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I was diagnosed with epilepsy when I was 27, 12 years ago.
I got "You can't/shouldn't do that" a lot in he beginning, I even said it to myself. We didn't know much about epilepsy then and really didn't know what I was able to do.
Now that we now more about epilepsy I get "Do you think it's ok for you to do that?" and it's usually only from my parents. When I'm told it I'll say "Well I'm going to do it and just see what happens". My husband pretty much never says it because he knows it's just going to be a 'try and see' thing'. There are times when I do say "I can't/shouldn't" if I defiantly know it's going to bring on a seizure but there are very very few things that do.
My family wouldn't let me do things that are the commonly heard things that would cause a seizure, flashing lights was one of the major ones. When I wound up near flashing lights one day they couldn't believe that I didn't have a seizure. This was when they started to ease up on things that people all always told that bring on seizures.
There were things that we weren't sure of me doing so we would call the neuro and ask him what his opinion of me doing it. His answer was always "I can't tell you if that's going to cause a seizure because everyone is different. It's just something that you will have to do 'if you want to' and see what happens." I always did what ever it was and luckily none of these things brought on a seizure.
I got "You can't/shouldn't do that" a lot in he beginning, I even said it to myself. We didn't know much about epilepsy then and really didn't know what I was able to do.
Now that we now more about epilepsy I get "Do you think it's ok for you to do that?" and it's usually only from my parents. When I'm told it I'll say "Well I'm going to do it and just see what happens". My husband pretty much never says it because he knows it's just going to be a 'try and see' thing'. There are times when I do say "I can't/shouldn't" if I defiantly know it's going to bring on a seizure but there are very very few things that do.
My family wouldn't let me do things that are the commonly heard things that would cause a seizure, flashing lights was one of the major ones. When I wound up near flashing lights one day they couldn't believe that I didn't have a seizure. This was when they started to ease up on things that people all always told that bring on seizures.
There were things that we weren't sure of me doing so we would call the neuro and ask him what his opinion of me doing it. His answer was always "I can't tell you if that's going to cause a seizure because everyone is different. It's just something that you will have to do 'if you want to' and see what happens." I always did what ever it was and luckily none of these things brought on a seizure.
