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 next few blogs are going to be slightly different as they follow my journey of training for the London Marathon 2017…yup you read that right! So me a first time Mum, who is not at my physical fittest and also happens to have uncontrolled epilepsy is going to take on the London Marathon; I must be mad! They will be an honest account of how much(or little!) training I do, what its like working that around a 1 year old, the challenges of long distance running and epilepsy and coming back from an injury.
This post is part of the Epilepsy Blog Relay™which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!
Siblings are so often the unseen victims of epilepsy with it affecting their lives almost as much as the person with epilepsy. They are also the unsung heros of those living with the condition, so for this post today I look at how it affects the lives of those who are a sibling to someone with epilepsy and sing the praises of this superstar group of people. I dedicate this post to my own hero my little sister Steph.
Recently I had a conversation with someone who asked how my epilepsy was, when I gave them the quick rundown their response was “Oh well at least you haven’t had a ‘proper’ seizure in a few months.” I just shrugged. What did they mean? I had told them that I had not had a Tonic Clonic seizure since the summer, however my partial (both complex and simple partials) remained unpredictable. At the time I was so used to people not getting it that I let it go, however this was not the first time someone had simply dismissed my other seizure types. I also have had comments such as “well at least you are only having ‘little’ seizures.” Today for some reason I have sat and stewed on this for a while, so I am going to talk about seizure types and why ALL seizures are ‘real’ seizures.
Today I am going to talk about the roulette of Anti Epilepsy Medication (AED’s). It is one of the most common questions I get from women who contact me; “What meds were you on” “What changed during pregnancy” “What do you take now?” This blog may seem like a bit of a moan but I promise it isn’t, I am going to try and give an overview of how difficult it can be to find the right dose of medication or the right combination (it is estimated that 70% of people with epilepsy could be seizure free with the right treatment.) and the misconceptions around it, I know I am not alone when I say it is very frustrating when people don’t understand the complexity around AED’s.
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.