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.
December 2014 saw me lose my 18 month seizure free streak, at the time I assumed it would be just a blip, however as we now know that wasn’t to be the case. What followed was a roller coaster and in the months that followed during my pregnancy and after Noah’s arrival I was grateful just to get through 8 hours, then 8 days. That seemed like an accomplishment, 8 weeks seemed like an impossible task and one I just accepted would never happen again. Three years of uncontrollable seizures meant I never saw an end in sight: how pleased am I to be proved wrong. I almost didn’t write this because I don’t want to jinx it, but if the last three years have taught me anything its that talking about it or not will not change if seizures happen.
I feel an enormous amount of gratitude that I am in this position, I also feel like a weight has been lifted off my shoulders but what I didn’t expect to feel is something else. I am holding my breath. I can’t relax because I am still not convinced that my epilepsy really is controlled, I have gone through a period of 7 years and then 18 months where I had control and it came back. I am on edge because if I relax and my seizures return then something happens to Noah because I am not on my guard I would never forgive myself. I worry that I am not living my life to the full or embracing this seizure free period because I am holding my breath waiting for seizures to rear their ugly head once more. Does everyone feel like this? How many months or years does it take before you stop holding your breath and living in this strange limbo. When does the fear go away, does it ever really leave you?
I feel a huge amount of guilt, why me? Why do I suddenly have control when so many others don’t? So many who are worse off than me?I have done many things over the last four years that seem crazy to the person I was before 2013, I have run marathons, taken on challenges that have put an enormous stress on my body, and yet nothing scares me quite like the shadow of seizures. I think the challenges have been me pushing myself, testing my body, trying to prove to myself, and to the world, that I am not broken, I am not the person who lets my condition define me. Which brings me to my next point…
Who am I without seizures? My epilepsy has defined me for so much of the last three years, who am I without it? My life has revolved around protecting myself and Noah from seizures, every plan I ever make comes with a risk assessment, every trip out of the house has been carefully planned, will I stop this? Can I stop this? I don’t think when it comes to Noahs safety I ever will be able to, I only hope it becomes a subconscious thought rather than something constantly at the forefront of my mind. Then there is this blog, can I keep writing about epilepsy if my seizures are under control? Does it make me a fraud to keep talking to people, telling them I get it, that I know how they feel when I have spent X amount of time seizure free. I like to think I can still have an impact I have recently committed myself to a research project with GOSH and UCL. I like to think that no matter how long I am seizure free that I can make a real difference for others living with the condition.
The early days of being seizure free is a funny old place,holding my breath, daring to hope that this time might be the time that you finally make it to years seizure free rather than months or days. Holding my breath praying with every bit of my being that I am become one of the lucky ones. The truth is I don’t think it matters how long I am seizure free, I will never be rid of the black cloud of seizures, I will never stop holding my breath.
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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.