My story of riding the waves of epilepsy

 

Amy was diagnosed with epilepsy at a young age. Thankfully she has now gone a full year without having a seizure. Here Amy shares her story, the challenges she has faced and how she overcome them.

The storm has passed. My only hope is that it never shows its ugly face again. On the 24 June 2020 I have experienced one full year with no epileptic seizure.

That doesn’t mean it has been an easy year, I still have epilepsy and suffer from absence seizures, but even their severity is reducing.

On my one year anniversary I honestly struggled to deal with my emotions.

Some days I never imagined having a life that was not hampered by my “illness”, however, now there seems a more positive future ahead, maybe I will not always be constrained by the dreaded threat of a seizure. Or will I?

 

My first seizure

I will never forget the experience of my first seizure. My day started with such excitement; taking the train into Glasgow to see a Christmas pantomime with my mum. The day rapidly went downhill.

I remember boarding the train and then waking up on a cold damp floor surrounded by strangers, with a cold wind blowing through the train aisle.

My mum was staring at me in complete panic with tears streaming down her chalk white face, making me feel even more overwhelmed. I had no idea what was happening.

Very soon paramedics and police officers were fussing over me. The conclusion was I had fainted. I was only 10 at this time, and although I got a scare, I easily forgot about it and moved on.

Unfortunately, things went from bad to worse.

Something was just not right. I would roll my eyes to the back of my head and people would need to shout at me to get my eyes to come back round again.

I would lose track of conversations and not keep up with teachers explanations, I felt like I was going insane!

I kept my frustrations to myself. Looking back I now realise this was a big mistake. If I had reacted differently, and explained everything to my mum I would have got help far quicker.

When I did finally breakdown to my mum I felt a great sense of relief, as always she promised we would sort everything out, this gave me the hope I needed.

What followed was a whirlwind of doctors’ appointments and tests. And, finally a diagnosis, I was epileptic.

Epilepsy

 

My life was no longer my own

Epilepsy, even the word made me shiver. My eyes rolling were absence seizures and my fainting was full blown epileptic seizures.

I was bombarded with different types of medicine and advice from the whole world! I felt like I was being smothered by bubble wrap, I now appreciate that everyone was just concerned for my health.

Also, I could no longer walk to school myself, I had a special pass for me to finish classes early so that I was not surrounded by large crowds, I could not continue with my ice skating.

My like was no longer my own. I felt so isolated, frustrated and most of all scared. Every day I was just waiting, waiting for a bolt of lightning to strike me.

To knock me off my feet, to electrocute my body, then leave as quickly as it arrived.

With each seizure I lost part of my personality, I hated what was happening and I didn’t understand why it had to be me.

This is one of the most infuriating features of epilepsy, you will never know why you are the chosen one.

Now that time has passed, I accept this and realise I need to move on; that is easier said than done when you are a young naive girl.

 

Side effects

At the age of 12, I was not only young and naive I was also downright stupid. On top of the seizures, I also had to deal with the awful side effects of the many medicines I was forced to take.

Yes, I use the word forced, at this time I felt like my mum was poisoning me, but now that I am older I understand how ridiculous my theory was back then.

I was convinced that the medication was not helping me, it was making me feel sick, making me tired all the time, not to mention the terrible mood swings I suffered from. I therefore took it upon myself to stop taking all tablets.

Of course I hid this from my family and obviously my seizures became more frequent and severe. As I was lying to my family and the doctors nobody could understand why my situation was getting worse.

Only I knew the truth. Looking back, this was one of the most ridiculous actions I have ever taken. I was hiding my tablets around the house, putting my younger brothers life at risk.

If he had ever swallowed them I do not know how I would live with myself.

Honestly, this nearly did happen, and it was the turning point in my young life. My mum found one of my tablets in my brother’s hand, he thought it was a sweet and just in time she grabbed it from him.

I could see the disappointment and anger in her face, I hated doing this to her, but I also hated what the doctors were doing to me.

That night my parents sat me down for another long stressful conversation.

Only this time it worked. My dad repeated over and over that I was going to kill myself and my mum was crying inconsolably. I knew I couldn’t keep putting my family through this torture. I needed to get my act together.

 

One year seizure free

I made a promise to everyone that I would take my tablets every morning and evening, and I have never broken my promise since that night.

My journey through epilepsy is still going, but I have learnt a lot; I need to be patient with myself, sleep when I am tired, share my worries and celebrate all small achievements.

Reflecting on one year seizure free the sun rays are beating down on my back garden. My family are celebrating my Grandad’s birthday and my victory.

I can happily say I am proud of the birthday gift I have given him. For the first time in years, I finally feel like I have control. Epilepsy will not take over me!

If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer on dcoates@epilepsyscotland.org.uk or call 0141 427 4911.

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