dealing with social life

[recall92]

Hi was diagnosed about 2 months ago. I have complex partials. About 4-7 a week that last about 2 mins. Had my first tonic clonic about 2 months ago. Haven't had a tonic clonic since then. Medication have helped me recovery faster from the seizure but the number of seizures are about the same, 4-7. I just want to know what people have done to move on. I really avoid social life coz last thing I want is being out with friends then a seizure happens. I will be so embarrased. Last thing I want is to be at a party then a seizure occurs. I don't really wana tell anyone just worried about how they will react. My brother just told me to just take me meds and avoid social stuff untill I get my seizures under control. Thanx

[corsch]

Hi was diagnosed about 2 months ago. I have complex partials. About 4-7 a week that last about 2 mins. Had my first tonic clonic about 2 months ago. Haven't had a tonic clonic since then. Medication have helped me recovery faster from the seizure but the number of seizures are about the same, 4-7. I just want to know what people have done to move on. I really avoid social life coz last thing I want is being out with friends then a seizure happens. I will be so embarrased. Last thing I want is to be at a party then a seizure occurs. I don't really wana tell anyone just worried about how they will react. My brother just told me to just take me meds and avoid social stuff untill I get my seizures under control. Thanx

Honestly, I can't help all that much. I haven't had anything but support from friends, sure it is embarrassing when I have a myoclonic jerk (un-diagonosed so what ever it is that makes me jerk in my upper body) front of a group of friends but I also don't really let it effect me, I'll usually space out for a second then start jerking for a few seconds and then continue a conversation people are aware and I get odd stares but I'm not going to let it get in the way of me having fun so I think that you could weigh your options. If I were in your situation, I might tell a close friend that would probably be at the same social gatherings that you would be at, that way they would be able to tell people whats going on if you were to have a seizure and help you when you're seizing. This way people might be less worried and concerned, most people are scared because they don't know whats going on.

I do understand the social thing. When I had my seizure in march, I was terrified to go back to school because I didn't know what people would think. Luckily, I was blessed enough to have friends that don't really care, they just joke about it (which I'm fine with).

My mind is racing, so sorry if my post seams to take a different direction half way through.

[valeriedl]

If they are friends they will support you and won't be afraid to go out with you.

At first my friends were worried that they wouldn't know what to do if I had one with them. I explained what to do and that I had a list of phone numbers (my family and husband) and a list of my meds in my purse so that if something serious happened they would know what to do.

It does take a good bit to embarrass me so I'm not too worried about having one in public. I've had some before while I was out. Recently I was at the grocery store with my dad. He really didn't realize that I was having it untill I came out of it and couldn't figure out why I had all these stupid things in the buggy.

I also had a grand mal at a large yard sale. My husband said everyone just walked by and stared at me until the ambulance came. We laugh about it now. As I said, it takes alot to embarress me.

You just have to realize that you can't stay in your house and hide because you may have one at any time. You just need to realize that it may happen and learn to deal with it.

[epileric]

Something to remember is that if it's a partial seizure, the majority of people don't notice what just happened.

It's the tonic/clonic seizures that are a bit more obvious.

[recall92]

yeah hopefully i don't have a tonic clonic again. Only had 1 and it was about 2 and a half months ago. It's the complex partials im worried about. Coz I do this arm thing for a few secs and just stare into lala land for like up to 2 mins. Sometimes after that I go into sleep mode for like 20 secs and wake up and be like "What the heck just happened" Any way it happens 4-7 times a week. So there is a good chance it will happen in public if im out in public alot

[Zoofemme]

Staying cooped up isn't really healthy. Yes, it is embarrassing to have a sez in public and you get odd looks from people or the occasional total freakout but you have to ask yourself...do you want to stay inside all of the time? I've had a t/c in Wal-mart (HA! I gotta agree with everyone; there is something about wal-mart that just INVITES seizures to happen ). I was lucky and my husband was with me and he caught me before I hit the floor. He kept people away from me and wouldn't let them call an ambulance either so I wnet out on my own two feet. I also have sezs where I twitch a lot...my head goes to the right or my leg jumps...these are frequent. People probably stare at me but they have been going on so long that I don't notice anyore. My sezs also caused me to stutter BADLY for 4 years...that was the worse and people could be cruel about that one. It didn't stop me from talking though (there isn't much that can do that, lol) and I would still go out, order things in restarounts and what have you. My true friends accepted it and are still around to this day...all of the others fell by the way side.

I think it is more about you comeing to the point where you accept it than the others around you. Once you accept it than it really doesn't matter what others think.

[Ruth]

Hi Recall, glad to meet you.
I go out whenever I can!! I do not care if I have a seizure in public or not. My friends understand and that is all that matters.

We need the exercise and it is beautiful this time of year. Go outside and enjoy life!!

