We so often teach children about stranger danger but how often do we ever touch on the fact that someone you don't know, someone you may never set eyes on again could end up having the biggest impact on your life, being your saviour at your worst moment.
A whole year seizure free, 365 days. This isn't the blog I wrote originally, this isn't the post I agonised over for days. This is the post written on my phone laying in a hotel bed the night before I can finally say I am a year seizure free.
I have tried to write this so many times, in so many ways over the last few weeks, but what has ended up on the page has been a total jumble. In many ways it is a very clear reflection of my mind when it comes to Post Traumatic Stress Disorder (PTSD) and trying to process the events of my pregnancy with Noah. This blog is my experience, what has helped me and how PTSD has affected our lives, as ever I can only speak about how it has been for us, and as we discovered PTSD is very personal to each individual. Four years ago today I had a seizure and fell down tube station stairs, the events of that day have set me on a path I neither want to be on or know how to handle.So today I've decided to talk about realising that I had a problem and how I went about getting help, hoping it shows others they are not alone, others opening up to me saved me and I hope someone else takes comfort from this.
I am very late to write this but it has taken me a while to be brave enough to share the photos and experience, but as I always said I’d be honest - I guessed it was time to share this too. In all honesty I was embarrassed, I was embarrassed by the photos, embarrassed by how I looked and embarrassed about having to have it done at all, I felt very vulnerable and exposed.Back in September 2018 I had a home Video Telemetry to try and get to the bottom of my seizures, as it happens by the time the test had been sorted I had been on Pregabalin for a while and some sort of seizure control for the six months prior. I always said Id be honest and whilst its taken me a bit of time I thought I’d put this together to help put anyones mind at ease who is due to have one and also pass on the hints and tips for preparing a toddler for their home becoming a glorified hospital!
SUDEP (Sudden Unexpected Death in Epilepsy) is one of them things, no one wants to think about it, no one wants to believe it happens and nobody believes it will happen to someone they love, that is why this years campaign from SUDEP Action is so very important.
Awareness isn't enough its time to ACT!
Sunday saw me take on Royal Parks Half Marathon for the second time. I would love to say my come back at Royal Parks was a fairytale sunny day, it couldn’t have been further from the truth; the skies opened and torrential rain was the order for the day for my final ever distance run and I now have a chest infection for my efforts!
Saturday 14th July saw myself and Noah heading down to the Olympic Park for the Women with Epilepsy Picnic in the park. It has been organised by Kim Morley and Epilepsy Action. I was hesitant about going, my old fears of tube stations was niggling and just getting out the house this morning seemed a struggle, but boy was I glad I pushed through.
To my darling boy, the one who stole my heart,
And boy have you stolen my heart. I loved you as a baby, you were so tiny and fragile, but now I fall in love with you a little bit more every day for the little boy that you are, for the person you are becoming. It has been a magical year.
People with epilepsy are in danger of having no where to turn when they need expert and often life changing support …. Half the calls to Epilepsy Action are missed due to lack of funding and increased demand. This sentence alone from Epilepsy Action made me go cold. THe whole reason I started blogging was a lack of support, and now one of the biggest epilepsy charities have confirmed my fears that people with epilepsy are not getting the support that badly need and deserve.
I wasn’t going to bother writing this post as Chris had covered part of the appointment and had covered it so well, but I’ve decided to as I almost see the blog as a diary and I want to be consistent and make sure I cover everything.
My names Faye, mostly known for being a tea addict and keen runner and swimmer. I'm 32, 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.