Life Lately – Epilepsy Story

I got strength to type this post to share and let people know about Epilepsy and how it affects my life. In honor of World Epilepsy Awareness Day, here is my story.
When I was eighteen, I was with my classmates at Perdana Resort, get together with our teachers and the classmates. We eat, we took a lot of pictures, we talked as usual. to be honest, everything was fine until the next day. So, that thing happened on the next day. I woke up with a lightheaded, that time I guessed it was because of the lack of sleep, then I taking a shower and my head still hurts and when I was drying my hair with the towel, I really don’t know what actually happened. Again I woke up, fading in and out of consciousness with a terrible, awful headache. Surrounded by my friends, including the boys and there’s I am,  lying on the bed with confusing and I can’t even remember what happened. I DIDN’T REMEMBERED THAT I GAVE MY IC NUMBER TO THE DOCTOR, WHEN I GET HOME I’M SENT A MESSAGE TO MY FRIEND WHO ACCOMPANIED ME AT CLINIC, ASKING HER WHO GIVES MY IC NUMBER. DAMN IT.
Seizure is the most embarrassing moment in my life. Having seizure disorder and officially epilepsy isn’t that easy for me to endure it with myself. The whole time, I, obviously, haven’t seen my own seizure but here’s what my Umi sees : my eyes looking to one side, convulsing body, drooling, hoarse breathing combined with awful sounds (caused by oxygen deprivation). She says I look and sound like I’m possessed by the devil; the classic possession you see in horror movies. I even seizures in the bathroom, and my brother in law told my auntie about it (my family wasn’t there when I got seizure in bathroom, only me,  my brother in law and my auntie who lives next door). My auntie  get into the bathroom saw me naked, lying down on the floor, while trying to help me, I can’t stop myself from thinking about it until now, that was the most embarrassing moment in my life. Sigh. I don’t control my seizures. Seizures have controlled me,  and much of my life for years now,  though I am beginning to regain control of my life through a better treatment plan.
I got frightened and nervousness about this Epilepsy thing, when Umi told me about my uncle, he falling off the tree and died because of Epilepsy. I don’t know how worse his condition was and can’t even imagine how worse it’s. There’s is another uncle, also have epilepsy and he has a good life with his wife, children and grandchildren but what’s making me feel happy with him is his wife. She take care him and will be there whenever he needs help with the seizure. Both of us will be happy with our fine condition, and keep updated with each other about our seizure, whether it been better or worse. The scary part is, when he was driving to the somewhere and got into accident without realizing it. Lucky there was his son who sit next to him, he was pulled the handbrake and banged the car into the clinic nearby. Maybe that’s why my doctor said that I have to eat my meds on the time and here I am  have been ‘enjoying’ my life with the pea sized and purple color medicine, typical for Epilepsy patients. Lucky for the beautiful color and I keep thinking about the effects of the medicine for me, for sure right now, I keep taking my medicine to avoid it becomes terrible and worse. I’m trying hard to make sure myself to eat medicine to avoid it bothersome and annoying people around me and also can
I give up on the traditional treatments because of no matter how many times I got the treatment, my condition got worse then fed up with that and I referred to the hospital and epileptologist about my seizure. I know some of you might think that I should trying both,  modern and traditional treatments, but put yourself in my shoes, if you just had woke up with an awful headache with the bruises and swelling on your forehead, you doing nothing but feeling tired like you’d a heavy job non stop 3 days straight  and then sleep all day, what are you gonna do? How would you feel? I wasted my money on traditional treatment and I got nothing,  I haven’t had a full seizure in almost a year now, maybe because of I’m strictness with the meds on time and also trying to take it easy and have positive thoughts and prayers, doing what I like and loves. For example, reading and walking and watching any shows. Regarding why I can’t even finish read any books is I keep thinking about the plot of the books and I scared I’ll be depressed then it’ll be seizure. You’re never know what happened after the seizure. I felt pain and powerless yet again. That time, I wish I died,  because I can’t even endure the pain, the depression and anxiety attack on myself.
Some people who have epilepsy will be having an auras, occurs to ringing into the ears, visual disturbances, and smell of the something worst, feeling like something wrong with your surroundings. Some of us have it,  and can get themselves ready if it will go on into a full-on seizure, occurs to the doctors. But I’m not. Mine is a seizure that will be go-on as a real seizure without any signs, that’s mean I don’t know when, where I will be got seizure. Sometimes I tell to myself “you don’t have it as bad as others”; you don’t have multiple seizures a day or a week. But,  somehow that doesn’t make me feel sadness. I wish I didn’t have it and I wouldn’t it to another person. My struggle is real. My sadness at having an incurable condition is real. The damn seizures are real. And the postictal phase with depression and anxiety and the pain are real. The memory loss and the feeling weak are damn real. I’m only rely on medicine for this Epilepsy and wish it will be gone for good and leave me alone with my family and friends.
In a nutshell, seizure and epilepsy patients life’s depends on the medicine and have prepared to eat the medicine on time. Images below is an app to support everyone affected by epilepsy.

Download here Android & Apple Store

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