First family holiday
So I’m a week behind on watching Epilepsy & Me due to taking Noah on his first holiday and two weeks behind in publishing this blog as two of our best friends got married this weekend (photos below). We have had an amazing time over the last few weeks and I fall in love with my beautiful boy more every day. He is getting more alert day-by-day, is so curious about the world around him and I am getting big smiles from him, granted normally at 5am when he should be sleeping! On our return from holiday I was eager to sit down and catch up. Young Epilepsy is an amazing charity and do some unbelievable work, and they have been a great support to us throughout my pregnancy (despite me being past the ‘young’ bit of Young Epilepsy), as well as throwing a fabulous evening for the Champions Awards.
As I go through this I will be talking about my own experiences, because for people who have seen it the programme explains far more eloquently than I ever could what life is like with epilepsy. No two people have exactly the same experiences, but by using what I have seen on the screen I can try and give people more of an insight of my own journey of epilepsy and me, as well as having the privilege to talk about these inspirational individuals.
Epilepsy hitting our screens
When the email first dropped into my inbox from the lovely Shannon at Young Epilepsy I was curious, this was a huge deal, it is not often that epilepsy gets this kind of exposure so I was very keen to see what and how it was portrayed. In the week I had been away I had seen some amazing feedback on the programme and put off watching it as Chris wanted to watch it too. The first thing that struck me was the hard hitting opening – that epilepsy IS life threatening with no cure, and no warning as to when it will strike. That half a million people suffer with epilepsy and there are THREE deaths a day from the condition was one hell of a way to get peoples’ attention. For me there were themes that run through the programme, and often ones I could identify with. The total loss of control, frustration, anger but of people determined not to let this condition rule their lives. It was uplifting to watch as well as painful for me.
There were elements in all of those featured that I could identify with. I think that’s the thing with epilepsy, no two cases are ever the same which is why it is so hard to understand, but you will also find that people will identify with what others are going through even though the situation isn’t the same.
Amy: It is not a competition but I am aware that her epilepsy is far worse than my own so any comparison is based solely on empathy. The show highlighted partial seizures, ‘absences’ which for me was good because these are mainly what I have. I think the general public aren’t as aware of these as they of tonic clonic seizures, partial seizures are less discussed. My parents will always tell the story of my first complex partial, we were in Toys R Us and I was about 7, I turned round to find them clapping. I remember asking them what they were clapping at me for, they told me I had been ‘dancing’ in the aisle. My utter confusion was when Mum realised something was wrong, this was shortly followed by Tonic Clonic seizures and shortly after came the diagnosis of epilepsy. We can laugh about that incident now (if you didn’t laugh you’d cry) but it scared me for a really long time.
Amy’s utter frustration was something I could identify with, her frustration when she misses things and her overall frustration at wanting to be able to do things but not being able to. I really felt her frustration as it has been something I have battled with all the time I was pregnant with Noah and even since having him. The missing things is also hard, and I always hate when Chris is looking at me and I know I am obviously meant to be answering him but I have no clue what he has just said/asked. He just reassures me that I’ve had an absence, that I’m ok and always just reminds me where I am. I always hated being supervised too, I never showered as a child when no one else was in the house, and I never ever bath even now, I think this stems from one particular seizure and from that day on I could never relax in a bath, literally every five minutes someone would shout “Faye, you ok?” It is done out of love I know, but I never did enjoy a bath after that. At 29 years of age when I shower at my parents now I still get the same. It is funny how some things just stick with you, even now I will never lock a bathroom door. There have been times in mine and Chris relationship, more so in both my pregnancy and since having Noah that Chris has sat outside the bathroom whilst I have showered just to make sure I am ok. . So watching Amys story I found it really hard, I really felt for her, so much of what she was going through I could identify in myself. I am in the fortunate position that my epilepsy has never affected my education and most of the time other than the odd wobble mine is fairly well controlled. Amys story also highlighted how big a part medication plays in the life of someone with epilepsy and what may work for one person may not work for another, and then there is the side effects and remembering to take it every day. You’d think it would be easy when you have to take it every single day, but it isn’t always. Also Amys triggers were the same as me, excitement, tiredness and stress. Imagine Christmas, holidays or even getting married being something blighted by seizures because you dared to get excited about them. However all of that said and done I am crossing my fingers and praying that Amy gets the funding she needs, gets the independence she wants and leads a life she is happy with.
