Epilepsy and Me

This week is National Epilepsy Week to raise awareness about epilepsy, what epilepsy is, who’s affected and what can be done to help those who suffer from this condition.

So What is epilepsy?

Epilepsy is a neurological condition that affects the brain and causes recurring seizures or fits in those who suffer with the condition.

Due to an uncontrolled increase of excess electrical activity in the brain interfering with the normal functions, this causes a short interruption to the relay of messages in the brain.

Who’s affected?

The short answer is it can be any one and around 500,000 people in the England are diagnosed with epilepsy, affecting people of all ages..

Back when i was about 7 i can recall waking up in a hospital bed in Swansea in South wales feeling like my brain had been squashed and every part of my body felt like it had been thrown against a wall hard.

I could not remember anything of how i got into the hospital bed and was very disorientated at the time laying on a hospital bed in a hospital gown with my gran and grandad to the side with my little sister who was crying.

That moment has stuck with me still some 40 years later as it transpired that was the first witnessed and diagnosed Epileptic attack I suffered when on holiday with my grand parents and sister in Wales.

We were caravanning in on the Gower peninsular and had gone shopping to a Tesco supermarket in Swansea were I had been pushing the trolley and the first sign my granddad noticed was he turned to see me spinning around with the trolley gripped firm in my hands then the trolley smashed into a display and i fell to the ground suffering a full on seizure.

The normal crowd of onlookers had apparently appeared not knowing what was going on or what to do for many they probably had never see or even knew what epilepsy and and seizure was as it was just not something talked about or really out there in public.

Thankfully a member of staff apparently appeared and got the trolley that had fallen over moved away and as was the way back then made sure I was not going to swallow my tong and when the seizure ended put me in the recovery position by which time the ambulance had arrived and then took me off under blue lights to Swansea hospital.

This is were after some time i awoke to find myself on the examination bed in a hospital robe as I had during the seizure wet myself and had also food over my clothing that had fallen out the trolley.

When we were eventually discharged I slept for 24 hours my body drained from the seizure and my head unable to process what had happened to me.

When we got back home my Mum took me to our Local GP and that started the process of consultants and test with my head wired up to equipment to monitor brain waves and things like that and at the young age a lot to take in.

I recall after the first time my head was wired having to go to get my hair cut as there were blobs of white sticky stuff that had held the wires in place.

The barber asked if we had been decorating to get all this paint in my hair I remember looking at my mum in the mirror and the sympathetic look when I just said yes to the barber.

At that time I was still scared and did not want people to know what was wrong with me. I felt like it was broken and people would be scared of me and what it was and my friends would not want to be my friends all those sorts of things going around my young head.

When the Consultant I was under "with a name I will never forget Dr Spoke was his name and you can image the laughs I had with that one" finally made his firm diagnosis of Epilepsy he put me on some medication that 40 years later I ma still on to help control the seizures.

Over the next few years I had a number of seizures in all sorts of places from school to down the street to getting on the Bus and later at work.

In my early teens as I started secondary school I made the decision I was not going to let Epilepsy control me and what I could do and not do.

I caused me issues and yes when my friends were off getting their driving licence I could not It was when I was about 22 and after talking with my GP that I finally passed my driving test first time.

A few years later I met Sarah my Wife we got married and moved to Cumbria were Sarah was from and I have not let Epilepsy hold me back I have my own business built from the ground up, I am the leader of a regional Political party have been Chair for the FSB in North Cumbria, I am a local councillor, a school governor among a list of things I do to support the community and my most proud role as well as been married to Sarah is as dad to my Son who is now 7 himself and my driving force for all I do to help make positive change for for his future and that of all his generation.

I know that I am fortunate and that epilepsy can be very different for many and make quality of life for some very difficult on them and their family who must care for them 24/7 

I also know that like all who suffer from epilepsy it can with any seizure be the one that ends my life.

That is what has driven me to live life to the full and not let the condition hold me back from doing so.

So what is National Epilepsy week and what am I supporting it?

Well I feel just as when a person has a heart attack or suffers and accident everyone should know what to do if someone has a seizure as it could literally help save a life.

I also feel that people need to understand this hidden disability and the impact it can have on lives of those suffering with it and those caring for them.

I feel schools should at a young age start to talk about Epilepsy and other conditions so children grow up with the knowledge about the condition and what to do to help if they see someone suffering a seizure and this will see the social change to the condition and knowledge over time.

Thankfully we have seen some social change and acceptance of the condition from more medical times when Medieval physicians applied the ancient Babylonian belief in demon possession to epilepsy, That had the therapy for epilepsy based on rituals with patients considered 'possessed' or labeled as witches and warlocks. Victims experienced prejudice, exorcisms and social marginalization.

Thankfully we evolved and medicine with it but we have a long way to go.

My one single ask of all that read this is you go find out a bit more about the condition this week and maybe even learn how to help if you find yourself in a situation with a person suffering a seizure.

Talk with others about it as this will help those how suffer from the condition to reach out and share their condition with friends and colleagues who they may have felt would not understand, maybe prejudice against and social marginalization.

The important ask is that you learn to recognise the symptoms of a seizure as a great place to start helping those affected, as well as knowing what to do when a seizure occurs to minimise the harm done to both the person and those around them. You can also look into lobbying for more support for those affected by epilepsy, so they can get the treatment and care they deserve.

Thank you for taking the time to read this and if you or anyone you know ever wants to talk about Epilepsy please feel free to contact me any time.