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HOW CAN I HANDLE THIS BETTER?
Sun, 02/15/2004 - 10:44Hello, My friends call me blue :) I am epileptic. I started having seizures as a baby and stopped having them at 14....until the day at work when I was 27 when it started again out of nowhere. I am now 35 and take Tegretol XR every day to help battle the seizures. I am up to 1000 mg. a day of the Tegretol and still have the seizures. They are controlled a lot of the time but I continue to have days like this last Monday where I had three in one day. One of which was at work. I tend to feel very upset when the seizures happen and tend to withdraw emotionally from everyone around me. I think because I am a bit embarrased to have people see me so completely out of control. I am so emotionally spent after a seizure...let alone 3 in one day. The sore muscles, bruises and embarrasment. I get so frustrated with the illness and the fact that with the amount of medication I take my memory is almost completely gone. I won't remember what I did 20 minutes ago. I will tell my husband the same thing three or four times in one evening. He is very understanding and so patient and is always there to help me when I need him. I still feel so inadequate and I guess that now as an adult I am handling the epilesy worse than I handled it as a child. How do I get over the frustration of not being able to change this and how can I feel like a "normal" person instead of such a freak. I would love to get the chance to get to know others like me and any secrets they may have on handling epilepsy and not feeling so helpless. You may also reply to blues21@sbcglobal.net
Comments
RE: HOW CAN I HANDLE THIS BETTER?
Submitted by USMALE on Sun, 2004-02-15 - 10:44
TroubleCat,I wish I could take credit for the term. Unfortunately, however, I believe I picked it up while studying the Americans With Disabilities Act, or The Family and Medical Leave Act or labor cases brought under the acts. Before I learned the "facts of life" so to speak, And believed that there were laws that protected us from employment discrimination because we have Epilepsy, I was VERY active in my union. I guess what I'm saying in my long-winded manner is that if I remember correctly, it's a (forgive me) bureaucratic term. But, if I do remember correctly, knowing bureaucrats, they may have "borrowed" the term. LOL.Bubba
RE: HOW CAN I HANDLE THIS BETTER?
Submitted by EpilepsyDotComEditor on Wed, 2004-02-11 - 17:19
USMALE has some good advice. We at epilepsy.com don't like to say that a person is "an epileptic" --- you are just a person who happens to have epilepsy. It is only a small part of who you are. Keep exploring your treatment options. Read the "Living with Epilepsy" section of epilepsy.com and perhaps some good books. There's a list of them at http://www.epilepsy.com/epilepsy/epilepsy_books.htmlThe "Brainstorms" series, edited by Dr. Steven Schachter, may be particularly helpful if you want to get to know others with epilepsy.
RE: HOW CAN I HANDLE THIS BETTER?
Submitted by TroubleCat on Thu, 2004-02-12 - 16:36
Bubba,Thank you for the term "Hidden Disabilities"! I haven't heard that before. Did you coin that one yourself? It is nice to know other people experience the same thing. I have more than one illness. Back when I was in real bad shape from bi-polar disorder, I felt like having a t-shirt made that said something like "I have a mental illness. Don't expect me to be able to handle what you can." It was frustrating that people couldn't see my limitations like with a person in a wheel chair.My own warped sense of humor caused me to laugh when you assured Blue she wasn't crazy. Because I can't claim that same assurance for myself. I AM crazy! Certifiable, in fact. But even that is not the end of the world or one's life. Once we found the right meds and I started working in an artistic profession, I became merely "interestingly eccentric"and got my life back. And a very full life it was until this new problem started. Blue, I was saddened when I first read your question. Because with all my years of experience with debilitating illness and medications, I had no advice to offer you that didn't sound like a cliche. You would think it would be easier for me the second time around since I already know the drill, but I think I often struggle just as much emotionally as with my first illlness. I have the most wonderfully supportive husband and Jesus in my life. It doesn't get any better than that. Some days I am able to have joy in spite of my circumstances, other days I feel sadness, despair and frustration because I miss doing the things I love. On days I am experiencing physical pain or discomfort, I cry a lot. You wanted to know how to handle this better, but I have come to the conclusion that I can't handle this at all. Only God can. I find my comfort in remembering that He is in control of my life and always hears me even if I can't always hear Him.