Just ignore me and I will go away

[bighealey]

Friends and co-workers now avoid me. My wife won't sleep with me and treats me like I am about to break or seize at any moment. This condition has scared my friends off. I am at work and no one will give me a task..................screw it all

I don't think I will ever get "IT" back. I think my old life is gone.

So my lot is to stay in the corner and not seize out......

...........................screw it all...........................there I go getting all whiny again..........when other have it way worse...................maybe I am just a selfish mean old man.........maybe a hundred cats and some funny slippers are in my future............damn damn damn.....screw it all

 

[notime]

Your friends aren't wanting any contact because of you having epilepsy? I read your profile and you only have had two seizures? Why tell your friends? I think you should just keep it to yourself, and perhaps those people aren't really your friends if they're not willing to be around you just because of a medical problem.

People are ignorant of epilepsy, and even when you have it at least in my case I went undiagnosed for a long time because my father kept thinking it was just fainting or something I could get over.. When I was diagnosed, he kept coming up with garbage an denying it even though the EEG confirmed it. Once he told me it was because I didn't believe in god and that was the cause because, "god is punishing" me for not believing. Another time I had a seizure, I accidentally spilled a coke on my father's carpet since I live with him. I was still confused, and then I became aware he was complaining loudly outside at night, and he even threatened to kick me out and called my mother trying to get her to come and get me about 15 months after I had a seizure when I wasn't even aware of my surroundings!

I've ran into people in games that I play that I told them about epilepsy, and then they use insults such as helmet head and so forth... I just stopped telling anybody. My parents tells everybody they meet about my medical problem and it's embarrassing, I've argued with them for months to get them to stop. I suffer from depression, and I just don't tell them how harsh or tell my neurologist how harsh it is because my father must always be in the 'room' with all of my doctors. I have no other way to see doctors without my relatives, and actually the only time I can get alone is when I am at the dentist, figures...

It's not easy, and I understand your depression, you're not alone and just a recommendation don't tell anybody unless it's necessary. If you do, try to educate them about it.

 

[arnie]

Hi Big Healy! You are definitely a whiny, selfish old man! And you dress funny! And probably don't change your undershorts often enough!
Seriously, though, from a 56-yr-old man who has had epilepsy for over 30 years, the more comfortable you get with this stupid disorder the more comfortable others will be. You are still whoever you were before this diagnosis, and once you realize that, other people will have no choice but to go along with you. I guess I was lucky 'cuz I was diagnosed when I was still pretty young, so I had a chance to define myself as a person with epilepsy, and it's not ever made me uncomfortable, and other people have to deal with it, or screw 'em! It can be the same for you, my man! You can do it! Go for it! (and put on a pair of clean shorts, for god's sake!)

Onward and upward!

 

[bighealey]

Thanks. I should have never told anyone. I actually change my shorts more often than before. My mother used to say "keep clean under wear so if you have to go to the hospital they will be clean"

laughing helps a lot so Thanks Arnie and notime.

 

[N Sperlo]

Your friends and co-workers don't understand. They will learn in time. I don't tell people at work. I am completely normal, and they see that. My friends don't completely understand, but I don't expect them to. They worry about video games and strobe-lights. I just laugh and tell them I'll be just fine. I have good friends.

I suggest a chat with the wife. You are no different from before. I punched and kicked bruising my wife's legs up bad. Slapped her in the face while we were sleeping. Talked about different beds before it was all ironed out. When it came to the T/C seizures, she never freaked out. Except for the first. She knew what to do. She took me for a walk after I woke up. Then it was right back to bed. My wife is a good example.

Keep your head up.

 

[Belinda5000]

bighealey,
If friends avoid you they awhere never really friends to begin with if you say it scared friends off, you findout who your true friends are when it comes to epilepsy.
Have you tried explaining it to your co workers, to tell them about your sz's.I've sat down with friends and explained what to do if I had a sz and told them what happens with my sz's and have brought them info.

 

[valeriedl]

I don't tell people that I have epilepsy unless it comes up in the conversation in some way. Two examples are why I don't work or why I don't drive.

Most of my friends are worried more about things that might cause me to have seizures like strobe lights for example. Once they see that I'm ok around them then they are all right.

My husband is one like your wife. It seems that he always got to tell people I have epilepsy. I've told him that everyone in the world doesn't need to know but for some reason it just doesn't seem to sink in.

How long have you had epilepsy? Sometimes it takes you and others a little time to understand what it's like. Once they see that you are normal hopefully things will go back to normal.

 

[MuayThaiFighter]

You aren't selfish and you aren't a broken person. If anything you're brave for expressing yourself. Get pissed and be frustrated as anyone deserves to dealing with any illness. Understand that people that are genuine won't deny you because of illness. I got lucky with some people in my life, and they never made me feel different. Once I couldn't be young and party, many "friends" vanished. But people here understand. And many more in your life do care, it can be really tough for people to buck up and show the empathy you need. Best of luck friend.

