We think we are in charge of our lives, we think we are strong and that we can make rational and irrational decisions, but one thing for sure, we are all very weak and we are all dependent of our health, and especially mental health.
I am suffering from NES, Non Epileptic Seizure which I found hilarious as a name; because it sounds like the person is faking it. But according to experts in the field it happens to people who have had trauma in their lives, war experiences, rape…and so on.
As far as I am concerned, I have had a beautiful childhood, but I was born with a heart condition which leaded to whether an experimental operation or one way to the grave yard, my parents bless them have taken their chances, and I will always be grateful.
The heart operation was done at the age of six months that is as far as my traumatic experience can go, I had my first seizure at the age of four, as I can recall, but being under extensive care after the operation, I have no idea if I had one before that age.
I am glad to be leading a healthy life, apart when the fits kicks in, I seem to change as person, my behavior can be aggressive, my moods can change, my energy level collapses, and the more I am tired the more I know that the fit is closer (which is an amazing thing at least).
The fits themselves can last for 10 min to an hour, but the side effects can last up to 24 hours, where I become a vegetable, I can’t move, look after my child, or function as a person, I am on a pause mode or reboot if we can say so, as all I can do is sleep.
The funny thing is that the more I try to figure out this disease, the more it changes, as if we are playing a game, so far it is winning, but according to my husband or should I say my rock, the man who has loved me with all my diseases, as I had hepatitis C, and he stood by my side through one year experimental treatment until the bitter end, and Epilepsy which has been part of his life too.
He reckons we are winning this battle, as having the fit 7 months and half apart is a huge success to compare with 4 to 5 times a year. I can see his point and actually thanks to him, I have more understanding of this unusual disease. But I am a survivor, I have had few unusual illnesses, and few experimental solutions, but I am alive and grateful for that, actually grateful is not the right term how to describe how happy I am to be alive.
I am weak, I admit it, I can be dependent of the medication, or the preventing medication, as the doctors do not know much about NES, and they should experiment many theories before any concrete results. It seems that my life is experimental so far, but what a ride.