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.
Our 4th wedding anniversary! The years have flown by, well I say 4th I have started writing this on the 1st November, you are currently in surgery and it has given me time to think. Having Noah has been the best thing that ever happened to us, but so often it means we are Mum and Dad and being husband and wife gets pushed down the pecking order, but sat here now I am not thinking about you as a Dad but as my husband and best friend.
SO November is Epilepsy Awareness Month and I know I have been unusually quiet, this blog will go some way to not only explaining why but also addressing a serious subject. Today I will be looking at Epilepsy and stress, there are so many triggers for seizures but for me, and many others, stress has always been a big one.
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.
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.