New to the group myself, can understand your situation. 37 yr old,
about 3 yrs post auto accident in which concussions left me with an
epilepsy dx. I tend to have about 1 major seizure per month. I
just moved to New Orleans to be near my family, so they can help
take care of me, thats been tough to admit, but what can I do. They
haven't been able to control the seizures yet. It's really tough at
this age to have this. I'm just 1 week post a major seizure,
recovering. With the tough economy, I had got a job, but this has
caused problems and I had to stop that job. Do computer
programming, and my mental focus, and memory problems that arise
from the seizures have proved too much for right now. Tried
Trilepital for almost 2 yrs, didn't stop seizures. Just started
trying Zonegran, 2 months now. Still having them, stronger
actuallty, with more side effects, but gotta find something that
works. Hope to get some good/useful info from this site, thank ya
folks.
Gary


--- In adultswithepilepsy@yahoogroups.com, "Julie Edson"
<jame11@p...> wrote:
> Hi,
> I can relate and sympathize with your situation. I am a 34yr old
single mom
> with a 7yr old living on our own.
> First your feelings are completely normal and just know that you
are not
> alone. I have been dealing with seizures since I was 13yrs old
after a head
> injury in gymnastics. I am still not totally controlled today and
have
> frustrating side effects.
> The thing in your email that made me write to you was your
obvious love and
> concern for your family and kids. I too feel as though I have
robbed my
> daughter of her childhood but have learned to realize that kids
are very
> resiliant and will adapt to any situation they are put in. My
daughter is a
> true blessing and I wouldn't know what to do without her.
> She knows exactly what to do when I have a seizure and who to call
and what
> to say. She stays in control (so they tell me) and is very
protective of me.
> Over the years I have had to explain to her that mommy "gets sick"
and once
> it's over mommy is fine again. She knows that when I fell I
injured my brain
> and it "stalls like the car" sometimes and then it starts again
fine.
> She has learned responsibility and compassion very early and has
had to
> mature quicker than I hoped but in the bigger picture I believe
she will
> benefit and be a better person from it.
>
> Just remember that your son is young and doesn't have the
capability to
> understand this yet. It might be a good idea to have your family
role play
> through a seizure and have you husband give him a "special job"
for him to
> do everytime instead of being frustrated and act out and lash out
at you.
> Use his language skills and focus on that what he has to do
is "help mommy"
> by doing the one special thing and tell him it is his "job". He
will then
> feel important and included instead of confused and scared.
>
> I have so much to share with you but don't want to overload you
so please
> email back if you would like to talk more.
> I hope I've been some help, take care.
> julie.
>
>
> -------Original Message-------
>
> From: adultswithepilepsy@yahoogroups.com
> Date: February 17, 2004 10:53:54 AM
> To: adultswithepilepsy@yahoogroups.com
> Subject: [Adults with Epilepsy] I am a new member
>
> I am a 30yr old wife and mother of 2 small children. I have had
Post
> Traumatic Seizure Disorder for nearly 3 years as a result of a
head
> injury. I have not been able to work or drive since my injury as
my
> seizures are still uncontrolled as of this point.
>
> I am having a hard time with guilt and loneliness.
>
> I feel guilty for the burden all of this places on my family. My
> loving husband has stood by my side and held my hand through all
of
> this. I know in some small way he resents me for my illness, even
> though he will never admit it. I hate the affect it has had on
our
> marriage, especially our intimacy. The worst part is the affect
on
> my children. My oldest child, who is 4, has had the hardest time
> with this. She often tries to take care of me and has even had to
> call my husband at work to come home, because I was having a
> seizure. She is a very sensitive child who often has terrible
night
> terrors that started after my accident. I know I have robbed part
of
> her childhood from her, and I do not know how to deal with that.
My
> son, who is 3, often gets angry with me. When I am having a
seizure
> he often hits, kicks and pinches me, from what I am told. Do not
get
> me wrong, my son is not a violent child. He is normally a very
> quiet, loving child.
>
> As I stated above, I also suffer from loneliness and depression.
> You see, I have always had a job, ever since the age of 14. And
now
> I do not have that. I have no friends here as my husband is in
the
> military and we are not from here. I am not able to set up
playdates
> or join groups of that sort as I can not drive. Sometimes I feel
so
> lost and alone. I have an extremely hard time accepting
limitations.
> It bothers me that there are things that I can no longer do,
> especially things with my children.
>
> I am wondering if there is anyone who could help me get through
> this. Someone who can teach me how to cope. It would be great to
> have someone to talk to about all of this.
>
>
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