been told basicially to give up on getting 100% by a forum

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Belinda5000

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This is what I was told in another forum and I won't do it. I was told to jut ac days,weeks , months and years I've had seizure free .Now years that is funny had years I've never had years this has been my life . I might go months at most seizure free but to say you have won I won't say.
 
I don't think anyone should tell anyone else that they should "give up". Everyone's situation with epilepsy is different. It's one thing to offer suggestions and advice, but no one should tell you what to think or believe.
 
This is what I was told in another forum and I won't do it. I was told to jut ac days,weeks , months and years I've had seizure free .Now years that is funny had years I've never had years this has been my life . I might go months at most seizure free but to say you have won I won't say.


Nak, thanks I appreciate i was beginning to think I was selfish for wanting to see more than 41/2 of my entire life being seizure free
Belinda
 
You are not selfish at all. We all want to be seizure free. That is only natural.

:hugs:
 
That is incredible, actually unbelievable how anybody could say such a thing to a person is not right, its very wrong. You keep fighting.
 
Some people seem to think I should be happy when I go what's a long time for me, which was 4 1/2 months at one time and they don't understand why I get upset or depressed when my seizures start back up because they have never been there.They have never had one seizure in there life.:noevil::agree:::twocents:
 
Belinda5000

I am with you on this one, you never give in or up. As if you could be happy with that.
 
I can see how some well meaning but clueless person might tell you to be happy about the small successes like X# months seizure free and to not stress yourself out about the setbacks too much because that only boosts your cortisol. But to tell you to give up? No, I don't want to be a part of that forum. (Which one was it , BTW?)

And Belinda, I just want to say that I love hearing such fighting "never say die" spirit from you. You could add another letter to your sig. E for Envision a new solution.
 
If other people want to give up that's fine I've almost done it to many times, and I'm just determined to stick to it.
 
I almost became the forum leader of the epilepsy site years ago.
:twocents:
 
People come in many flavors. Even really nice people sometimes say some not so nice things. I'm sorry to hear that someone upset you with a negative comment, but I would suggest that you not castigate an entire forum community for the actions of a single individual (unless the entire forum community is supporting that comment). We have forum members that can be angry, depressed, abrasive, etc. too and it can be trying at times to maintain the friendly, supportive dinner party atmosphere that we foster here at CWE.

That said, congrats on your 4.5 month run. I'm aware of your seizure history (at least, what you have posted about over the years here on CWE and on some other forums) and know that is a pretty good run for you. I hope you keep setting new records. :)
 
I had been on a few different epilepsy forums before I found CWE and hated them.

If you posted something you almost never got an answer. If you did get an answer the first few ones would pertain to what you posted then they would trail off onto about something else not even related to epilepsy.

I'd even get answers at times that were basically "Go f*** yourself! My epilepsy is worse than yours!!!!"

I'm so glad that I found CWE it is the best website that I've ever been on!
 
wow...that's terrible! Not one time have I EVER felt like we were all "competing" against eachother on here for "attention' and sympathy for our epilepsy....we all get the support we need exactly when we need it without feeling like we are begging for attention, or having to present some sympathy case each time we need to vent a long day, a bad day, a day of horrible seizures, etc...such a wonderful group of people...and great website...:-)
 
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