Our Stories
Our Founder
Caroline Williams
I spent much of my childhood in and out of the hospital and on various types of medication. I was 7 years old when I was diagnosed with petit mal seizures, now known as absence seizures. I suffered depression badly as a child and hated “being different”. I think epilepsy was a very much hidden topic and not talked about when I was younger. I was over the moon when, as a teenager, I was told that my epilepsy had “gone away” and I could lead a normal life and learn to drive.
After being cleared of epilepsy for almost 10 years, in my early twenties I developed tonic clonic seizures, or grand mal seizures as they were then called. I was devastated.
I spent a week in hospital after my first tonic clonic seizure. They tried to find a cause but could not give me a diagnosis. I continued to suffer from deep depression, anger and denial. After years of sporadic seizures and countless hospital visits, I was finally diagnosed with tonic clonic epilepsy. I was still in denial and refused to accept I had epilepsy; I kept it hidden like a monster I refused to let out. I think my family and loved ones struggled too. I really struggled with the medication and my family were desperate for me to be safe and under control.
As my life moved on, I developed a passion for health and fitness, and with this passion came an improved mood, more energy and fewer seizures. The more I focused on improving my diet, mind and body, the better I became. I was able to control my illness through nutrition and exercise. After spending so much time researching the benefits of food and exercise on the brain and body, my passion became my career. In 2010 I graduated from University with a first class honours degree (yes anything is possible!). I went on to become a lecturer in nutrition and wellbeing for Leeds Beckett University and The University of Hull and I now run a successful business as a nutritionist and lifestyle coach.
I’ve discovered when you combine happiness, physical activity, relaxation and nutrition you have the key elements of physical and mental wellbeing, great for your average person but even more important for someone with a complex brain condition or health disorder. I practice what I preach and try to focus on the positives as much as possible. I (mainly) eat a highly nutritious diet (balance is key, so I also enjoy myself too), I exercise, go outdoors as much as possible and try to surround myself with positive people.
Epilepsy still affects me. I do not suffer from seizures very often, however the little undercurrents that run in my brain (epileptic activity) still affect me, in only a way that someone with epilepsy can understand. Things such as daily headaches, mood swings, fatigue and insomnia, not to mention the side effects of medication. However, the ocean and the great outdoors keep me sane and often heal me.
My love of the outdoors really came from my change in lifestyle. I stopped drinking alcohol (my biggest trigger) 7 years ago. I searched for new ways of making myself happy. I learnt to surf and snowboard, took part in obstacle races, wild swimming events and challenged myself physically and mentally. I also learned to find inner peace in being outdoors, especially being in nature. I love the woods, the moors and the ocean.
I found the hardest part of epilepsy was not being able to talk to people who understood. In November 2018 I went on a journey with myself, where I pledged (on Facebook) to fully accept epilepsy (something I had always struggled with) for the 30 days of November (Epilepsy awareness month). I shared a post every day, from the positives to the hard times. The feedback was truly amazing and touched my heart in such a way I found I wanted to make a real difference. In my 30 day challenge I pledged I would set up a support group in Plymouth, as there was no support available to anyone with epilepsy or seizure disorders (the nearest one being over an hour’s drive away). This is where our support group came from.
In January 2019 Plymouth Epilepsy Support Group was officially launched. What a journey we have been on! I’m so proud of everything it has achieved and continues to achieve. I myself have been on quite a journey, I have now fully accepted I have epilepsy. I love the fact I can now combine my journey with my knowledge and help people who are going through similar struggles or are newly diagnosed. Epilepsy is very frightening, confusing and isolating. However, the group has proven nobody is alone and we can support each other. Anything is possible with the right support and guidance.
Here's to good health and a brighter future together.
Love and best wishes Caroline xx