*Long Post for #Epilepsy * I have idiopathic generalized epilepsy. This means I have tonic-clonic (grand mal) seizures for no discernible reason. Most people recognize this form of seizure (the classic falling on the ground convulsions you see in medical dramas). I also experience focal onset aware seizures (auras). During these I am fully conscious but start experiencing things. I may know we are having a conversation but become confused and not understand how to respond or forget what we were talking about. I lose focus and feel like I can’t look straight at anything. It’s more than just spacing out and these can happen on their own or before I have a tonic clonic seizure, which is what makes them so scary. I don’t know if it’ll lead to something bigger. Uncertainty is one of the scariest things about epilepsy. Why do some medications work for some people and not others? Will I have a break through today and my medication not suppress a seizure? Will I be driving, in a public place, or swimming when it happens? Why can some people drink alcohol and others not? How much stress will my body withstand today? Could I experience SUDEP (Sudden Unexpected Death in Epilepsy) at some point? How long will my muscles be sore? How long before my bitten tongue feels better and I can eat without pain? My drivers license was taken away for 6 months, how long can I rely on the gratitude of others to take me places? And the embarrassment. It SUCKS to wake up after a seizure. A girl at my high school started having seizures a year before me and everyone called her “Seizure Girl” (myself included! I’m sorry, Katie). When I started having them, I was terrified that I would get that moniker. Most of the time I try to forget it all because life would be unlivable. I’m lucky and my epilepsy is controlled well with meds (I still get the occasional aura). But I keep adventuring, but I always have to remember my limits. I’m pursuing a wildland fire career, but I know I’ll probably never be able to be a hotshot. Keeping up with Drs and Rxs with my mobile lifestyle is hard. But I won’t let it stop me. #rambleswithsara #endepilepsy #shareyourseizure #useourbrains #epilepsyawareness (at Black Canyon of the Gunnison National Park) https://www.instagram.com/p/Bpza5vWHPs1/?utm_source=ig_tumblr_share&igshid=639bk67np4of
