Manon - Purple Day 2021

My one wish is for people to realise that even with epilepsy you still have the potential to be a "healthy" human and with the right mindset you can achieve anything. I feel having epilepsy shouldn't stop you from achieving your goals and ambitions however for me it takes me a little longer to process information as I sometimes get overwhelmed but that is very rare. 

“I was diagnosed when I was 5 months old.  I have tonic clonic seizures and they usually last for three minutes. I have seizures very rarely now. I had my last seizure in April 2020 when I fell and scarred my face whilst running.

I do not tend to have warnings when I have my seizures and therefore this can be dangerous, however I am on medication that controls them. I take epilim and topiramate and have been taking both for a few years now. After the shock of a seizure, my body can be in a lot of pain and I usually see a chiropractor.

I have been fortunate that epilepsy has not stopped me from participating in school activities and keeping fit and healthy. However, there are times when I have been embarrassed and ashamed from having seizures in public.

For example, on my 16th birthday I had a seizure before the party had begun. I was left with scars on my hands and face. I was told my dress rode up and two old friends of mine threw a blanket to cover me. I laughed it off but inside I felt humiliated. To know that people saw me in such a state when I wasn't even intoxicated by drugs or alcohol makes me feel so humiliated.

I never asked for epilepsy. It’s the sense of losing control (and not the good kind) - but the kind where you become so helpless that you are unaware of everything surrounding you. Accepting I have epilepsy has been a hurdle, I must say. I feel for a long time I felt the pressure to match everyone else's energy and keep up with others, when really I was feeling weak and rather frail. Some days I felt strong and unstoppable. On other days, the shock and emotions hit me like a tidal wave. I wouldn't know how to react and I would stare into oblivion, just processing everything

I am proud I am still alive and going to the gym and trying to stay at uni. Sometimes I question whether uni is right for me, when really I would feel more safe at home. I’d love to go on adventures and explore the world however, the risk of having a seizure makes me feel unsteady.

I think being an epileptic has bought me closer to some really great people. One being my best friend Cecilia Adamou. I was always amazed by her strength and courage. Cissy had a heart transplant and is now talking openly about her journey and this has encouraged me to talk about my Epilepsy.  

In schools, we aren't taught much about epilepsy and mental health. So I feel sometimes others do not understand.

I would not understand if I didn't have epilepsy. I would not understand that sometimes you may feel alone even if you have one sitting next to you. I would not understand that being independent is such a vital step in life. This is why I would like to take part in raising awareness, as I feel it is needed and I strongly believe you can live the life you always dreamed of even with epilepsy.

Manon - Purple Day 2021
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