For me it is hard to write things like this especially as it causes anxiety for me and not many people understand what epilepsy truly is. I'm sitting here trying to figure out how to word this as best as I can. My medication is designed to slow down my brain and I'm trying my hardest to write this in a way people understand. I'm worried about sounding stupid for my story not making sense. So here it goes!
When I was 13, I had my first ever epileptic seizure. I wasn't scared to begin with. When the "jerking" movements in my arms started I had thought it was normal. I had hit puberty not too long before that so it's possible that the trigger for my epilepsy beginning was due to the hormone change. It was about 6 am and I was brushing my hair and then the next thing I remember was waking up in an ambulance being told I had a seizure. I didn't know what it was at first so I thought nothing of it and acted like my normal happy self. Now things have changed so much.
After many tests, the doctors had diagnosed me with Photosensitive Epilepsy and began my treatment with medication. I was naive when I was that age so had no idea of the challenging road ahead of me.
I never thought I would lose friends but I did.
I never thought it would be hard to pass classes in school but it was.
I thought it would be easy to get a job but it took me 7 years to get my first job.
I thought pregnancy would be easy but I had seizures often.
I always imagined that I would get married and live happily ever after, but I push people away so I don't hurt them.
My daily struggle never ends, even when I'm asleep because I dream about it. It's possible to have seizures while sleeping. I began questioning my own life, is it worth it? Do I have to live with this pain everyday? With the medication that has a massive impact on my life, I lost confidence. I'm no longer than happy teenager with friends. I'm now a woman with dreams that have been crushed, dealing with discrimination and people not understanding.
I can't stand going out anymore. I tried but nothing could numb this feeling of being inadequate. Do I deserve to be around people? I had been in counselling and in the doctors often. I have test after test. I'm too scared to tell them I'm ready to die. I don't think I could be brave enough to do it myself. My next seizure, I'm hoping I don't wake up. This is what my life has become. Without suffering everyday, where would I be today? Happily married and having children? A good job so I have a stable home? Maybe I wouldn't be depressed anymore.
I do have a son. I'm not going to keep him a secret. His dad was emotionally abusive and used my Epilepsy as a weapon. He told me everyday that I was not good enough and I will never be a good mum to my son. Imagine that? Fear being created and causing me to have a damaged heart as well as a damaged brain. Maybe I'm not a good Mum, I can't even get a good job for us to have our own home. I still live with my parents and feel trapped here. I have a feeling they don't care much about me but maybe that's my paranoia from the medication. I can't really separate my own moods from what the medication is causing anymore. It's been 12 years. I should know the difference!
I agree that this is a depressing read, but did anyone really believe that life as an epileptic was easy? That we just fall on the floor and convulse, then get up and be fine? That is also not the truth, It can takes hours for me to recover and I loose chunks of my memory. I can be scared of being alone for weeks but enjoy the loneliness. The fear comes from "What am I going to do if I have a seizure? No one is here to help me."
The horrible truth is; epilepsy never comes alone. Depression, anxiety, psychosis, mood swings, weight gain, sleeping problems. Then there's the daydreaming state I'm in sometimes throughout the day.
I smile on the outside but I'm rotting on the inside.
Even though this is only part of my story, still epilepsy will not be made a big deal. No one will ever recognise the danger of SUDEP because no one talks about it. As I'm writing this with tears falling down my face, I want it to be known and recognised. This is my story. The raw truth, the sad truth; this is my life.