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.
Sorry to disappoint! This isn’t an announcement of Faye being pregnant with our second child; trust me I’d think of something much more entertaining than a blog post if that situation ever does happen. This is actually a post about my fears about us trying for a second baby. A fear I’m sure many men who love a woman with epilepsy have had throughout time.
Happy 3rd Birthday to me! I can’t quite believe I am writing that, I always maintain that I never believed anyone other than my friends may read the blog; turns out I was wrong. The older posts pop up on Timehop and it takes me back to time and places now that seem like a distant memory, it also helps me remember times that the epilepsy was so awful it affected my memory of that period. It reminds me of the darker days and makes me take stock and remember how lucky I am, it also reminds me the absolute highs the last three years have brought. The highest of them all being Noah.
As I write this I have been 8 weeks seizure free today, 8 whole weeks!! It won’t seem like much to many but to me it is an eternity. Once upon a time it wouldn’t have meant much to me either, but after having lost control of my epilepsy for the last three years these 8 weeks, 8 precious weeks mean the world to me.
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.