I had my first seizure when I was 19 and in the months to follow I suffered 2-3 daily. The seizures left me wheelchair bound due to the severe weakness from constant seizures. I moved abroad to study when I was 21 and it was not until then that I was diagnosed with epilepsy and put on medication. I suffer from both Grand mal and absence seizures.
As a result of the tonic clinic seizures my life is plagued with extreme fatigue, confusion, memory loss, frequent injuries of broken bones and dislocated joints and most of all - I am plagued with fear.
By February 2021 I was one year seizure free. I began to drive again and regain my freedom. However this was short lived due to suffering a seizure whilst having a MRI scan in August 2021.
Every day, no matter how long since my last seizure, I am scared for what will happen to me. Unlike most people I cannot guarantee that I will stay conscious throughout the day. Seizures can happen at any time in any place. Even now that I am married, if I ever drop something and it makes a loud noise my husband rushes to find me worried that the bang was me falling from a seizure.
I don’t know if my family and I will ever rid ourselves of the constant fear of seizures and the risk of SUDEP, but I am hopeful that one day I will be able to once again consider myself seizure free and have my freedom back.
The biggest aspect of epilepsy for me which other people rarely appreciate is that having seizures means suffering from more than just the seizure itself. Epilepsy can mean a lack of freedom, trigger social stigma and present issues in employment.
Despite the severity of my seizures I am now working full time training as a solicitor, I have travelled abroad extensively by myself and I am now married and hope soon to start a family. Without doubt epilepsy has changed my life and sent me down a path different from that I ever anticipated but it has not prevented my life from continuing.