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What do I do

Thu, 02/07/2019 - 12:07
I'm 34 years old. I have medically-refractory bi-temporal epilepsy, Confirmed by a invasive EEG. I take Lamotrigine and Topamax. But it only stops the Grand mals. Also need a sleeping pill Seroquel. If I stay away from lights, over stressing my mind and blood pressure I should be okay. I have to share this with you guys.... I was going to try yoga just for light exercise. I had a petit mal and they kicked me out because they scared them. It was funny I ruined their Zen. I make a funny coughing noise or a laugh. I'm 6ft 3 so it's understandable that I might have shocked them a little. But I have a medical alert bracelet on. I enjoy music, watching movies, going on walks. I have even started playing the guitar again. I've tried some volunteering it's difficult getting around in Sacramento the bus system sucks. I make do. I don't mean to come on here and complain.... anybody got any ideas what do they expect us to do we don't drive. Some of those don't work, me. But for good reasons. I just feel like my life is constipated I'm only 34. I'm not old enough to be retired and I don't make enough to enjoy retirement.... life is weird when you have a lot of time on your hands, And you're not putting it to good work.

Comments

So one of the biggest

Submitted by Jazz101 on Thu, 2019-02-07 - 19:59
So one of the biggest challenge for anyone with Epilepsy is how concerned we become about how others may feel about our diagnosis. As a result, when that becomes governing, well, it pretty much calls the shots in so many of our decisions. It's sort of like a when you're playing a game of cards. When you pick up your initial set of cards and they look like they suck, well, we immediately feel like the other person/s will beat us. But little do we know is that their initial hand also probably sucks. We're just a bit too caught up in how ours sucks.The fact is, life is about coming to terms with reality such that we are able to adjust to the best of our ability versus allowing everything or everyone to govern how we see and feel about ourselves. It's a challenge. After all, hey, we were in school where we got caught up in our grades. But grades tell of only a fraction of who you are. How practical and to some extent indifferent we are, makes a difference.Just as neurology has proven what Epilepsy is, simply unusual neurological activity, similarly neurology has also proven that humans carry various emotions that can range from love to hate; smarts to stupidity. So the question we have to ask is; "Are we allowing others to define us all because of a neurological diagnosis"? Many without Epilepsy face challenges in other areas. It's just that because the challenges seem so "often heard of" then it may not seem so challenging.The real world can, at times hit us like a ton of bricks given so little is known about Epilepsy. Not just that, but Epilepsy has a history of overwhelmingly ridiculous perceptions, perceptions with no merit.So it all comes down to how we define ourselves. Do we do so by irrational arguments and feelings others may possess? Or do we try to balance that with the reality of what our diagnosis is--simply a neurological condition?One of my professors, who I met by accident at a board meeting when I was in college, opened my eyes then to the reality of how to take on things. When I told him about how the medication and the seizures were affecting my memory, hence my grades, he asked me whether I have heard about a "Harvard C." I paused and laughed and then said; "Can you clarify?"He reminded me that at the end of the day many can either gain or lose from how they perceive themselves. Because society takes part so much in branding, we fail to realize how much it can influence us. Back to the "Harvard C." A Harvard student can be boosted regardless of his or her grades simply because of how "Harvard University" is perceived.Similarly, any individual with Epilepsy can pretty much cut themselves short because we get caught up in how others perceive it. Just as the guys who flunked at Harvard can still walk away with confidence all because of perception, similarly someone with Epilepsy can really sell themselves short all because of how unknown and badly interpreted this neurological condition is.Sure Epilepsy is annoying. I know that. It made my college grades dive pretty deep. But because my professor helped me to contextualize everything, I didn't leave college feeling like a failure. Neither would I allow others to make me feel I am all because of my diagnosis.My advice? Ask yourself fi you are being too concerned about how others may perceive you because of your diagnosis. And if the answer is yes, then ask why? The situation you laid out is real and understandable. The annoyance of the bus. Hey, I get that. That is why I prefer the trains here in New York City, even though that also isn't fun. But New Yorkers pay little attention to each other on the train. Busses are more personal. I think it's good that you are getting back into some of your guitar. Music is my middle name although I cannot play a single instrument. :)I think it's good that you are tossing out how you feel jb. That's always the start. No reason to feel like you are complaining. It is your reality so no one here will judge you on that. That said, my advice to you is to reassess how you feel about yourself and why. I was lucky to meet with a professor in my college days who helped reassess myself then. As a result, I am not so particular about how others may feel about my diagnosis. When I question myself I usually try to dig deeper to make sure I am not selling myself short. Yes I have Epilepsy, just like the 3.4 million plus others in the United States. I am willing to speak more about it versus feeling like I have to hide it. Don't get me wrong, I don't go around with a sign. But I sure try my best to make sure it's not governing many of my decisions. People are people. We can't change them all. But what we can do it make sure they aren't successful at making us feel any less. Those are more biblical days. Luckily we are past that time. Best Regards

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