[matchu]

I do that while driving sometimes! absolutely scary!

[kyrissa]

I think that ZOOFEMME is right: going out is moving foward. It took me a while to come to terms with my diagnosis, and therefor go out with my friends. For me, going out helps me move on and enjoy life more.
I have had some seizures in public, but the friends that support are true friends.

[Ruth]

I think that ZOOFEMME is right: going out is moving foward. It took me a while to come to terms with my diagnosis, and therefor go out with my friends. For me, going out helps me move on and enjoy life more.
I have had some seizures in public, but the friends that support are true friends.

[seizingbeauty]

Hi Recall,
Welcome to the site. I have T/C's and yeah they can be embarrasing but don't stop living life on the fear of have a seizure. I learnt very quickly who my real friends were. They have supported me in every way possible. I have explained what to do in case of a seizure and for the most part my close friends have reacted well. Mostly we joke about my E, my screen name is a running joke with my friend/boss.
I know the idea of lossing control in public is scary but the benifits outweigh the risks by a long shot. There will always be some idiot out there but if you give people the chance to adjust you might be suprised at the support you can find.
Take your time, get use to dealing with all of this but remember you are more than your E!
Cat

[recall92]

Thank you so much! I think it's because I am new to this world but I will adjust Just gota accept it and not let it control me. So happy there is a place like this where people actually know what I experience. Thanks again

[JRuner]

I had my Pastor stop preaching and stare me down during a minute of repeated shaking with my eyes open, that really bothered me. He was just concerned but I told him to just keep going the next time unless I pass out because my wife is always with me and knows what to do. I just live my life (does not mean I like shaking in public) and I honestly get more questions about having eight fingers then I do about seizures.

John Runer

[Ruth]

I make people nervous at large gatherings when I start shaking. They are just concerned. My husband does not go but my son knows what to do. When I get bad, he calls my husband. We live only around the corner. My husband is there is 2 minutes. He takes me home.

What happened to your 2 fingers, John?

[JRuner]

The two fingers are missing from a birth defect caused by meds my mother took to keep from losing me in 1971-1972. Unfortunately they did not know all the side effects so I was born with short right arm an ulna that is not attached to my humerus at all, causing lack of palm up rotation and I have three fingers, thumb middle and ring. I still tried to join military as I was already an EMT but not eligible (because of the missing fingers alone.) Starting last year I have had to wear a metal hinge brace for any lifting so I don't pull the elbow apart.

John Runer

[Endless]

I have complex partials in public, but so far they are so subtle the only one that notices them is my mother. I just sit there and mumble to myself. The exception is a few times when I've apparently said some horrible things to people. I've warned my friends in advance. Others.... don't know what to do.

Right now I have no social life. I'm too tired. Too weepy from the meds. My friends call me and I'm up for that, but going out seems like way too much. My last try was lunch out, and after about an hour away from home I hit the wall and got horribly tired. Had to go home.

[C0urt]

The hardest part of the first 2-3 years was learning my limits after a life of racing and swimming and other stuff. Like most of the other people here, I had the support of close friends to pull me out of ditches and explain what was going on to the police.

My social life is limited, but I still make it a point to get out. No more bike racing, but it took me hitting a police car during a seizure to realize that finally. I still ride my bike of course, it is nice to have some feeling of indepence. I traveled solo across country a few months after I developed all this, that was an interesting experience. The best part of everything is to stay positive.

And there is a certain amount of risk entailed in life anyway. the epilepsy just makes it interesting.

[Ruth]

John, I am so sorry. I was born in 1943, so I know what happened. It was Thalidomide, the med. It was also for morning sickness. Your mother had no idea of the side effects. Nobody did, as far as I know.

You can sue the makers of Thalidomide and I hope you do. They are still using it, now they say it works for something else. Look it up on the Internet.

[drarvindr]

Thalidomide is used legitimately for leprosy ( not common in your part of the world , but rampant in mine). Nobody uses it in female patients so i haven't seen any phocomelias here. Also has uses in various forms of cancer along with chemo - again never used in female patients. The thalidomide disaster is a blotch on the pharma industry and will stain it permanently and deservedly.
Good luck suing the manufacturers of thalidomide , though. Chemical companies never pay. The bhopal gas tragedy in my country led to an amazing settlement of $2000 per person from the "wonderful" people at union carbide. The S.O.B. responsible went into hiding and hasn't been seen since.

[Ruth]

Hi Dr. Ramaswamy,

I am so happy that you are a doctor. Thank you for giving us the info about Thalidomide. Now, it is British Pretroleum's time to go hide in the sand. They are going to get a lot of lawsuits.

The Gulf Coast has had three major catastrophes, now. A lot of lives have been ruined in that area of the world. Also in Haiti, people gave a lot of money to their relief fund and about a billion dollars of it has not been spent for them. That money went into some people's pockets.