March 1, 2009

Had Enough of E., Yet?

            I have been doing E. since I was 3 years old. I have been taking medications for at least that long. The auras, the convulsions, the unsteadiness, the memory problems, the weird dreams or no dreams, the chewed up mouth and tongue, the incontinence, have all left me wanting out.

            Then, when it remits, and I don’t have seizures for a long stretch, I think “Oh good! It’s finally gone!”… Well, not really, because it comes roaring back. And during the time it is in remission, I begin to anticipate it’s return.

            I have to say, I hate all of it! I have had enough of it!

            But, so what! It is with me for the rest of my life. So, I work on it, I work on the feelings I have about it. I try my best to settle down and realize that I could be much worse off…

            I hear and read comments from others, on other blogs, in other chat rooms, folks with E. who are fed up and want to take some decisive action to convince themselves they are don with E. and everything about it. I hear folks say they are just gonna quit their meds. Or, that they are gonna quit seeing the docs. Believe me, I really understand this, but, unfortunately

This is not the way it works.

            The consequences to stopping meds can be a return of seizures. If you stop seeing the docs, you will lose the continuity of care they provide you.

            Try something new: see a psychologist that deals with disability adjustment or behavior. This might be helpful. You will have to be prepared to teach the doc all you know about your condition, because they are not well schooled in our disorder, but it can help. They can help you get past the fear and despair perhaps.


        In the end, each of us knows we have to deal with E. We cannot escape it once we have it. But, we can work against it the best ways we know how. 


Linda said...

Paula! Thanks for posting this blog! I want out too! I recently moved and went to a new neurologist. Before examining me, she started wailing on me about pshyciatric seizures! My husband jumped on board, and I was left sitting there mortified! She hadn't even read the reports from my last three EEGs. She wanted to yank me off my Keppra by doubling up with Tegretol, then yanking out the Keppra. What a mess. It divided my family, destroyed my self-esteem, and now it's on my medical record with NO examination? I WANT OUT TOO! But I understand, and felt VERY comforted by your post. I just have to go back to the good doctor that ran all the tests, and realize that even with Keppra, I can help "control" my seizures, but not cure them. I'm not really convinced if my family wants the seizures to go away, or if they just want me to go away. It's very disheartening... but I'm hanging in there. Thanks for your courage to speak the things we are too afraid to speak ourselves....

Eric said...

Thank you for your insights!!!

It took many years, a lot of anger and mild alcoholism to get me to finally stop drinking and turn my negative into a positive - I now donate my time with the Epilepsy Foundation, both as a peer-to-peer support person, and also as a camp counselor.

I want out too, but know that I cannot. While unhappy with how my illness affects me, I am actually comfortable with my situation, and as an activist and educator. I freely explain what I know with my co-workers and family and neighbors.

Thanks for your blog!! I'm a big fan!!!