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Mel hates JME

How do you cope, how do you let it not consume your life?

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I've been having seizures for apparently years now, but found out when I had my first grand mal in July, at first I didn't really understand how serious it was, and just thought my mom was being overprotective(My curfew was earlier, I had to check in more, she always had to know where I was) But as soon as the doctor said that I had it, it kinda hit me this is long term, and the new medicines, and just coping have been making me just vulnerable and upset, apparently I might have developed a panic disorder as well? I still hope that I will walk in and they will tell me I am normal, but I know that it won't happen, and even if it did, I've let it consume me... I have started avoiding people, become more angry, and just so isolated, I've talked to my friends about it, they say it gets easier, things will be different, but they are just guessing, they know as much as I do, and I know close to nothing, some of my friends have reacted negatively, which broke my heart, I've spent the last two years of my life trying to get it together, and now I've locked myself up again.. I go out, but I can't run, I am too spacey, and I have to act happy which makes more irritable, I'm just not stable, and I don't find it fair to be around the people I love and make them watch this, I dunno, I thought one of my best friends died today, and I realized how much this is affecting me, why did this have to happen, I'm 15, life has just begun yet I get to start my day at 6:30 EVERY morning so I can take my medicine, I get to ditch my friends if I am invited or am up to going out at 6:30 PM to take more, I dunno I tried to pull this whole thing off as cool with my friends, but I'm just so alone right now its so hard, I don't have that right to bring this on my friends, yet I continue to because I can't be alone, they are trying hard to help me, but the more they do, the more it hurts

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Re: How do you cope, how do you let it not consume your life?

turn on accepting e-mails in your profile so we can chat

Re: How do you cope, how do you let it not consume your life?

One thing I did as a teen who had to take medication was carry a small bottle with a couple doses in it with me where ever I went. That way I didn't have to ditch my friends or just go home. You might ask your mom if you could do that. You could even agree to call her and tell her you have taken your medication.

Re: Re: How do you cope, how do you let it not consume your life

I already take it with me, but I really can't concentrate on the conversation, I'm taking likee 5-7 pills a night =/

im 14. i just live day by

im 14. i just live day by day. i have had E since i was 8.... meds have been part of my life. mabey instead of leaving where ever u r to take meds at 6:30 buy a little medicine holder, put the meds in there, and bring a purse with you. it always works. i read the last post and saw that u said it didnt work. if u have a cell phone then set the alarm on it so u will know its time to take your meds. if you dont have a cell ask your parents to buy u a watch with an alarm clock on it.

i swim competivitly and play water polo. yet, the one thing i have not done- is tell my friends--even the closests ones. they know i take meds but for some reason i dont tell them. i love my friends but i am too chicken to tell them. i admire you for being so open with your friends.

i just live day by day and live life to the fullest. i too also have mini panic attacks when i dont know what is going on or feel overwhelemed. if u ever wanna talk feel free to email me. i check it many times a day.

hope all is well,
davi :o)

Re: How do you cope, how do you let it not consume your life?

I'm 15 too and I've been having seizures since i was 5. You basicly just have to go on with your life. If some of your friends reacted negatively then are they really your friends? Your true friends will see you no different cause you aren't any different than before, you're the same person. You may not be able to do some things but sometimes these things happen and you just have to go on living your life. Teachers may freak out if you have a seizure and taking the pills may be a pain but if the pills help is it worth while in the long run. I have to take 17/18 pills a day and I've been doing so since i was little. This is just a new challenge to over come. And your not alone, theres lots of other kids out there with the same thing. Trying going to an epilepsy teen support group. I've started going and it helps just to hang our with kids that know what your going through. Hopes this helps, if not then sorry it doesn't.