Recently I had a conversation with someone who asked how my epilepsy was, when I gave them the quick rundown their response was “Oh well at least you haven’t had a ‘proper’ seizure in a few months.” I just shrugged. What did they mean? I had told them that I had not had a Tonic Clonic seizure since the summer, however my partial (both complex and simple partials) remained unpredictable. At the time I was so used to people not getting it that I let it go, however this was not the first time someone had simply dismissed my other seizure types. I also have had comments such as “well at least you are only having ‘little’ seizures.” Today for some reason I have sat and stewed on this for a while, so I am going to talk about seizure types and why ALL seizures are ‘real’ seizures.
Today I am going to talk about the roulette of Anti Epilepsy Medication (AED’s). It is one of the most common questions I get from women who contact me; “What meds were you on” “What changed during pregnancy” “What do you take now?” This blog may seem like a bit of a moan but I promise it isn’t, I am going to try and give an overview of how difficult it can be to find the right dose of medication or the right combination (it is estimated that 70% of people with epilepsy could be seizure free with the right treatment.) and the misconceptions around it, I know I am not alone when I say it is very frustrating when people don’t understand the complexity around AED’s.
I knew there would be lots about becoming a Mum that I didn’t know, I, I didn’t know how it was possible to love someone so much it hurt, how the sound of my sons cry could be the most beautiful thing I had ever heard or equally that it would be enough to nearly drive me crazy, that I would realise I had always taken a cup of hot tea for granted or that sleep deprivation would turn me into Frankenstein’s Monster (pass the red bull and quickly). You know what else I have learned? Women are mean! Parenting is the hardest thing in the world to do but the easiest thing to have an opinion on.
So two weeks ago was the first time I saw my neurologist since I had had Noah, he had popped in during my appointments with my epilepsy nurse but this was my first appointment with him directly. I had a huge list of stuff I needed to talk to him about, mainly keppra, which was destroying me and my relationships with people closest to me.
I have been gritting my teeth of late as I have watched sales rep after sales rep claim that Juice Plus can help medical conditions, gain world peace, solve world hunger and stop natural disasters (ok the last few bits may be an exaggeration on my part but that’s what it feels like). I have watched time and time again as these Reps with no (or very little) medical knowledge claim this product is safe for those with epilepsy, that it can or is proven to help or decrease your seizures, safe for those who are pregnant and can help a number of other medical conditions. REALLY????
I don’t even really know where to start with this blog post because I have so much I want to include but at the same time I haven’t had enough about me to put pen to paper. I did intend to cover my latest neurology appointment but as I have written this the before bit has ended way longer than I intended. I’ve realised that I haven’t given a general overview of our life recently and life has been a rollercoaster of late so I will do my best to cover it all.
I found out in October 2014 I was expecting my first child, what followed was a rollercoaster of a pregnancy, mainly because I suffered from hyperemesis gravidarum and also because I happen to have epilepsy. I have composed a list of 5 things pregnant women with epilepsy want you to know…
This post is part of the Epilepsy Blog Relay™ which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!
My topic this time around has been stigma, I had a long hard think about an area that epilepsy still needs more awareness and then I came up with this… Epilepsy & Employment.
I could talk about this issue for hours, I have been fortunate that I have had some brilliant managers who are very understanding but I have also been the other side of the fence and seen how badly epilepsy in the workplace can be handled. For those of who follow me on Facebook you will know I recently made the choice to return to work having left my last employer following having Noah. It was a huge step for me to regain some independence and confidence, I am fortunate that my manager is very understanding and I was also very honest about my life as it is now and so far that seems to have paid off and everything is going brilliantly. But like I say I haven’t always been that fortunate, so I asked others for their experiences and this is what I have come back with…
As I have said before our little boy is so loved and cared for, so I decided to celebrate Noahs 1st birthday a bit more and mark it with a post of birthday wishes and photos from Chris and some of those closest to Noah…
What can I say you’re one already, I think I blinked and this year has disappeared. That said it has been the best year of my life because I met you and I get to be your Mummy. Every day you surprise me and every day you make me so proud I could burst, the thing no one was able to explain to me before you came along was just how much I would and could love you, how every time you cried it would physically pain me (even if it is my fault because I won’t let you play with Patchs water or eat his food!) Nobody told me that you would become my favourite person to be with and that I would miss you desperately anytime you aren’t with me.
My names Faye, mostly known for being a tea addict and keen runner. I'm 30, 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.