Hello to all,
I have not been one to use this webpage too often. I frequently visit chats that is just to hear what others are saying.
I have had Epilepsy for almost 40 years. Mainly simple complex partials, absent seizures. I have been able to recognize when I have them from my auras. That however is changing I have found myself waking up on the floor and not knowing how I got there.
I have been through the ringer as it were. I cannot remember how many medicines I have been on. Probably a lot. Currently taking Dilantin & Keppra. My neurologist is not one I feel comfortable around. Does not have a good bedside manner, and any appt I have had he always indicates that I should have brain surgery. Never open to other options to offer.
My direct family are not ones that I believe can help. Mainly because they never ask, so I never offer to add. When I'm around them I stress out very much. Stress is a big trigger for some as I have seizures when I get very stressed out.
I also have come to find out that I was some embarrassment to my siblings when I had seizures. Basically they were embarrassed to be around me because of them. So we did not frequently do things together.
My mother was the one indicating to me about being the embarrassment to my siblings. So I do wonder if it has been an embarrassment to her as well.
I do try to reasonably speak with my parents on any topics for discussion but will frequently be bitter and tough to communicate with. That I belie've is from the Keppra rage as it were. If I were to say that I don't find my mother would endorse it and just say it would just be an excuse. More of how I meant they don't understand how this Epilepsy has impacted my life.
I don't have any direct friends and have high anxiety from the Keppra, but am comfortable to some degree with only having one seizure a month. I do need to try to expand.
Anything I do is always judged and looked at from my mother. She will not even allow me to get a dog. A dog would be very therapeutic for me to have around in so many ways. She is pretty much running my life and I feel I need to cut the cord. But is my main and only individuals(parents). That I associate with.
This in a tough state I am in right now. I was let go from my job recently. Which I have found was possibly due to impacts from my Epilepsy(anxiety levels).
I need some outreach on where I can go for help. I didn't find that Epilepsy is openly looked at in a fair way like say for instance. Being an alcoholic. Support groups are just few and far between. The website is one that I come to for releasing anger but tend to not want to do that so.i am not a bother.
I would appreciate anybody's thoughts.
Thank you for listening.
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