Almost 8 years now...

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Hello folks, names Andrew, 22 years old, I was diagnosed with Juvenile Myoclonic Epilepsy when I was 15 after having a seizure in the shower. Since then I've had countless seizures and injuries to accompany them. Started on 10mg of Lamictal and today take 500. I've never met another epileptic in real life outside of this one epilepsy support group I went to which ended up being pretty much just adults. They were all super welcoming and friendly and everything, but being there, seeing how some of these beautiful and wonderful people had to live their lives, did scare me slightly...

Anyways, I'm here because I'm sick of feeling alone. I know I'm not, far from it in fact, but ever since my first episode I've felt like the only youth with epilepsy. I'm sure others were at the schools I've been to, but like me tried to cover it up and live a normal life. I like to think I've done pretty well in that respect, I currently work with a chiropractor as a licensed massage therapist and am very successful at what I do, but even the money and meeting and working with great people all day every day doesn't completely remove that loneliness. What's worse is I feel like this is the only place I can say something like this without being judged. Even some of my closest friends simply don't understand, try as they might....

My epilepsy is fairly well controlled, but I am completely dependent on my medication. If I miss just one dose, it's almost guaranteed I'll have a seizure the next day. I try my best not to - I really, really do, but sometimes I fail, and usually I don't realize it until it's too late. This was the case last Monday. Since then my left leg has a nice bruise, my left wrist/forearm are nicely scraped, the back of my head hurts to touch, can't sleep on my left side and I have barely been able to speak all week, living off soup and ice cream once a day.

I could write an essay, but I know I'm not alone, so I'm simply here looking for some kind souls who actually do understand. They know what it's like to chew the crap out of your tongue and how embarrassing it is when you work somewhere that requires constant communication. So I'll leave it at that, I plan on posting around and hopefully getting to know some of you, from what I've seen you seem like a great bunch and hopefully with your help I can find some semblance of reassurance. At this point in my life...I really need it. Thanks guys...

Andrew :roll:
 
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Hello Andrew:hello:

Welcome to CWE! Sorry to hear you're feeling alone. I think many of us feel that way at some time or other, and having friends who don't understand makes it worse, but it's probably harder when you are young. I'm middle aged-ish:rolleyes:, but there are many young people here, too. Believe me, you are not alone!

Hang in there!
 

Loopy Lou

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Hi there and welcome! I'm 25 and was diagnosed when I was 22. I also feel alone a lot too, I'm so glad to have this website!
 
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hi, and welcome :D
i felt the same, and im sure a lot of people did, i scoured the internet for ages trying to find a forum like this and im so glad i did! I've had epilepsy since i was about 9 and went undiagnosed until i was 19! And i know what you mean about the communication, i work in a residential home so i need to communicate clearly at all times, which sometimes feels like one hell of a chore, even though i havent had a seizure in over a year i get splitting headaches due to stress which has an odd effect on me! Anyway your not alone at all! Feel free to ask as many questions no matter how daft/intelligent or big/small, you wont be judged or anything of, everyone will just try to answer as best they can xx
 

Nakamova

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Hi Andrew, welcome to CWE!

I'm glad you've found us. This is a great community, and I hope you feel free to post and chat. Explore the different forums! You'll find places to vent or get a laugh if needed, and you can even talk about epilepsy if the mood strikes. :)

Best,
Nakamova
 
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Hi Andrew,

I totally understand feeling lonely. I was 15 when I was diagnosed. I am 25 now and finally realized how alone I actually feel. My husband had never seen me have a seizure until about three weeks ago when I had two seizures in one day. Needless to say, he is now much more understanding. I am happy to know that I am not the only one having some issues communicating with people. I have a tendency to forget names and specific words when I want them.

I hope you find that you are not alone here. I look forward to getting to know you and others on here.
 

CarrieH

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Hello Andrew and welcome to the club. Sometimes it is a lonely place to be, but we are not alone. I hope you continue to do well. Is there a cell phone app or something you can download to remind you to take your meds? I am 33 with 2 of the plastic medicine keepers so that I remember to take mine.
 
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Thanks again guys.

Carrie, I'm pretty good about it 99.9% of the time, but unfortunately I'm so sensitive to it all it takes is that .1%, no matter how long it's been. I think at this point I need to accept that it will probably happen again, maybe then I won't always be stressing about remembering to take it...or what's more often the case in THINKING I took it. I do use a weekly pill box so that helps, I guess I just need to learn my lesson again and again until it sticks.
 
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