I'm sorry to hear about your situation. I think it's like most things you can be empathetic but you can't truly understand unless it happens to you. I've had seizures for a long time but things changed. I had some memory loss 2 years ago - random events. I lost a job that I just got, had partial paralysis and some loss of muscle control. This lasted for 6 months and I never got an answer why it happened. They found a couple of brain lesions but couldn't say if that caused the problem or not. They said they looked fairly new so it may not be what causes my seizures since it sounded like I've had them for most of my life.
Some of the memory loss was important events and some not. It made me feel helpless and scared that it might happen again. So far it hasn't, the seizures have become very infrequent, and I am lucky that I mostly have simple partials and occasional partial complex. Even though things got better and I have a lot of supportive people in my life I still felt much the way you do.
What worked for me was that I decided I was going to do something that I have always wanted but was too scared to try. I took up belly dancing. I know it sounds like an odd choice but I did talk to my doctor, the instructor knows the situation, plus I am lucky that my seizures come with warnings so I have time to step away.
It did improve my muscle soreness and flexibility and made me feel like I do have power over some part of my life. I've been doing it since last October and thanks to encouragement from my instructor I did start dancing at public events with the rest of the group. If things change and I can't do this anymore, I'll just find something else and try that.
Maybe finding a way to try something you've always wanted to do will help you too.
Take care,
Christine
--- On Sat, 7/23/11, Kelly Porter <kellyporter@frontiernet.net> wrote:
From: Kelly Porter <kellyporter@frontiernet.net>
Subject: [epilepsy] over 5 yrs and still hurts (kind of a rant)
To: epilepsy@yahoogroups.com
Date: Saturday, July 23, 2011, 7:11 PM
For those of you who have been there, what made the difference for you?
Just time? I know it's not depression because I still do what I can do,
I just can't do what I want to do. I don't sleep more then I need, and
I still find joy in the things I love. I just can't shake this feeling
of hurt, almost like the grieving keeps on going and going and going and
going, and when something happens that reminds me of what I lost, It
hurts again, like the scar has never healed. I know logically that I am
not going to have the life I had, but it doesn't make it any easier when
I something happens that reminds me of that fact.
[Non-text portions of this message have been removed]
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