I’ve wanted to write about my epilepsy as a blog post for a while, but anything I draft feels too personal and I don’t think I’m ready to share my experiences in full with the internet. I do however feel comfortable writing about the gratitude I feel for my current health.
I am pretty open about being epileptic, and I have received quite a few messages inquiring about how I “beat epilepsy” or “got better”. Firstly, I have not “beat epilepsy”, not by a long shot. I am epileptic and it affects me daily. I don’t have seizure because I take pills twice a day. I make excuses not to go out too late or drink too much, I have nightmares, and I get anxious every time I an in a situation where having a seizure could kill me (ie. riding a bike. Yes, every time I get on a bike.). So that’s pretty heavy. But what I want to share is what I did this morning.
I woke up, took my medication and looked at a photo frame of images I see daily. Today it affected me a little bit differently. I have done some pretty amazing things with my life, none of which would have been possible without the help of my neurologist. So I spent my morning making a grade 5 style thank you card to send to my neurologist.
So for those of you who send me messages asking about “natural cures for epilepsy” or advise me to try smoking pot, my response is always going to be some version of: “Trust your f***ing doctor!”. Your neurologist went to school for at least 8 years. People don’t go into medicine to harm you. In Canada doctors can not receive pay out or gifts from “big pharma” for prescribing medications. These people want to help you, and if they seem frustrated when you ask about natural cures it is because they know that you are heading down a path that is likely not going to help you. These people have seen more cases of epilepsy than I have, they have read countless scientific studies compiling hundreds of epileptics cases, and they know what is scientifically proven to work. They know that sleep, diet, and exercise play an important role. They are also knowledgeable about when you probably need to start on medication. I distrusted my doctor for years, trying all kinds of alternative stuff. Spare yourself the seizures you don’t need to have.
Is medication going to work perfectly right away? Maybe not, it took me about a year of working with my neurologist to get a dosage and medication that works for me. Scientists don’t fully understand this disorder, but a neurologist knows infinitely more than I do from my experience with one case of epilepsy. I don’t even know how to read an EEG, nobody should trust my advice over a doctor!
Living a healthy life helps with any condition, and doctors will tell you this: sleep enough, eat healthy, exercise…but also you might need to take medication. And that’s okay. So if you want emotional support please send me a message. I am always happy to talk to another epileptic. But do not try to substitute my advice for that of an expert.
One last thing. Stop telling me to smoke pot. I need the medication that I am on.
My epilepsy tattoo in lieu of a medic alert bracelet, and my medication which has allowed me to live a life I love.