Sorry how long this turned out, I just know most of you will understand
at least some of this.
It's been 6 years since I first noticed something was wrong and thought
I was sick. I had a career I loved and was excellent at, had been
married nearly 8 years, and my son was 4. December of 2005 I finally
got sick enough that I couldn't work. A few months later, May 2006, I
had surgery for my first neurological diagnosis, chiari. December of
2006 I had my first grand mal, and finally got a complete diagnosis, I
had been having complex partials for over a year. March 2008 I had my
RTL. I've been married nearly 14 years now, and my son is 10. I am
still hurt that my life was stripped away from me. I still cry now and
then because I lost the life I loved so much. Now, I can't work, my
emotions are a wreck, my memory sucks. People will tell me "wow you are
almost back to who you were before you got sick." Problem, I don't see
that, I am still missing a part of me, both literally and figuratively.
It is nearly impossible to explain to others, and I don't even think my
husband understands it. It doesn't help that trying to go off the
tripleptal didn't go so well, my pain level went up so it is obviously
giving me some amount of relief so I am going to stay on it. I'm going
to get to start driving, but it almost feels like a consultation prize
compared to what I was trying to get.
After this many years I thought I had accepted that I wasn't going to
get my old life back, but it just keeps haunting me. It's almost like
the old me died and got replaced by this version of me, and this version
isn't as good as the old one.
At times I have tried almost too hard and pushed myself too far in an
attempt to "be well", and I always suffer when I do. My husband has
never once said anything about me letting him down, or not being who he
married, but I feel like it's true. I get hurt too easily now, and I
react almost like I am mad rather then hurt. It's almost like I am
already hurt enough that any other hurt just sends me over the edge. I
don't think it is fair to him or to my son, but I don't know what to
do. I refuse to give up.
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.
Kelly
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