Someone pointed out to me that not only is this week Epilepsy Awareness Week it is also Mental Health Awareness Week so I decided to try and tie the two together. I am cheating a little bit for two reasons, 1) in the interest of time, I have been on the go with Noah all day and shortly am getting ready for the Young Epilepsy Champion Awards 2) because it highlights that mental health isn’t just depression it can be a range of things. Epilepsy and mental health issues can often go hand in hand but are rarely talked about. I struggled with anxiety hugely during my pregnancy, and now, as much as I don’t like to admit it: it is still there. It isn’t anywhere near what it was but it is there. This post was originally published in January 2015.
Blog 7: http://fairyfaye1986.weebly.com/blog/blog-7-the-truth-im-struggling
Not the original plan
This post was not meant to be from me, it was meant to be from Chris perspective. However there’s a subject I feel I need to touch on whilst it is an issue. Apologies if this post is rambling but it’s a reflection of where my heads at at the minute.
The truth? Im struggling.
Believe me that one sentence is not easy to admit to, however after two lots of tears today to both Chris and Steph (my sister) I feel like
its a subject I need to address. Firstly I want to say thank you to them both. I know they are both living with a shell of the person they know and love but both have unlimited amounts of patience with me. I actually have tears as I write this because Id be lost without them, and the public acknowledgement of what they do is only the start of the way I can say thank you for everything you both do.
The silent issue
Anxiety and epilepsy is something that often goes hand in hand, yet not a subject that is ever really covered, why? I don’t really know. For me maybe it’s the stigma I feel that comes attached to it. Or the fact that everyone always see me as having it so together that admitting I’m finding things hard isn’t easy. After a slight improvement with the absences after the last med increase I felt positive, things were not great but we were coping. In Chris words I wouldn’t shut up which was a sign of the absences being less frequent. However over the last week they are making my life hell. I am missing things, repeating myself because Im dazed and confused. The auras are relentless and my skin feels like its crawling (a sign of seizure activity). I can’t stand being touched because of it, so please don’t take offence if I just shrug you off, it’s not personal. There have been days Chris has got up to find me just laying on the landing because the fuzzy head is just
too much, and I see the worry in his eyes, however he just deals with it calmly because he knows panicking will just make me a million times worse. I’ve noticed the subtle changes he makes with minimum fuss, like always pouring my drinks in plastic cups because I know he is worried too that Im going to hurt myself, and it pains me to see it.
My coping mechanism for dealing with anxiety are both productive, and then some not so much. My biggest release is running, however due to an injury that has been off the cards. My sister has agreed to swim with me once a week to try and combat some of this. For me this just leaves me feeling like the ten year old who needed my seven year old baby sister because no one could protect me in the same way she does. Its hard to express how totally disheartening this is. She has a seven week old baby of her own and a four year old, but nothing is ever too much to ask of her. IF anyone ever wonders why we are so close, there is your answer.
The other ways arent so healthy. I am an utter control freak. The minute the epilepsy becomes uncontrollable this goes into over drive. The house has to be spotless, and if its not its enough to send me into melt down. I have to have routine and everything has to be my way or its just too much to cope with. As for changes, that's a big no no at the minute. Bit of a problem really when we are facing one of the biggest changes to our life. I am well aware that this makes me impossible to live with, and I can only say Chris has the patience of a saint because he tolerates it without question because he knows its what I need to do.
Whats causing the anxiety?
Lack of control, feeling like this is never going to end. Over the last week I have cried more times than I want to admit to. Mainly because
Chris is working nights and every night he leaves I feel vulnerable. I feel guilty that he goes to work knowing Im upset, but thats life and I just have to get on
with it. I cry because I cant even go swimming without my sister. I get upset because boiling the kettle, leaving the house on my own, showering and a whole host of other everyday activites leave me scared. I am the first to say you should never live in fear of the epilepsy because then it wins. However I also forget how bloody hard it is.
I am so tired all the time. Im sleeping 13/14 hours at a time because my body just cant handle it. This is not me at all, Im normally being moaned at to sit still for
five minutes, something I was incapable of before I became pregnant.
My biggest fear
What scares me? I still feel like a TC seizure is brewing and Im frightened Im going to hurt myself. Not because Im worried about myself, hell Ive spent
many a time in A&E because of burns, cuts,sprains, head injuries and many more injuries because of it. Now I have a baby to protect, and whilst I dont care what injury I sustain I will do everything in my power to protect the baby, but the sad truth is I cant protect baby from a seizure anymore than I can protect myself.
So what do I do.
I carry on as normal. I get up I go to work, I go out and see friends because what choice do I have? I cant curl up in a corner until this passes. My only hope is that the latest drug increase starts to work before much longer. I dont want pity or sympathy, thats not why Im talking about this. Again its because I promised I would be honest in this blog and tackle the issues that are so often left in the dark, and to highlight that its not just my life this impacts on.
All I can ask of those around me is that you have a little patience. Im finding it hard, but I am trying my best.
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.