Thursday 1 June 2017

Epilepsy 0 Me 1 ~ finding my confidence again

This post is part of the Epilepsy Blog Relay which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!

6 weeks ago I achieved a lifelong goal I thought I would never be able to achieve due to my epilepsy, I completed the London Marathon.  I haven’t really shared this on my blog so I thought this would be a great opportunity to do just that.

Rewind 12 years…

I was just about to start university and living life to the full, I loved running and my dream was to run the London Marathon one day.  I was walking back from a training run and the next thing I knew I was lying confused and sore in the road… looking back now that was my first seizure.

I went to university and while running with athletics club I collapsed again, this time people saw what happened and a few weeks later a neurologist diagnosed me with epilepsy based on their accounts.  I was in shock and felt like I had lost all confidence in myself along with my independence.

A few weeks later and I had a seizure on a treadmill, that was it, my confidence was completely in tatters and I no longer wanted to do any sport let alone run.

Coming to terms with my diagnosis

There were some dark months when I started medication and came to terms with what living with epilepsy really meant but slowly I started to turn it into a more positive things.  I started to share my story with other through volunteering for Epilepsy Action and the amazing website Youth Health Talk.

Over the years my epilepsy has seemed to settle down only to raise its ugly head again just as my confidence started to improve.  However all the time I have felt that it gave me purpose to help others and that is what kept me going.  I have also met some incredible people on my journey who inspire me every day.

One year seizure free… I want to run a marathon

Finally I was a year seizure free and to celebrate I decided to start training for the London Marathon. Running was pretty scary at first, I was worried about seizures but as I trained I realised that running had a lot of positive effects especially on my mood which my medications tend to impact on.

The more I ran and the further I ran the more confidence I gained in my own body again.  By the time I smashed through the 30km training run mark I felt like I was proving to myself that maybe just maybe my epilepsy might really be controlled, something I have really struggled to believe having lived with seizures for 10 years.

My top tips for running with epilepsy:
  • Always tell someone where you are going for a run and how long you plan to be, having a find your friend app really helps put everyone's mind at ease too.
  • Build up slowly and don't over do it, I started training a year before using the couch to 5k app.
  • Consider a seizure alarm, I have an Embrace epilepsy monitor and it has been great running.
  • Make sure you don't run if you are unwell, haven't eaten or didn't sleep well the night before especially if these are triggers for you.
  • Try mindfulness exercises to help reduce anxiety and help with pre-race nerves.
  • Make sure you are very visible so lots of high-vis clothing and lights for the dark winter nights.
  • Make sure you have water and fuel (gels or sweets) with you specially when running longer distances.
Marathon Day

Training was hard, training was lonely and training really impacted on family time so I was pretty relieved when marathon day arrived as it was the end of a hard six months devoted to slowly building up the miles, trying to avoid triggering a seizure.

But most of all I was so excited, finally I had the opportunity of achieving my life goal.  The atmosphere is amazing and I loved every minute of my marathon run.  The crowds really do carry you most of the way round.  I also dedicated a mile to each of the people I have met on my epilepsy journeys who have inspired me and made me the person I am today.  The final mile I ran for my amazing family, and I was in tears that last mile, tears of joy that I was stronger than epilepsy that I could achieve my goals and that I had made it so far. 

When I crossed that finish line I was in tears, someone asked if I needed a first aider and I said no, these are tears of joy, this just means so much.  Because it really did it marked a huge turning point for me, it helped me to believe my epilepsy was controlled, finally after so many years and I also hope it helps other people with epilepsy aim for their goals whatever they maybe.

Image may contain: 3 people, people smiling, people standing, people sitting and child
So I am sharing this today, hopefully to inspire someone to try something they don’t think they can achieve no matter how big or small that challenge might be because if you succeed suddenly you realise you are stronger than epilepsy and if you don’t quite make it today, tomorrow is a new day and another chance to show epilepsy who is boss.

NEXT UP: Be sure to check out Karen’s post tomorrow at Living Well With Epilepsy for more on epilepsy awareness. For the full schedule of bloggers visit

Don’t miss your chance to connect with bloggers on the #LivingWellChat on
June 30 at 7PM ET.