Epilepsy & Seizures Support Group

Hello owl4mom,

It has been reported that we only have 1-5 'close' friends in our lifetime. The rest are just 'acquaintances.' I have succeeded in finding 3. One of whom is just an 'internet' pal cuz I moved. :( Sure do miss her presence. :( Finding ppl who will care & support us is HARD, but, as w/ LOVE, there IS someone out there waiting to meet you. :)

Short term memory is hard on ALL of us. But, I will tell those who ask me such questions NOPE 'Brain Fart' w/ a smile on my face. Then explain about my Meds & Epilepsy side effects. :) If they don't wanna understand, well, they just ain't on my 'possible friend list' . I have my 2 'friends' & I'm STILL a hermit. :) We see each other on a weekly basis, but, they lead busy lives & I try to just 'go w/ the flow' when they aren't around.

One way to, maybe, break the ice is to plan a potluck supper. Invite those you find interesting. Be sure to have good music & just 'listen' to everyone. :)

Hope this helped some.

Love Candi

Hello owl4mom,
I've found that you can count the amont of "close friends" you have in your lifetime on one hand. It you have one or two you're rich, trust me. You don't want to know too many people because for some reason it always leads to trouble. Besides, it's really nice to have that one special friend who you can tell anything in the world without being judged. If you think about it, that person is probably already there, you just don't realize it.
As far as work, it's hard to remember things when you have a seizure disorder so try this. it's always good to write things down. Walk around with a tablet and a pen in your hand, and when someone asks you questions you can't answer write them down and say "_______ (Always make sure you use someone who is higher up on the chain than they are) just sent me an e-mail and needs to see me right away. It shouldn't take too long, and as soon as he's done then I'll get right back to you." Act like you're in a hurry, and the person with the request at that point will probably say "okay just let me know". You'll score double points because everyone will notice how efficient you are because you always have a pen and tablet handy so you're ready for anything, and will be so happy once you get back to them because they didn't expect to hear from you so fast. It works. Hope this helps! SBCGC

I go through this with family and trying to make friends, no friends either the friends bit think they will catch it or you are a burnen to them and the family thinks you have IQ of a 5yr old or less when I do not I can get into a cab or bus even train plus plane go any where travel or shop which I have never got lost even take care of my pets and my bills.

Hi Owl,

I know what you mean. I had a lot of friends and a pretty active social life but once I started having seizures a lot just backed off. Some of them even spread cruel rumors about me having some type of drug addiction which is why I am the way I am now. (I started having seizures Christmas day of last year.)

I don't really like going out all that much anymore because I feel bothersome or I feel like people are looking at me funny....and I also have this small fear of having a seizure in public and people freaking out.

I am lucky to have my boyfriend and some members of my family that understand. I think if you just have one close friend who understands then that is something to be held on to.

Maybe there is a seizure or epilepsy support group near you? I would look into it and I'm sure you can find some friends there. :)

Yes, I know what you mean about having one close friend. I do have one, but the problem is we only talk now from time to time on the phone. She moved to New Orleans a few years ago. I also hate telling her my problems so try when we do talk I just make the conversations about weather, husbands, things like that. I wish there was a group around me, but the closest one is a drive away. I should just do it and go there but hate going on the freeway that distance at that time of the night. I am so use to only driving around my area on surface streets. It is to bad there are not enough people around me that have epilepsy so I can set up one. Anyway, take care and thank you, at least we have friends here right? cindy

Hello Owl,

You hit the nail on the head. You will always find a friend, sometimes more then 1 on these support boards. :) It really does help to know you aren't alone & you are talking w/ ppl who have been there, done that.

Ya know, my GF & I were separated w/ nothing but the phone. She has been w/ me since B4 my diagnosis. 30+ yrs ago. When I started peri-meno my depression worsened. I would call her & talk w/ her for hrs, at least once or twice a week. We talked about my depression, then we would talk about everything & nothing. It was 'phone therapy' at it's best. She got me thru them mths. I had just found the support group on WebMD. They got me thru the rest. :) WHOOHOO for support groups!

HUGS! Keep talking to us. :) I'm listening. :)

Love Candi

This really concerns me because I have a 9 year old with epilepsy. His birthday party was today and he invited 5 children from school and only 1 showed up. There is the H1N1 flu going around so I hope that is the reason they didn't show up. He told me a few days ago that he thought that maybe nobody will show up. He has a learning disability and is on 2 medications. I hope he won't have this social problem in his life.

Mabou,

Happy (belated) Birthday! To you & your son HUGS! Mine just turned 21. :) He WAS sick & on anti-biotics on his B'Day. :(

I am sure you have heard of & 'practiced' early intervention. :) Some of the things I have read & recommended to other parents: Continue to treat your child as 'normal'. The EFA has a program where they will send an advocate to your son's school to inform students & staff about Epilepsy. They will not use your son as an example. :) OR you could organize a puppet show & teach kids he IS friends w/ :) Have you purchased any Epilepsy books for your son to read? They are out there. Written for ALL ages. :) Last, but not least, have you considered a 'summer camp' for Children w/ Epilepsy?

I would, also, like to recommend sleep overs or play dates, when/if the opportunity/timing is rite. :)

Depression, due to having Epilepsy &/or medications, does affect some of us. Know the warning signs & pay heed to them. :) Again "early intervention" is the key to helping him cope. Talk w/ his school counselor & teachers about this, too. If ya haven't already, that is. :)

Love Candi

Hi Mabou, your son and I have birthdays in November! I agree with Candi getting people to talk to him that are trained is a very good idea and the schools have very qualified people to do that. I also blame my medication for a lot of the problems that I have, being able to communicate with people, lack of self confidence etc. I am over 50 now too and wish I was young again so that I could just be around a lot of people like your son is now. Wish him a happy birthday for me, Cindy

Hello Owl,

Question?? NOT a reprimand. Did you misread my post or just forgot the content? :) :)

Why did I ask?? Cuz, SCHOOLS & staff, including school nurse/counselor, usually, have to be taught & trained
by EXPERTS. DRS &/or Advocates. And that usually only happens when a parent or student insist & set up the program. AND that only happens if there is an EFA w/in the area or that has the funds to send an advocate. Which is why I suggested she could set up her own 'puppet show'. :)

Owl, How long have you had Epilepsy? How long have you been taking meds? I agree that our AED's can mess w/ our memory. But, personally, I think the way you are 'raised' &/or educated about Epilepsy has more to do w/ self esteem/ Lack of confidence/communication.

If/when you let Epilepsy rule, then you have 'problems'. You are, in my mind, still 'living in the shadows'. It is said that we are never too old to learn something new, to change our ways. What do you/would you LIKE to do? Where can you go (besides work) to meet others? Bingo, bowling, etc.? It's all easier said then done. I know! But, where there is a will, there is a way. :)

Love Candi