 

[kirsten]

An attitude worth cultivating:

When I Am An Old Woman I Shall Wear Purple
by Jenny Joseph

When I am an old woman I shall wear purple
With a red hat which doesn’t go, and doesn’t suit me.
And I shall spend my pension on brandy and summer gloves
And satin sandals, and say we’ve no money for butter.
I shall sit down on the pavement when I’m tired
And gobble up samples in shops and press alarm bells
And run my stick along the public railings
And make up for the sobriety of my youth.
I shall go out in my slippers in the rain
And pick flowers in other people’s gardens
And learn to spit.

You can wear terrible shirts and grow more fat
And eat three pounds of sausages at a go
Or only bread and pickle for a week
And hoard pens and pencils and beermats and things in boxes.

But now we must have clothes that keep us dry
And pay our rent and not swear in the street
And set a good example for the children.
We must have friends to dinner and read the papers.

But maybe I ought to practice a little now?
So people who know me are not too shocked and surprised
When suddenly I am old, and start to wear purple.

Seriously, though, I think your wife and your good friends will get over it soon enough. It's early on in the diagnosis, if I'm correct, and everyone is hypersensitive about the issue. Those who haven't run away entirely will probably need some time to adapt, just as you need time to adapt.

 

[Ruth]

I actually change my shorts more often than before. My mother used to say "keep clean under wear so if you have to go to the hospital they will be clean"

I wonder what it is about living in the bay area. I was born in CA in SF and my Mother was always telling me the same thing. In fact word for word. "Always wear clean underwear in case you have to be rushed to the hospital. "

I always have because I thought how embarrassing that would be!!

 

[AussieChris]

One thing I noticed is when others begin to avoid you, it is time for a shower or wash the clothes! Jk

Don't tell anybody anything if you can help it in public regarding sickness because it rarely works in your favour. The problem is people will formulate ideas on what you can and can't do and normally they aren't always qualified to do it (and usually have no idea with E) but given a little bit of information they will begin to try automatically and give you advice. This was a source of annoyance to me until I learned not to tell anybody anything if possible.

 

[knothing]

Your wife is scared or more like terrified out of love. My wife cannot say the word seizure still after 6 years of dealing with this and I understand why the word is hard to say for her. She had struggles at first and still does. I can still see her get a little terrified on occasion and trust me it took time but it was not understanding and love that made it hard to deal with.
It will take time but you have to talk to her.
As for others they can be worse, me I tell people and dare them to treat me different unless there is something wrong with me. I am brash so it fits me to be like that. I had no chance to hide it at work since there was a tonic-clonic at work. That might be why I don't care to hide.
It all takes time which really really REALLY stinks but people do come around. Hang in, it will get better!

 

[bighealey]

I have developed a freaky little twitch in my hand and a very slight nodding. When I notice it I can stop it but it sneaks up on me. I also have some staring or freezing up and then come back a moment later. My memory is getting really bad. This is getting weirder every day. Things are getting better with wife and friends, but I cannot remember the simplest things. I am hiding the twitching and shaking.

 

[N Sperlo]

Some twitching and/or shaking MAY be medicine. I have gained a few tics that I don't like and I try to hide. As for the nodding, is it possibly relative to drowsiness? Just a thought.

Memory has been a big issue. Today I was having trouble remembering the word "generator". When I'm talking, I may sometimes need help coming up with the words I am thinking of. That I KNOW Is medicine for me at least.

 

[Janus]

Memory is a big one for me. some friends helped me find words today after i gave many clues and descriptions. but now i can not remember which words they are. Did i say today yet?

 

[bighealey]

Thanks for sharing. I forget names and words also. I am a Project Manager and kept forgetting names and words when speaking to a very big and important rep this morning. Shite. At least it was not in a status meeting with a customer. Suppose much of this could be the meds as you suggest.

 

[kirsten]

This verbal memory thing is very, very common here at CWE. There are plenty of us. I'm one and I get how it is when you need to function professionally. I write for a living and I have trouble coming up with the most ridiculous words sometimes--obvious words like walk, talk, cat. I end up Googling a lot. The biggest issue, I suppose, is when I have to Skype with new clients. In that case, I'm a writer who can't string a sentence together, and who wants that? So I try to keep things to email only until I've worked with them a bit.

 

[Annicus]

BigHealey,

I say to live your life, tell who you want, if they don't try to understand then in my opinion they weren't a good friend, family will come around. Mine is still treating me like a fragile ceramic doll but I have to realize they do it because they care.

Epilepsy is like getting hit by a truck when you're diagnosed. A lot comes with it both good and bad. I learned who my true friends are, how strong I am yet how weak I am, and that I do have a brain which is nice since it's been debated...

 

[Penny]

Memory is a big one for me. some friends helped me find words today after i gave many clues and descriptions. but now i can not remember which words they are. Did i say today yet?

OMG! I have to do that a lot now. Not sure if its the seizures or stroke that caused them but its getting more frequent and frustrating!

 

[Janus]

Penny, I will be in wisconsin in 2 weeks. It is Green bay where my lover lives. I imagine it is a bit cooler than your place in Ill. unless you're right near Chicago. I find my self saying things like, "yes, yes, i totally agree with you. And what were we talking about again?"