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.
‘Professionally’ (because this often takes up as much time as a job!) this year has been a success. I was lucky to be a finalist at the National Diversity Awards, I have seen the support group grow, my inbox receiving new messages constantly, my reader numbers increase. However, what I determine my ‘success’ on is the number of ladies who have had babies, who are currently pregnant who include me in their journeys. The ladies who publicly or privately thank me for what I do and tell me they couldn’t have done it without the blog/support group. That the blog gave them hope, the support group gave them friends, that it’s the reason they decided they could have a family. The ladies who felt alone and were put off by other groups who only shared horror stories, that slowly made their way back to my group on my assurances that you are all the nicest people in the world full of nothing but support and love. The women who live locally that wish to meet up for coffee because they don’t know where else to turn. This year we have seen warnings added to Sodium Valproate boxes for girls and women and a flurry of press coverage that has accompanied it. I like to think I have played my part in ensuring a balanced view has been heard, especially when it concerns SUDEP, a subject I am passionate about.
With Noah getting older I have questioned many times this year where I go with the blog and my campaigning but this week alone has given me the answer to that. I have had two emails that have stuck with me and troubled me. The first was from a lady who is expecting and felt alone until she found the blog. Three years on beginning the blog this is still happening, there are still women who don’t know where to turn. The second left me furious, a lady contacted me telling me that because of the medication she was on the doctors had suggested a termination. My blood boiled at anybody being put in this position, the lady knew the risks of the meds this wasn’t an unplanned pregnancy and yet health care professionals are pushing a decision that is not theirs to make! For long as I have breath in my body I will fight for women with epilepsy to get the care they deserve in pregnancy, that it isn’t a postcode lottery, I will work to ensure that they know the risk of medication but equally those risks are balanced against any benefits.
Another way I am moving forward in 2018 is that I have been asked to be on a Steering Group for a research project with UCL and Great Ormond Street to transform the mental health treatment for children and young people with epilepsy. A board had to approve those to sit on the committee so I cannot begin to tell you what it has meant to me that they believe me worthy, because of my work over the last three years, to sit on the group. I passionately want to do anything I can to improve the lives of young people with epilepsy. Moving forward in 2018 I will also continue my work to ensure that everybody with epilepsy has access to an epilepsy nurse. I am so excited for what 2018 will bring. As this is published I am also days short of being 11 weeks seizure free, I still pinch myself every day, Christmas has always been a notoriously difficult time for me with epilepsy so I am thanking my lucky stars more than once a day that this streak continues. The new year sees an appointment with my own Neurologist and some difficult conversations to take place, I want to reduce my meds because they are higher than before Noah but I think I know his answer :) I will talk about everything else once I’ve had the appointment and I am ready, but it is another stark reminder that epilepsy is still very much part of our lives.
As for me and the blog? I will continue to write for as long as people reading. As long as there are emails landing in my inbox I will continue to answer, so please don’t ever think you are bothering me or that I don’t have time. I will ALWAYS find the time. I am so proud of what I have achieved, I am so proud of the community that has been built on the back of the blog, I love what I do and I don’t want to stop. Lastly and most importantly thank you for letting me into your lives, thank you for sharing your hopes, dreams, fears and babies. You will never know just how much it means to me. May 2018 be a happy healthy one for you all and your families.
Happy 3rd Birthday to us all, because without you there is no blog. x
Facebook page: https://www.facebook.com/fairyfaye1986/?ref=aymt_homepage_panel
Facebook support group: https://www.facebook.com/groups/739520702798749/
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.