Happy Purple Day to all my fellow wonderful epilepsy warriors. To celebrate purple day and help spread epilepsy awareness around the world a few of us have decided to reflect on our epilepsy journeys searching for the rays of light amongst the clouds of epilepsy.
So if you enjoy this blog search #PurpleTogether for more inspirational stories shining a positive light on epilepsy.
In the beginning…
My epilepsy journey began 13 years ago, I was 18 years old on a gap year, living life to the full. Having struggled through school where I didn’t feel I fitted in, I was working hard in a job I loved, had found new friends who accepted me for me, I was enjoying life, probably drinking a bit too much and sleeping far too little but so was everyone else.One day I was out on a training run and the next thing I remember was waking up lying in a country lane having hit my head and bitten my tongue. I was very confused but managed to stumble home. I presumed I had fainted so didn’t really think much more of it but looking back that was my first tonic clonic seizure I just didn’t realise it.
A few weeks later I went off to university, enjoying freshers week and meeting lots of new people my confidence was growing finally after years of bullying. But then on one of my first athletics training sessions I collapsed again, this time people were with me and I was taken to hospital in an ambulance but discharged a few hours later to walk home.
Armed with witness accounts of the last episode I remember within a few minutes of seeing the neurologist he explained that it was a text book tonic clonic seizure and considering the previous unwitnessed collapse it sounded like I had EPILEPSY.
I remember crying my eyes out, I couldn’t drive I was in a new place miles from home and I might have a seizure again at any time, how was I going to manage this? I felt like the independence and confidence which I had built up over the last year had been robbed from me in an instant. It wasn’t fair.
At that time I was in a pretty bad place, dealing with seizures, medication increases and being miles from home. So what turned it all around? Well it was more of a who… the turning point in my epilepsy journey.
My mum took me to an Epilepsy Action information day in Brighton while I was home for the holidays. That was when I met Stuart. Stuart is an accredited volunteer for Epilepsy Action and he stood up to tell his story and suddenly something switched in my head, Stuart had used his epilepsy to do so much good and make a difference to others, that was how I could get through this.
Stuart will never realise what a difference he made in my life but on Purple Day while reflecting on my journey I would like to thank him for sharing his story that day and for all his amazing support in the years since then you have become a truly special friend.
Over the years my epilepsy has impacted on my life to different degrees, seizures have happened big and small, my confidence in my own body has gone up and down and the challenges epilepsy posed on things like starting a family, work, driving have varied greatly. But the one things which hasn’t changed is my passion to make a difference to others with epilepsy.
I’d like to share a few of the projects that I have been involved in over the years as a way to show some of the positives and to raise awareness of epilepsy. If you just chose one to look at further it would be an amazing way to spread awareness on Purple Day 2017.
Not long after meeting Stuart I trained to be an accredited volunteer for Epilepsy Action and over the years I have helped at lots of information events, supported other people affected by epilepsy and given epilepsy awareness presentations to care homes, schools, nurseries and businesses across the south east of England to raise awareness and understanding of epilepsy.
Youth Health Talk
While at university I got involved in an amazing project with Oxford University where young people shared their experiences of epilepsy and other health conditions in videos. I was interviewed for the epilepsy module but was also asked to be on the youth panel which made decisions on the future of the website and it also meant I met lots of other inspirational young people.
After having our first child and feeling unsupported and alone Epilepsy Action asked me to be involved in their HealthE Mums-to-be campaign which was an amazing opportunity to help support other women through the diaries, interviews and workshops.
It also introduced me to the amazing Kim Morley the only epilepsy midwife in England who helped make our second pregnancy with Benji a far more positive experience and I can’t thank her enough this purple day.This Blog
My blog which started as just my way of writing down my experience has turned into so much more, it has allowed me to share my story with so many other women and to help others feel less alone and more empowered in the pregnancies.
The seizure and epilepsy support group
Through my blogging I was approached by the lovely Torie to admin this group with a few others. This group has given me so much support and also feels like a little family (growing fast). I feel like the other admins have become really good friends although we have never met I know I can turn to them for advice and they will always make me smile. The group is amazing and I have made friends there who truly understand what it’s like living with epilepsy.
So I guess what I am saying is if epilepsy hadn’t entered my life I would be a very different person. From a practical perspective I look after myself better now, I don’t drink much, I make sure I get enough sleep, I eat well and exercise. But my experiences which have really shaped my life are all because of my epilepsy. I have also been lucky enough to meet so many amazing people on my epilepsy journey who have made me a better person.
Stronger as a family
I also feel blessed because I met my husband at a time when my epilepsy was at its worst and his support and acceptance of epilepsy showed me what an amazing person he is and that together we’d be able to overcome the challenges life will throw at us.
We are now a little family with our two children who are incredible and I feel epilepsy has played a part in shaping that and making us who we are and I wouldn’t change that for the world. I think my children are more accepting of others health challenges because they have grown up around my own.
Epilepsy impacts on the whole family and while I hate that I have been a burden on my mum and dad over the years when I should have been an independent adult. I think it has also brought us closer together. My Mum has always been amazing picking me up when I am down (literally and metaphorically) and my Dad has a way of supporting me that is much more practical but equally useful.
Not being able to drive has meant I have spent a lot more time being driven around by others, many would see this as a lack of independence and it was frustrating at times but it was also an amazing chance to talk to the people closest to me and I think brought us closer together. My Grandad before he passed away, my Mum and Rich all drove me places and I feel so thankful to them but I enjoyed that time with them just chatting about life.
So yes epilepsy is awful, it steals your independence and self-confidence, friends leave and seizures hurt, but would I change having epilepsy? No I don’t think I would because if I didn’t have epilepsy I wouldn’t be the person I am today.
Show your support this Purple Day
I am now two years seizure free, something I never thought would happen, will it last who knows, but I make the most of the freedom this seizure freedom gives me. This year I am running the London Marathon for Epilepsy Action which considering how my journey started is a huge achievement in itself. I am going to run a mile for each of the inspirational people I have met on the way.
Stuart, Torie, Leanne, Vince, Faye, Vicky, Gemma, Linda, Amy, Victoria, Louise, Samantha, Byron, Rebecca, Jamie, Seb, Jessica, Brendan, Jade, Daisy, Melissa, Emily, Hayley, Jane, Lydia (and the last mile and a bit, for everyone who has supported me on my epilepsy journey).
So happy Purple Day to you all, I hope this blog shines a positive light on a condition which is so greatly misunderstood.