New here

[Want to be my self]

Hello

I have been on here for awhile in the back ground and thought i would say hello.

I have had Grand malls for about three years now I'm 48 years old and it has made me think about life in ways i never thought of.It has changed my life in regardes to income friends and the feelings of well,,, by what i have read you all under stand.My family and close friends are very supportive but it is the 90% of the friends that are very safe as to not haveing to deal with the what if this happens when i'm with him that is hard to deal with.

Yes who needs friends like this but we have done so much over the years and it,well it is getting old!

I have kept so much to my self as far as when,where and what happened just so i do not here the ,,you should have nots.

Again just saying hello and this felt good to say.

 

[epileric]

Welcome Want to be my self

I know how you feel. I've had seizures all my life though mostly partials & it's amazing to see how the majority of "friends" treat you. Watch out because employers, teachers & principals can have the same prejudices. I guess I'm lucky because that's always been my reality so there's nothing for me to get used to.

If you've been around for a while then you'll know how great the people are here when it comes to being supportive. I find just knowing that there's empathy out there is so much more helpful than sympathy.

Meanwhile, make yourself at home & check out the site. It's got lots of reference stuff that's just great, we even have a padded room if you need to vent to release some of your stresses.

 

[RobinN]

I want to say welcome to you, and glad that you decided to say hello.
It is my daughter who has had seizures, so I don't want to speak for her, as to how she has been treated. I have been an observer, and witnessed the bad behavior. Thankfully my daughter is rising above it, and finding supportive friends.

 

[Nakamova]

Welcome! Epilepsy certainly makes you appreciate the folks who make up our support networks doesn't it? For those who don't get it... well, you have to pick and choose your battles.

Are your seizures controlled right now, or are you still having grand mals (tonic-clonics)?

 

[Endless]

Hi, Want To Be Myself,

Hello back atcha! I'm glad you found us in the forum. There is a lot of support and help.

I know what you mean about friends. I was diagnosed about a year ago. Some friends want to know what I'm experiencing and how I am. Others not. I've dropped the ones who were not supportive. I'm looking for some new ones to fill the gap.

Even my family can't handle some of the wackier seizure descriptions. It's so outside of their thinking that they can't understand. I've quit telling them when I see or feel something that isn't there.

Some friends just don't know how to be supportive. One of my friends is pretty good if I tell her exactly what I need. Like, I really need someone to listen to me right now and not judge anything, just try to understand. Or, I really need a ride to do errands for about 3 hours today. Can you help? I was surprised how often she has said yes.

I'm so sorry you are going through all this. It can be pretty lonely and scary sometimes, too. Know we're here with you. <<<hug>>>

 

[Want to be my self]

Well it's nice to see you the responce i have gotten. My siezres are not under control. We all have wants and needs and if it was a perfect world it would be easy. I have done the siezure monitoring unit for three weaks and had many gran malls ect . They want to do surgury soon and i'm abit shy on this.

 

[Nakamova]

Definitely ask a lot of questions before trying surgery. It's a serious step, with mixed results -- it's helped some folks, others not so much. You might want to read about another member considering surgery on the thread below:

http://www.coping-with-epilepsy.com/forums/f41/update-looking-possible-brain-surgery-8030/