At first my family was afraid of me and my seizures because I tend to have very very violent ones. I have a lot of triggers such as ceiling fans, certain types of light, certain color patterns (especially if they're scrolling), too much visual stimuli (such as a busy eatery or warehouse store), movies (projectors in general), arcades, concerts, anywhere that has water during daytime (such as the beach). I also suffer from intense migraines, resulting in nausea, vomiting and moments of severe dizziness. I have a hard time with airplanes (I don't know, the altitude maybe).
Anyways, now my siblings and parents think I'm using my epilepsy as an excuse to not spend time with them. They WANT to go out as a family to dinner and a movie, but I'm too concerned about triggering a seizure. They want to go on family vacations, but I am now afraid to fly. My brother and friends want to go to the beach during the day. I can't drive, so I always have to irritate them for a ride anywhere that a bus / train can't take me. On occasion, I have to stay home from work because my head hurts too much or I had a nocturnal seizure and dislocated a shoulder (they think it's just an excuse to stay at home).
A few weeks ago my little brother got extremely mad at me because I refused to go to a restaurant that has an arcade in it. It was his birthday, so he was extra angry at me. Said I "Ruined his birthday"
At my sister's college graduation, some camera flashes made me have a seizure where I lost consciousness for a long time. I eventually came to, but was still really out of it (a drooling mess). Instead of taking me to a hospital or laying me on a bed, they put me in a wheel chair and took me to brunch with my sister's friends.
My sister and mom were mad because I "Ruined her graduation." I was even denied to go to my close cousin's wedding so they don't have to deal with a repeat scenario.
None of my family members know much about epilepsy aside from causing convulsions, so they don't understand the many other types of seizures. This results in them thinking I'm abusing drugs (it's also what they tell everybody).
Sorry about the long rant, but I just needed to get that out of my system. Does anyone else have such problems with their friends and family?
Anyways, now my siblings and parents think I'm using my epilepsy as an excuse to not spend time with them. They WANT to go out as a family to dinner and a movie, but I'm too concerned about triggering a seizure. They want to go on family vacations, but I am now afraid to fly. My brother and friends want to go to the beach during the day. I can't drive, so I always have to irritate them for a ride anywhere that a bus / train can't take me. On occasion, I have to stay home from work because my head hurts too much or I had a nocturnal seizure and dislocated a shoulder (they think it's just an excuse to stay at home).
A few weeks ago my little brother got extremely mad at me because I refused to go to a restaurant that has an arcade in it. It was his birthday, so he was extra angry at me. Said I "Ruined his birthday"
At my sister's college graduation, some camera flashes made me have a seizure where I lost consciousness for a long time. I eventually came to, but was still really out of it (a drooling mess). Instead of taking me to a hospital or laying me on a bed, they put me in a wheel chair and took me to brunch with my sister's friends.
My sister and mom were mad because I "Ruined her graduation." I was even denied to go to my close cousin's wedding so they don't have to deal with a repeat scenario.
None of my family members know much about epilepsy aside from causing convulsions, so they don't understand the many other types of seizures. This results in them thinking I'm abusing drugs (it's also what they tell everybody).
Sorry about the long rant, but I just needed to get that out of my system. Does anyone else have such problems with their friends and family?
but still my child.... contains info WE the family members can learn so much from.....it’s helped us lots..