Purple Is The Colour Of My Life

Sunday, 26 March 2017

Today is Epilepsy Awareness Day, also known as Purple Day. Not many people are aware of Epilepsy and the difficulty it brings to peoples lives. I have said it before, but even though I do live with the side effects of my condition and struggle with them daily, I'm lucky enough to still be able to live my life with limited restrictions. But that doesn't stand for everyone.

My diagnosis was very long winded, it took years actually. And even after being diagnosed it was still a very long and painful process. The day my consultant told me I was Epileptic he handed me a prescription for anti-epileptic drugs and sent me on my way. As it was the first time I had ever been diagnosed with anything, I wasn't aware of how much more really should have been done.
The after care was nonexistent until I ultimately cracked and pretty much had a breakdown. I had never taken medication before, and my body hated it. I was struggling with almost every side effect. The weight gain really badly effected me, and just the fact that after so many years of tests with no out come suddenly turned into a condition that would never go away just got on top of me.
I cried all the time, I was so low and so far from the person I was. Which led me into the doctors surgery to then leave with anti-depressants, and all of the original information I should have been given on the day of my diagnosis as well as a referral to a specialist nurse and support groups.
If my diagnosis was carried out correctly I can hand on my heart say I would never have gotten into the mental state that I was in at that time.
Through then getting the care and support necessary to stabilise my condition, the anti-depressants were no longer needed but is closely monitored. I've since found out I actually suffer with 3 different types of Epilepsy, so finding the right medication to become seizure free has taken almost 4 years.

Now you know my story, it's time to find out more about Epilepsy. Epilepsy is a neurological condition that affects the brain and is much more common than you would think, 600,000 people in the UK suffer with this neurological condition. The condition can start at any age, there are many different types of this condition and some can even be grown out of, but that's not the case for everyone. Sometimes Epilepsy can be secondary to another medical issue such as a Stroke or Head Injury, but in more than half of the people suffering with Epilepsy there is no obvious cause found. In some cases it could be inherited from family, scientists are still looking into how this can happen.

You may have picked up on me saying I suffer with 3 types of Epilepsy. Yep, there's actually around 40 different types of the condition and it's common to suffer with more than one form of Epilepsy. Someone may start to stare off into space and become unresponsive for a while, could be seconds or minutes and that is a seizure. Another person may start to have spontaneous arm movements or jerking, that's also a seizure. Someone getting a sudden intense feeling of fear or a sinking feeling is also a type of seizure. It's not what you would typically think a seizure would look like is it? When you say 'I'm Epileptic' most people go straight to flashing lights and dropping to the floor and convulsing. But it's so much more than that. Everyone suffers differently and everyone has different triggers or may not even have a trigger they are aware of.

Something else that many people haven't heard of is SUDEP ( sudden unexpected death in Epilepsy ) and there's no found cause for a sudden death of someone with Epilepsy. It's rare and affects around 500 people in Britain every year. There is not a lot known about SUDEP apart from it usually being associated with a Tonic Clonic seizure, which can happen while awake and also while you're asleep, also known as Nocturnal Epilepsy. It is rare, but it happens. Premature death is higher in people with Epilepsy than in the general population and SUDEP is the most common cause.

Epilepsy is severely underfunded. I am once again with out a specialist nurse in the community for a second time round, and the Epilepsy specialist nurses within my local hospital are too stretched to take on any more patients. Research into the condition is underfunded and so is the vital research into SUDEP. Epilepsy is one of the most serious neurological conditions in the UK yet people are unable to get the help they need and researchers are being held back due to funds. Which really does need to change.

Don't know what to do if someone is having a seizure? Epilepsy Action have an E-Learning Module to show how to react, which you can find Here
Happy Purple day!
Emily-May x


  1. I'm so sorry you had such a rough time getting things sorted with your epilepsy, it's sad when the aftercare isn't there. Although I'm happy you finally got your medication sorted and it sounds like you're back on track with other aspects of your life.

    My diagnosis was long winded also, although mine originally happened when I was about 8. It's been quiet for 7 years and has just come back at age 24! It's very sad, I'm loosing my licence and a lot of freedom in my opinion, it's going to be a difficult adjustment. I'll actually be putting a new post live this weekend about my re-diagnosis and it also explains how I'm doing Tough Mudder to raise money for Epilepsy Society if you're interested in sponsoring :)

    Kim // www.sincerelykimberly.com

    1. I'm yet to find someone that had a smooth diagnosis which is a massive shame. Sorry to hear it's creeped back, hopefully it can be controlled for you again soon x

  2. I'm shocked at the way your diagnosis was handled, I know that hospitals are so stretched, but taking an extra 10 minutes to explain or to be given leaflets would have been so important for you! I'm so glad your GP was able to help more constructively xx

    Golly Miss Holly