How do you do it? -Those without epilepsy

[valeriedl]

Sometimes I don't understand how those of you can handle seeing someone having seizures all the time?

My husband's videoed me a few times while having a seizure because I want see what I do. This last one I was laying on the bed on my side, arms and legs crunched in, wagging my hands, smacking my lips together and mumbling words (if that's what you want to call them). Could have been drooling on myself too?

He just acted like it was a normal day but I know I scared the crap out of the cat. She was sitting at the foot of the bed staring at me with her eyes wide open, froze not moving at all. The other one jumps on me so I won't move but he wasn't in the room at the time.

We do make jokes about things I do during my seizures, feels better to laugh than cry I always say. But I don't understand how you guys can watch someone do that all the time and act like it's just a normal day?

 

[arnie]

I've looked at a couple of YouTube videos of people having partial seizures, and I am sure glad I don't have to watch someone I love having even those, much less a tonic-clonic! I have often said that I think seizures are more scary for our friends and families than they are for us. I guess that epilepsy, especially poorly controlled epilepsy, sort of leaves a cloud hanging over everyone in the house, shadowing us all in slightly different ways. . .

 

[chmmr]

I think we do it because we have to, because we love whoever it is and we want to be there for them and help them however we can. In your case, you depend on your husband, in my case, my daughter depends on me. We do it because its what we have to do in order to help our loved ones get better/improve and lead as normal a life as possible. That doesn't mean it doesn't tear us apart inside, or worry us, it just means that many of us have trained ourselves on how to keep it together because that is what we have to do to best help you and go on with life

 

[Belinda5000]

I ask my husband once why he stayed with me when my seizures were really bad he said because you can't control them and I love you.
I think that's the answer they love us.



Belinda:agree:

 

[kirsten]

I've never seen a partial seizure but my ex used to describe them to me. Your post urged me to go look at one on youtube--I couldn't bear looking at a tonic clonic. Well, the one I saw was the same as those I have and I found it way too creepy to contemplate. It gave me a sick, sick feeling. I would rather spend my life in ignorance of that part of things, honestly. You have to consider that we go through plenty as epilepsy sufferers and we, too, might have friends with their own sort of disabilities who we can support and love. I have a friend who is completely blind. He can't see my seizures, can't help me, but I get to support him in the things he needs. Before he died, my mentor had cerebral palsy and he needed me to turn his pages, file his articles and help him eat. I think everyone has their own special needs. Ours is epilepsy. Others might have depression, addiction, mood disorders, learning problems, ad infinitum. We are not so different from the rest of the world. In fact, if you look at it on a universal level, with the general world population in mind, we are normal if that makes sense?

 

[Cint]

I used to do volunteer work with the Epilepsy Foundation, so I did witness plenty of seizures, CPs as well as TCs. What disturbed me the most was the little ones who would have the TC seizures. I felt for the whole family, the child, their parents, and siblings. So heartbreaking. But I did the volunteer work because I felt the need to do it. I thought that if my kids witnessed it, then I needed to, also.

And I am one who has suffered all of the above, also. I also felt for my own two kids (now grown) who witnessed their mother's seizures plenty of times growing up. Their dad was a pilot so often times we were on our own. Several times they saw their mom being taken away after 911 was called. I now ask them how they did it and they say, "Because you're our mom. We love you."

 

[motorbill66]

The only good part of a Grand Mal (good?) is that I'm "not there" while it happens. I NEVER want to see one of my own on video, though the University of Colorado Hospital has a few from my video EEG stay. I DO NOT want a copy

 

[JaneC]

Valerie, we do it because what else is there - freaking out isn't going to help - and because you are our loved ones. I will stay calm at the time and probably feel more affected by it later when the "crisis" is over. I have seen my father, my daughter and a stranger in the street have TCs and it is always distressing but at the same time I'm always reminding myself "this is abnormal electrical activity in the brain. Nothing more nothing less."

It's more the what-ifs than the seizures themselves that bother me. Like when my daughter said to me the other night, "I'm going for a shower. Can you come and check on me? I don't feel right." I'm now in one of my head injury panic phases. It'll pass.

 

[valeriedl]

Thanks JaneC!

I know my mom will get pretty nervous when I have a seizure but my grandma totally freaks out. They've both seen me have a ton of seizures and will try to talk me out of it, which they're not going to be able to do.

My dad and husband however will just sit there and let the seizure happen not going into any type of fit. When I come out of it they'll let me know that I've had a seizure. Maybe it's a guy thing?

Sometimes I'll loose a good bit of memory after the seizure. After my first one I lost almost 10 years of memory, I didn't even know who the guy was that I'd been dating for over a year when I had it. My husband has told me several times that his biggest fear is that's going to happen after one of the seizures that I have and I won't know who he is.

 

[sunflower]

I feel the same way, motor. I never want to know what I look like. Sometimes I ask my mom and she uses words to describe it, but I never want to see the actions. It's better for me to live in ignorance so I don't have to know what others see.

 

[sunflower]

valeriedl-
I can see where your husband is coming from. I am afraid for myself in the same way. With my memory suffering more and more I worry that one day I'll wake up and not remember anything.
I see that you had lost ten years after your first seizure. How did you deal with that?