The little things I can’t do bc of epilepsy start to add up

(Sorry this got long. 2:00am ranting)

Like many of you know, it really sucks that there’s a lot we can’t do because of epilepsy. I (24M) have been really lucky where I haven’t had a partial seizure in 1 year and a full onset seizure in 2 years. However I still have to take (just about) every caution because I start to get nervous I’ll end up having a seizure.

The big example right now has been swimming. I’ve been at my mom’s for the summer before going back to school, and she lives literally 1 street from the beach. Over the past 3.5 months all I have done is stick my feet in the water. I haven’t gone swimming in almost 2 years and while the beach is right there I can’t go swimming.

Another example is driving. This I’ve been ok taking the risk for because I have to for work and just getting around town. However, sometimes on the highway I get a little nervous I’m going to have a seizure and wreck (kind of PTSD from a bad wreck I was in unrelated to epilepsy). In a week I’m going to do a multi day trip halfway across the US to move for school. Rather than going alone, like I could normally, I’ll have my dad with me in case I have a seizure since it’ll be 8+ hour days.

Lastly here’s a silly one, stairs. Very rarely do I think about having a seizure going up and down stairs but when I do I think “my god I could easily die from this high up.”

I hope I haven’t sounded too whiny to those of you with worse epilepsy. I am very lucky my seizures are so rare and not weekly/daily/hourly like a lot of people. But I hope you understand why I needed to get this out.