I am overwhelmed

[super]

Thought living with epilepsy all my life was something never to be discussed, how lonely I have been fighting it all on my own for so many years.

[tinasmom]

Welcome Super, glad you are here. I didn't know that these forums even existed until I was doing research on Sudden Unexplained Death in Epilepsy. You are not alone and everyone here is so wonderful.

[Bernard]

Hi super, welcome to the forum.

[RobinN]

Hi Super - Welcome
The internet has been a lifesaver for me. I can not even imagine if I were to do half of the research in the library.
We are all holding hands here to find a better way... I believe there must be one.
So glad you found us.

[Birdbomb]

Thought living with epilepsy all my life was something never to be discussed, how lonely I have been fighting it all on my own for so many years.

Welcome Super

Yes it DOES feel like a lonely lifestyle, but when you open up to others, you will be surprised at how may OTHERS live in the same quite world.


I have a T-Shirt with the site's name on it

You would not believe the responses I get in it. People from all walks of life begin to tell you of their experiances and relitives with epiulepsy.

Education is the key.

[alivenwell]

Welcome! As you can see, we don't hold back on our frustrations, experiences and successes. Epilepsy probably has made you more unique than the vast majority of people. And, that isn't a bad thing at all.
I personally find this site very supportive. I really need laughter as a therapeutic method of coping with this condition, and I exercise regularly to cope with the stress.
Five years ago, a really smart active dog came to my house from the pound and she was the best investment I ever made in my life. We play a lot. We hang out a lot together, we eat together and we take regular walks. All of this has helped me cope with stress- my biggest factor with this disorder. I've been on medications all my life, but I honestly found the most control over the epilepsy when I controlled my stress.

[Meetz1064]

Talk all you want! We'll listen, and help. And you'll become stronger for it. Ep is a pain in the arse. That's true. But only as much as you let it be.

Take care,

Meetz

[spinnymommy]

Hi Super and welcome

I've found friends on line who actually understand what it is like to live with this. This group is full of very supportive friendly and knowledgeable people.

Personally, I'm not much good in the knowledge dept,
but I try to be supportive and friendly!

I look forward to getting to know you. Welcome.

[skillefer]

Hi Super! Welcome to the CWE forum I know what you mean... But welcome, feel free to pull up a chair and talk. Most of us don't bite...at least not hard. More like a nibble.

[brain]

Super

Welcome to CWE! I understand
completely the sense of being
overwhelmed. But browse around
and you can learn a lot here!

[latwife]

i have only been looking at the forums for a few days and have gotten more understanding and knowledge of this disease than i have gotten in a year. welcome!!!! i don't know much about epilepsy but i have a listening ear. feel free to use it.

[super]

Hi Spinny

Thanks you for taking the time to posting the message.
We all have a story to tell, and I find that verbalising my thoughts and sharing them is of great benefit. Previously I have tended to keep things to myself which in some ways is OK, but it appears there is support I never knew about, and there are people out there who have had similar experiences.
I also get a sense that rather than focus on one's own situation, there is direct benefit achieved in wanting to help others. I got that from your message which I am impressed. Once again thank you.
I have just come back from hospital after an MRI scan, never had one before, and a little interested in knowing the results. EEG in two weeks where your head is gooed up and electrodes strategically placed on different parts of the head, had that twice before.

Cheerio for now

[Tiara]

hey super. i think most people here understand most of what you are going through. for the first six months or so after being diagnosed i didnt talk about my feelings. i pushed myself away from everyone. i have been extremely lonely also. i have been getting pushed farther and farther into deppresion. keep your head up we are all here to help.

[super]

Hi Tiara
Family and friends really do not understand what it is like to have epilepsy, as much as some try, never will they be able to understand the isolation it can bring.
My comments "I am overwhelmed" reflected my thoughts when able to see the opportunities for self expression on this wonderful site. No guilt, and not having to explain to someone else and anticipate their thought processes. I say this not wanting to focus on one self and not feeling a lesser person for it. I am sure you know what I mean.
All my life there has always been that self doubt and it has been great therapy having that support that was never close at hand in times of crisis.

[keyna]

I don't want to sound like a downer, but epilepsy is hard Super is right family and friends don't understand what it's like, they try, but it is really isollating. In a matter of 5yrs I've practically become a prisoner in my own house. I can't work, or drive, I don't really get to see my friends anymore. Then I feel guilty for feeling bad.

[alivenwell]

Keyna, I didn't drive for a really really long time. I walked everywhere and found walking to be a great stress buster.

I'm half tempted to take public transportation everywhere and save on the high gas prices, and walk everywhere. I may re-enter all those taxi numbers into my new cell phone tomorrow.

My parents grew up with extensive public transportation. I suspect that it's simply a matter of time until we get that infrastructure back again because of global warming, high gas prices, overcrowded roadways and way, way too many jerks on the road.
I actually look forward to the day when that happens.

Driving does have an invisible price. Because my E is well controlled, it's so easy for others to forget about it. I cannot forget it. I cannot stop meds. I've had one person really expect a lot more from me since I started to drive. I've had another person treat me very carefully with kid gloves to the point that it's sickening. And, I've seen people say and do some downright rude stuff. And, there are the ones who just seem to go with the flow and accept my epilepsy, well controlled or not well controlled. It's so hard to predict reactions sometimes. I just try to take the punches when they come and keep my defenses up.

Hopefully, you'll meet somebody willing to come to your house or at least take you out.
We'll always be there in mind but not in body.