Continued from Part 1
I will never be able to thank my Mum enough for the hours she comforted me when I was shaking so much I could no longer feel my body. Or the times when she wiped my tears away when I couldn’t sleep at night.
I began to lose my appetite and lost weight fast. I dropped from 9 stone to 5 stone and a bit (a little more than 70 lbs). I couldn’t stand up and whenever I saw food it made me feel sick. My parents rushed me to the local chemist to ask them to change my liquid Ethosuximide to capsules as the liquid tasted so bad it was making me sick. Anything I did eat came up anyway. I remember collecting it from hospital and the package read ‘tropical fruit flavoured’. I said, “Oh that can’t be bad then.” I was so wrong, it tasted like fish. They changed it for me anyway, and a few weeks later I was a stone heavier.
I have had to stop a few of the things I loved to do. For example, I had to stop playing the flute and swimming. The breathing patterns triggered off absence seizures and swimming was made too dangerous.
I remember I went swimming with my close friends one weekend, and as we got out of the pool to go on the shoot, I started to feel incredibly wobbly and faint. I blacked out and when I came back from my fit I saw my friend stood looking at me. “Emily, what is going on?” she asked confused as a bunch of people stared at me from the corner of the pool. I was so embarrassed.
After all these experiences I have learned that it isn’t my fault. Why should I be embarrassed?
“So what does it feel like to have a fit?” lots of people ask. The thing is, it is so hard to explain. The way I describe it is this: when you feel yourself slowly going to sleep, but you want to stay awake so your eyes are really heavy and you know you will fall asleep any minute, and then you do, that is what it feels like at first. Then when you wake up from your sleep and you know you have been asleep but don’t know how long for or what you’ve missed, that is what its like when I wake up. But during my seizure, my eyes are open the whole time.
I feel shocking afterwards. I feel tired, sick, dizzy, and I feel like I’m dreaming. So many people have said ‘you can’t tell you’ve been through so much.’ Or, ‘how did you get through all of that?’ The truthful answer is, I honestly don’t know.
It is difficult to put into words how hard it was overcoming my eating problem, and how to put a healthy amount of weight back on so people wouldn’t notice. It has been hard overcoming the nights I couldn’t sleep because I just went into shock. But I find a smile doesn’t hurt, and is the best medicine after all!
I still suffer from awful tiredness and sometimes I can’t sleep no matter how much I want to. But I always try and keep a smile on my face! Since being ill I had got back on my feet, and was seizure free for over a year. But I recently had an absence seizure at college, followed by what is known as complex partial seizures.
Any form of epilepsy is traumatic, whether it is petit, or Tonic–clonic seizures, they affect you and your life. I am so thankful for my friends and family who have stuck by me when I need hem the most. I researched support sites to read other peoples stories who suffer from the same seizures, and I knew I wasn’t alone.
My plan is to keep my head high and carry on doing what I love. I am a passionate photographer, and one day I hope to own a studio, and capture memories for people so they can treasure them forever-I may have missed a lot of school work, but photography is something I have always loved and I always will.
You may be wondering why I chose to post this-if you are, it is because I would like to help make more people aware of epilepsy and its effects on people. I am aiming to get as many people as possible to read and share my story with as many people as they can. My seizures haven’t stopped yet, but fingers crossed they will soon.
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Jessica brings a unique perspective to this leading epilepsy blog as she was diagnosed with epilepsy as a teen. She also brings 20+ years experience in marketing.
Thanks so much for sharing your story. My son is almost 12 and is having the same kind of seizures and it is so great hearing from another real person what it is like. His medication is not working and makes him extremely irritable so that is frustrating. Best of wishes to you!
Thx so much my 9 year old girl had been dianosed with petit mal and it is so reassuring to hear of all these experiences from ur viewpoint thank u so much x