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.
I knew there would be lots about becoming a Mum that I didn’t know, I, I didn’t know how it was possible to love someone so much it hurt, how the sound of my sons cry could be the most beautiful thing I had ever heard or equally that it would be enough to nearly drive me crazy, that I would realise I had always taken a cup of hot tea for granted or that sleep deprivation would turn me into Frankenstein’s Monster (pass the red bull and quickly). You know what else I have learned? Women are mean! Parenting is the hardest thing in the world to do but the easiest thing to have an opinion on.
So two weeks ago was the first time I saw my neurologist since I had had Noah, he had popped in during my appointments with my epilepsy nurse but this was my first appointment with him directly. I had a huge list of stuff I needed to talk to him about, mainly keppra, which was destroying me and my relationships with people closest to me.
I have been gritting my teeth of late as I have watched sales rep after sales rep claim that Juice Plus can help medical conditions, gain world peace, solve world hunger and stop natural disasters (ok the last few bits may be an exaggeration on my part but that’s what it feels like). I have watched time and time again as these Reps with no (or very little) medical knowledge claim this product is safe for those with epilepsy, that it can or is proven to help or decrease your seizures, safe for those who are pregnant and can help a number of other medical conditions. REALLY????
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.