Monday 23rd October is SUDEP ACTION Day, SUDEP (Sudden Unexpected Death in Epilepsy) is a topic I have wanted to cover for a while, but equally it’s a topic I feel strongly about doing justice. So what better time to look at the topic than SUDEP ACTION day, because it is time we took action, a staggering 42% of Epilepsy deaths ARE preventable! NICE guidelines state that ALL doctors should discuss SUDEP with patients but sadly that is not the case, personally I had not heard of SUDEP until I came across the term in a support group in 2011, and my Neurologist never mentioned it until I was pregnant with Noah in 2015 at the age of 29! I have lived with epilepsy for 22 years by this point.
Inspirational is a word thats been thrown about quite a bit in relation to my Royal Parks Half marathon. I dont for one bit feel inspiration or strong or any of the other words levelled at me. So after a run that didnt go to plan I am putting pen to paper. Its time to look at what happens when epilepsy interupts life and what was actually going through my mind on Sunday.
Sodium Valproate has been part of my life for as long as I have had epilepsy, it was the first drug I was put on as a child and it worked for me and was again reintroduced to me at 21. So it has been a strange few weeks seeing it all over the news and I feel like it is time I spoke up. Today (Tuesday 26th September 2017) the European Medicines Agency (EMA) held a public hearing as part of its safety review on the use of valproate-containing medicines in women who are pregnant or of childbearing age. This is the first time a public hearing has been held during an EMA safety review.
Raising a toddler is probably some of the most fun I have ever had, its magical and every day is an adventure but it is also the most frustrating, tiring stage I have come across yet. When I started this blog all I could think about was how I was going to keep a defenceless baby safe, not once did it occur to me to think about how I was going to manage when that tiny baby started moving, got a mind of his own and a strong will to go with it. My life is a constant risk assessment of how to keep Noah safe, if we go somewhere new it brings anxiety as I work out how I could handle situations if they arose. The goal posts have totally moved, so todays blog I will look at life as a Mummy with Epilepsy to a toddler and the problems I face and some of the ways I try and combat them.
I have thought long and hard about writing this post as it is SO personal for me but equally I said I’d always be honest so here goes…..
My darling Mr Noah,
Happy 2nd Birthday Bud!
For just a moment, I can sit down, take a breather, and write you this letter. I have just put you down for a nap, its the only time I get to be still these days and the only chance I get to write you this letter.
A Sunday well spent brings a week of content, that could not be more true of how we have spent Sunday 7th May. Today myself, Chris and Noah took part in the third Purple Walk for Young Epilepsy, a 10K walk aimed at all the family followed by fun and games on the lawn of Waverley Abbey House.
In words of Noah "I DID IT!!!" This isnt the post for me to talk about my journey yesterday but the one for me to talk about the remarkable people I carried with me. As you all know I dedicated each mile of my London Marathon to a person affected by epilepsy. I asked each person to give me a short insight to their life/experience with epilepsy. I wanted to show that epilepsy has many faces and affects people in different ways. These are the stories I have been told, these are the many faces of epilepsy These are “my” 26. Please have a read and if you wish to donate you can do so here: justgiving.com/faye-waddams . I have left all the paragraphs as they were sent to me so you get a real insight into each person.; behind each person is a whole family affected by this condition. Thank you to you all for allowing me the honour of running with you and your loved ones. What I did Sunday is nothing compared to the battle these guys face every day with epilepsy. You carried me every step of the way, I only I hope I did you proud.
To the girl in the waiting room,
You don’t know me, but I know you because I have been you. I have friends who have been you. Right now I am watching you and its clear you feel like your whole world has fallen apart, you are devastated and full of questions. Wondering if the life you imagined is still possible, what this means for all your plans. I have been you twice, once as a child with no comprehension of what was going on - an ignorant bliss to be honest. The second time as a 21 year old; I too cried, I too broke my heart and wondered what was to come. I watch as you are clearly embarrassed about having this condition, barely wanting to say its name.
March 26th marks Purple Day, a day to spread awareness and shine light on the condition I spend everyday living with…Epilepsy. For me this year it has double meaning as it is also Mothers Day in the UK, so I will be spending my second mother’s day with my precious baby Boy. To mark the occasion myself and other epilepsy bloggers that I know have decided to write a series between us titled “Don’t Fear the Purple” looking at how epilepsy has shaped our lives and the positives we can draw from it. If you enjoy the blog look for #PurpleTogether to read others inspiring journeys.
My names Faye, mostly known for being a tea addict and keen runner. I'm 31, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.