What Burdens Do You Carry?

My burden with epilepsy is even though I’ve had brain surgery and two implants I still have micro seizures.
It’s an uncertain feeling of will I have a seizure tonight?

I feel like a burden; especially to my 18yr old son. He has seen me have seizures and has told me that he has been trying to prepare himself( ffor a few years) for the day that he finds me dead. He has unfortunately watched my physical health decline for a long time. I hate that he has spent so much time worrying about me. I am beyond grateful for my son. But he deserves to feel less stress; especially over me. But he has saved my life more times than he even realizes. He will still ask if I have taken my meds, especially when I am getting a headache or migraine. I wish I could improve my physical & mental health. But this has been an uphill battle for a long time.

My burden’s with epilepsy are many. I am 66 years old and know that as I age the possibility that my seizures could lead to sudden death become higher & higher. I don’t like the fact that I need to take medication for the rest of my life because without it I will die before my time. I hate that my husband is angry because he has to take me to the ER or call an ambulance when I have two or more seizures within 5 min of each other. I am embarrassed when I have seizures in front of family members, friends, or strangers. I am humiliated when I lose control over my bladder &/or my bowels during my grand mal seizures. I get upset & confused when PA’s question wether or not I actually have epilepsy especially because my medical records clearly state that the EEG shows that my seizures start in my left frontal lobe & that numerous people including two Dr.’s & a nurse have witnessed them. I don’t like the pain & suffering that comes with the head injuries that I have endured when having seizures in public. The total lack of empathy, understanding, & education about epilepsy that so many people display is very concerning & upsetting. I don’t like or want anyone to have to take care of me but I know that I need someone too. I hate not being able to drive for 6 months of being seizure free each time I have a seizure. I don’t like being hospitalized several times per year because of my epilepsy. I miss being able to swim, take baths or do many other activities for 6 months after every seizure, & I don’t like scaring people who have never seen a seizure when I have one.

My seizures are well controlled, and I am so grateful for that; but my burden is because of that I have close family members who think "it's not a big deal" and that I'm a sympathy/attention seeker when I do talk about the issues of medication side effects, the rare, but frightening occasions I do land in the ER, and a myriad of other issues that come with living with epilepsy that, while maybe minor in a lot of ways, still affect my day-to-day life and have done so for 54 years. The burden of other people's lack of understanding about epilepsy is huge.