, and ask questions--so start doing so, if you haven't already.

Keep an E journal, too. See if you can find your triggers. There's lots of things YOU can do to be PROACTIVE. Now you just need to do them.

If you have any questions, feel free to PM me. I will have to leave here in a while, but I will be back in a couple of hours...

Welcome to CWE, by the way. The screen name that you picked reminds me of how I felt when I was young, way back when.

Oh, one other thing. The Padded Room is really great for venting when you need it--trust me, we've all been there. Mr B, our host, has built us an AWESOME home here. So feel free to check things out, and kick your feet up. We'll be here for ya.

Take care.

Meetz
:rock:
 
Dear epilepticloner:

Greetings! This site will become near & dear to your heart. I agree with Nakamova: educate your classmates & teachers by presenting a science project about epilepsy. At least this is my suggestion. And, if your meds are making you too dizzy, sleepy, or crabby to stand up, then you're probably taking too much. Please let your neurologist know. FINALLY...tell your parents & family that you are NOT The Boy In The Plastic Bubble. Tell them you need your PRIVACY! It may be difficult for your parents to stop being your shadow 24/7, but you're 15 YEARS old, not 15 months old. 1 last suggestion: if there are any epilepsy support groups in your area, go to their meetings. If there aren't any, how about starting one? Take care! :-)
 
Epilepticloner- I started having seizures (complex partial, not flop on the floor ones) when I was 14, but didn't get diagnosed with epilepsy until I was 22. I went through high school having similar experiences to you, but without having the back up of a diagnosis. The teachers just thought I was a rude, ignorant nutter who ignored them half the time! It sucks, but having epilepsy myself, and also having an 11 year old daughter with epilepsy as well, I can see both your side of the story (god, will they stop smothering me, etc etc) but I can also see your parents side of it too, they just want to keep you safe and to try to protect you. The important thing to realise when you are talking to them about how overprotective they are being (and even as a parent, I do believe your parents are going a little bit OTT) is to remember that they are doing it with your best interests at heart, and to try and talk to them VERY calmly and grown-up about it all. It does suck not being able to drive, I will agree, and the other teens around you will hurt you by raving about it, but don't let it get you down. It is possible to live a happy and fulfilling life without a car, and think of the money you'll save on gas that you can spend on other stuff like clothes or makeup. I go on roller coasters and rides, as does my daughter, providing they don't have strobe lights in them. Don't know about the US, but in the UK rides MUST state if they have strobe lights in them. My seizures are not controlled either, but it doesn't mean the end of the world. I still do a lot of stuff and live a relatively normal life, i just act a little weird sometimes! So, my brain misfires, at least I have a reason for doing things differently, what's the rest of the world's excuse lol!
 
My daughters first seizure was at the age of 14. She is 17 now (counting the days until she is legally an adult). I have been very proactive in her care, and at first it appeared like it irritated her. However, after some great therapy, which continues, she and I have a great relationship. She doesn't really like to discuss the biological side of what is occuring or the details of the nutritional changes we have made. However she is a willing participant, which is a good thing. Every now and then she makes some bad choices, and sees the negative consequences. Her seizure threshold is improving, and as she goes longer and longer between seizures, she becomes more confident that she is being proactive and it works.

If your parents have access to a computer, you might let them know about all the support online. It is a great release, and allows some separation between the patient and the parent. You can be proactive and keep a journal of changes in your routine, etc. This will help with figuring out how to improve your seizure threshold. Work as a team.

Another thing that helps Rebecca and I. When there is too much emotion, sometimes an instant message conversation, or an email conversation works. You have to be careful what you say, but it keeps a lot of the drama out of the situation.
 
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