To begin, I must go back to my early teenage years, when I started having unexplained accidents that I couldn’t remember the cause of.
At the time I had my ears checked for any inner ear balance problems and my sight tested, both came up with no problems, yet the accidents continued.
At this point I figured I was just clumsy, however I thought it very strange that I had no memories of the accidents.
Life went on, I had various jobs, always thinking I was accident prone and clumsy. Some of the accidents were serious, I ran off the road in my car and fractured one of my vertebrae, whilst at work one of my colleagues found me at the bottom of the stairs, I had no memory of what had happened.
When I was 17, I became a support worker for adults with learning disabilities and did this in various places for the next 14 years, this included supporting people with epilepsy.
During these years I had developed an interest in scuba diving which I adored (I would later become an instructor in this and would work in a dive centre), and I had become interested in recreational running, eventually taking part in events such as half marathons.
I eventually left the care sector and commenced work at the dive centre, however I left and went back into the care sector again as a support worker.
I met my partner in April 2015 and I moved in with her in Devon but still worked in Yeovil.
In November of 2017 I had a major seizure (I was 32), because of which I was taken into the resus room of the Royal Devon and Exeter Hospital, the seizure lasted for 25 minutes. At this point I remained in hospital for various tests but was not yet diagnosed as epileptic.
I was reminded of what had happened to me in the past, but it was just put down to stress as it was a single seizure at this stage. Due to the seizure however, I was told I would not be able to dive again and couldn’t drive for 6 months.
This news hit me hard, I felt shocked and became emotional. I had suddenly lost something I loved and not being able to drive would take away my independence.
I had more seizures of various lengths and types sometimes they would happen weekly.
I was subsequently diagnosed with epilepsy, which my neurologist says I probably have had since I was young, but it was never picked up which explained the accidents I had when I was young, which were most likely caused by seizures.
I have only been diagnosed for three years which I know is still a young diagnosis. I have constant chronic headaches, because of these I struggle with my mood I have been prescribed antidepressants to help me with this.
I have been prescribed several medications to treat my epilepsy, some of which I couldn’t tolerate, and they made me extremely unwell, others have failed to stop the seizures. Some medications have stopped my seizures for a while but then they started again. I am currently on a combination that seems to be keeping my seizures stable.
The journey has been turbulent and a rollercoaster for both me and my family.
I led an unrestricted life until I was 32, and suddenly I had to adapt to huge changes, one of the biggest being the number of tablets I now must take to control my condition.
Unfortunately, recently I have been dismissed from work on medical grounds due to my increased sickness levels. I have experienced support and understanding from my colleagues and managers, their support was appreciated and valued.
My family, friends and partner have also been amazing during the last three years and have been instrumental in me being able to manage this condition.
I am currently developing a training package for staff who support people with epilepsy, I believe I have a unique perspective, as I have supported people with this condition, but I can also give an account of my experiences of suffering seizures and what it is like to recover after being given rescue medication. I begin my train the trainer course for this on 23rd March.
It is my hope that in writing this that someone who is in the position I was three years ago will read it and it will somehow help them on their journey and will make it a little bit easier.