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.
How do I feel? A whole mixture of things, grateful, overwhelmed, tearful but also wanting to laugh hysterically! As I said I wrote a whole blog, that was measured and tried to sum up all I felt about this milestone, but I don't think it did it justice, it was rational rather than from my heart, and let's face it a day like today is all about feeling rather than practicality. The run up to the anniversary was a bit of a roller coaster, back in January I was so anxious, crazy as it seems the further I got away from my last seizure, the nearer I got to that holy grail milestone the more nervous I got! It was a reminder, that no matter how long I went seizure free that fear, the anticipation of a seizure would never leave me. I am not naive to being seizure free having spent 7 years without them, back then I was naive, I believed I was ‘cured’ that I would never have to think or worry about seizures again but 2006 changed that for me and never again will I live in the blissful ignorance of those times. Funny isn't it you think you’d relax the longer I went without a seizure? But I think it's a feeling those who live with epilepsy or love someone with epilepsy will understand. That even in the good times, even when its years since your last seizure the purple cloud always looms.
It's the biggie isn't it, going a year seizure free, a whole new world almost opens up...you can drive again. For me though the days of wanting to go hours then days are still so fresh in my mind and I find it hard to believe we are here. Coming to from the seizure last year I didn't know that would be it for a year, you don't ever know do you? And I honestly think the worst part of living with epilepsy isnt the seizures, it's the anticipation, the not knowing, for family the heart stopping moment the phone rings or you discover your loved one in a seizure. Im lucky to be here but I know for many dreaming of a year seizure free seems like an impossible task, and I'm not naive or ignorant enough to forget that feeling, remembering that was me for so long. As I sit here reflecting on this last year I am mindful that for some reaching a year seems like the impossible, that they are grateful for the days, hours, weeks that they go without seizure. I was once there too, counting the hours between complex partial seizures, then the days before finally the weeks. It is the most draining thing to have to live with it, and I know it has caused those close to me untold anxiety as they too live with the purple beast. Epilepsy has changed my life in so many ways and they have been highlighted more so this year.
The last few weeks have left me very thoughtful and thankful for those around me. Its given me time to reflect on those who over the last 4 years have given so much of their love and time to me to make sure I had as much of a life as I can. Its only with the support of those that I have got here. Chris who lived every miserable second of it all with me, who I finally see relaxing a little more. He always swore he never worried about Noah's safety when he was with me but it cant have been easy. My sister who so often stepped in to parent Noah no longer freaks out when I don't answer my phone the first time. Alex who all but lived with us, I like to think any pressure or worry she felt has eased. More than anything I feel like less of a burden and that feels like a weight off my shoulders. My family and friends will always insist I was never a burden but I know that's not the truth and I see it in how lighter they all are now.
It's taken 4 very very long years to get here, many drugs changes, a lot of tears and challenges as well as Keppra! It pushed me to my limits, if you take one thing from this know that treatment for epilepsy isn't an exact science, that it can take years and many combinations to get it exact to control or reduce seizures. I do have to thank my neurologist and epilepsy nurse, I wouldn't be sat here today without them. Noah wouldn't be here without them. He always gave it to me straight and talked sense into me when I had had enough and throwing my toys out of the pram. I owe that man our lives and we will be forever in debt to him. Although when I said this to him in December I got a “Im just doing my job” reply, remarkable man 💜
This years opened up so much, I've trained as a swim instructor and in August I will be taking my next qualification, I love what I do and am so grateful I get to do it. However one of the biggest changes this year has been my beautiful, funny, caring, empathetic boy. In his almost four years on this earth I have seen him witness more than I would have ever wanted him to. He, thankfully, takes it all in his stride. His Pre-School say he is very alert to those around him who are hurt or distressed and we maintain this comes from always watching me. This last year or so he has taken more interest and asked more questions, we have always been honest, we will always answer the best we can. We always agreed that when I had a seizure we wouldn’t remove him from a room unless he wanted to go, because what he imagined would be far worse. He had to see that Mummy would be ok and recover. As I have gained control this year I have gained confidence and it has allowed me to do so much more with him, we have a blast together on days out and it’s on days like this that the dark days of his first year seem a lifetime ago. I feel guilty when I have to have a nap when he is about, when he says to me Mummy stay down here, but I know I have to to make sure I am in the best health for him. He understands when I say I am poorly, he knows never to leave my side if I do have a seizure. We have taught him our address, his full name as well as those of the people closest to us. I have not yet taught him to dial 999 as I don't trust him not to ring them daily! He does however know my phone isn't locked and he can call anyone on there and there will be help. As my confidence has grown this year I have seen a huge change in him, he isn't so anxious being away from and I am so pleased. He will grow up knowing everyone is different and everyones brains work in different ways, but that's ok because that's just the way we are built. I am beyond proud of him and how he copes and the little boy he is becoming
My life doesn't magically change on the 26th March 2019. I still have to take my medication twice a day every day, I still have to nap because the medication makes me tired, I still have to balance life and avoid triggers to stay healthy. I still wont bath, the support network for Noah remains in place. I still always tell people where I am going and which route Im taking. I still fear more than anything having a seizure and not waking up. Because that's our life and thats life with epilepsy. It's like the annoying relative you don't really want to be around but you have to humour.
The epilepsy coming under control has also helped me to find peace with a lot of what happened. I don't think Chris or I will ever forget what we went though to have Noah and the years that followed, but I think we have both learned to look back and be thankful rather than be consumed by it, I know I have and its helped me find a balance. I sometimes wonder how the blogs still going, it's a world away from what I started writing about, but more and more these days my work is advocacy, being a voice for those with epilepsy, and for as long as change is needed I will continue to do that. It also means sometimes the writing takes a back seat. As we have entered March I have had two seizure warnings, they scared the life out of me, but both times I have listened to my body and slowed down, they have been the reminder that I can never take my health for granted.
I will spend Purple Day and my One year anniversary down at Young Epilepsy where myself and Noah are taking part in a swimathon with them. I am grateful for the invitation to spend the day with a charity that has done so much for us over the years and given us so much support. I am grateful for the purple family I have built over the last few years, who cheered on the good days and pulled me up on the bad days. I as always will go to bed on the 26th thanking my lucky stars for another day seizure free as I do every night. (Link if you wish to donate www.justgiving.com/fundraising/youngepilepsy1 )
What I won’t tell you is that it gets better, because this condition is so unpredictable, I won’t tell you it gets easier because honestly there are days that it is as hard as that very first day. It doesn’t get easier you just get stronger. Living with epilepsy means that you learn to live your life in a way that maybe wasn’t planned but works with this condition rather than against it, and right now that's where I am. Living the best life I possibly can, I am content, I am happy, Im at peace and more than that I am hopeful. And that is the strongest tool we have in the fight against epilepsy.
I hope you all spread a little purple pixie dust this Purple Day and spread a little awareness. Why does it matter so much? Because once upon a time I didn't have epilepsy either!
Happy Purple day all 💜
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.