An email landed in my inbox late last week, announcing a briefing from the MHRA concerning the regulatory measures for the safe use of valproate. I sat up sharply and paid attention, the valproate advocacy work had been slightly quiet of late (or I’d been a bit side-tracked by studies!) but this was the first contact I had for a while.
I love this theme for this year's SUDEP Action Day. I have been thinking about it for a few weeks whilst thinking about putting pen to paper, but what surprised me was it made me think up little ways in which I could speak up. It isn’t always the big things that make a difference, my own example was seeing a friends Instagram video that was a bit “flashy” , my friend was ace, put a trigger warning at the start of the video, and told me how it helped her and would maybe prompt others. That small stone casts a ripple.
Epilepsy is a funny thing isn't it. You think you have got to grips with it, you think you have it sussed and then it finds a way to remind you you're not in control - and that is forever the feeling I detest.
This year the message for SUDEP Action Day is a simple one. Take 5. Whether that be five minutes to educate yourself about SUDEP, five minutes to share information online, five minutes to contact your MP, or 5 minutes to make the decision to fundraise, campaign or raise awareness. It’s not much to ask at all when you realise that by taking five you may just save someone’s life.
Cameron Boyce, not a name that met anything to me and when news of his death broke on 20th July I was so caught up in my grief for my own Mum that I didn’t bat an eyelid. That was until the family released a statement saying “He passed away in his sleep due to a seizure which was a result of an ongoing medical condition for which he was being treated.” My inbox, texts and facebook went nuts as it always does when seizures/epilepsy hit the headlines. Then today 31st July the coroner ruled that he died of Sudden Unexpected Death in Epilepsy. My heart broke, for his family for his friends and for those who will find out the risks of their condition through social media and the news.
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!
My names Faye, mostly known for being a tea addict, swimmer and now Paralegal and part time student. I'm 36, married and I had my 1st (and only) child in June 2015. Oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy and the voice I have become for those with epilepsy.