Olivia: I spent the whole time watching the programme wishing she got the opportunity to learn to drive. It is something so out of reach for me and I think I have just accepted it will be for a very long time, so I was grinning when she got the green light (no pun intended). Being able to learn to drive is a big thing for young people with epilepsy who just want to be like their friends.
Thomas: Watching him have the EEG brought back so many childhood memories for me! I hated the stuff they used to keep the electrodes in place. Quick tip for anyone who has had an EEG and can’t get the gel out – conditioner, and lots of it! It will shift the gel in no time. It must be tough to have to contemplate surgery at such a young age, and I hope that if he decides to go ahead with it that it is successful.
As for Jack having 20 – 40 seizures a month I couldn’t even begin to imagine what that is like. I saw some things that his family do that mine do too. They talked about how they instinctively walked up stairs behind him, and down in front of him. My parents, sister and Chris all do this. It makes me sad, especially my sister who has done it for as long as I can remember, from such a young age. It pains me how much this has affected her life as well as mine. However how much of a ladies man was Jack! I bet Olivia isn’t his last girlfriend J
Hitting the nail on the head
There were many comments made that I think most (dont want to generalise) with epilepsy would have thought at some point, and Young Epilepsy managed to get it spot on and highlighted these emotions during the show.
Anger: Epilepsy gets in way of everything
Independence: All anyone with this condition wants is to live life independently without worrying about seizures
Confusion: Why me?
Rebellion: I cannot speak for everyone but I know a fair few people (myself included) who stopped taking their medication to prove they didn’t need it and were ok. It didn’t last long as I started feeling ill quite quickly and the dressing down I got from my sister and Chris was sufficient enough to mean I have never pulled that stunt again, in fact I am ashamed of myself for putting them through that. ( I have to point out this was a fair few years ago and not during pregnancy!)
Irritation: Epilepsy gets on my nerves.
And finally acceptance: there is nothing you can do about having epilepsy, there is no cure, you can only hope you find a dosage or combination of meds that work for you. So you have two options you wallow in self-pity (I have allowed myself that moment) or you pick yourself up and get on with life and refuse to let it beat you which is what all of the participants featured did. Young Epilepsy have to be credited for managing to get all of this across in one show.
Well done Young Epilepsy! A brilliant programme which gave some insight into life with the condition. It also hit home on the emotional element of having the condition, the heart ache, frustration and the strength of character of those featured in the show. I cannot praise them highly enough for this or thank them enough for bringing the subject to mainstream TV, for allowing the cameras to follow them. I also take my hat off to Young Epilepsy for the phenomenal work they do.
Where are they now?
Find out whether Amy got her funding here, if Thomas had surgery and what happened to Jack and Olivia here: - https://www.youtube.com/watch?v=1UhefGxxdnA
And read more about those featured in the show here – http://stpiers.education/phone/meet-our-stars.html
Silverstone Half Marathon
For a long time now Chris and I have wanted to give something back to Young Epilepsy for their support, after watching Epilepsy & Me we wanted to more than ever. Soooo on 13th March 2016 myself and Chris will be running Silverstone Half Marathon for Young Epilepsy. In my own battle with epilepsy this will be a huge step forward as I am still trying to regain control of my seizures, and anyone who knows me knows it will be two years since I broke my foot and havent run since. I know we are starting early but we wanted to fundraise on the back of the show, as Young Epilepsy are looking to build further facilities. So have a read, see our story and please please donate here:
In my last blog entry I asked for people to come forward to participate in research being run by the team at Manchester Central University Hospitals. I have now also been contacted by University of Birmingham research team asking if I could share with you all that they are looking for participants for a study Epilepsy Action have given them funding for. I am so excited by all of this and what it will lead to. It may have come too late for me and Noah, but who knows it could make a difference if Chris and I decide to have baby no.2! Those interested can take a further look here:
Also via the Epilepsy Action page: https://www.epilepsy.org.uk/research/take-part/projects-you-can-take-part-in/parenting-with-epilepsy-focus-on-mothers
Check out their twitter: @Mums_w_epilepsy
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.