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[ceiliclare]

Hello everyone, my name is ceili and i'm really new to online communities so i apologize in advance for being awkward. I'm nervous but excited at the prospect of joining such a welcoming and informative group. I have had epilepsy all my life (TLE & grand mal or tonic/clonic seizures) though my dx as to what kind of e has always been debated. I've been mostly complacent about getting help partly due to the fact that epilepsy runs in my family-grandfather, father, uncle, sister, brother, 2 cousins all have it. My 10 year old son has been having various types of seizures, including three tonic/clonic since infancy. we all know he's got it, but his neurologist still isn't sure. Til now i've been ashamed and embarrassed by my condition (like most in my family-we don't talk about it much) but now i want to change for my sons sake, i think i must.

 

[Crazy Monkey]

Hiya

Welcome to CWE

You have come to the right place. Before I joined CWE, E was a no talk zone for me and I felt ashamed. Over the last few months thanks to this forum I am gradually coming out of my shell, I am beginning to open up to my friends, but I have given up talking to my family as seizures and my parents are not a good mix.

I am still easily embarrassed by my seizures, I don't think that part will ever go away as I hate people seeing me have seizures. Though like Bernard (our host) said to me once "I am finding peace with my situation"

I am sure you will find the support you are looking for here, everyone is very friendly and we all help each other.

Take care

 

[epileric]

Welcome ceiliclare

The people here are great. They're very supportive but there's some excellent information that I've gotten here as well.
My family has been very supportive and sympathetic of me re. my seizures but it is easy to feel alone. I think it must be great to have family that can empathize with you.

 

[skillefer]

Hi Ceili! Welcome to CWE. It's amazing how children can force us to rethink things isn't it.