I love social media I really do, I love how Facebook allows me to keep in contact with friends I made travelling, with family I don’t see very often and for giving me support on the darker days with epilepsy. Instagram is a great favourite of mine – I love a photo. I love Twitter especially for the running community (#ukrunchat / @ukrunchat) and most importantly social media lead me to Alex and I will be forever grateful for that! I also think Timehop and the ‘On this Day’ are really good features; memories of my uni days, travelling photos, weddings, births, random funny days I had all but forgotten…however they occasionally throw up stuff you would rather forget. For me it was a photo taken this time last year. I have thought really hard about this and sharing it because to be honest I just wanted to close the app and never look at it again.
It cropped up and I felt like I had been punched. I have sat and shed tears at this photo because I don’t recognise me! I suppose it has been a therapy, I cried tears for everything that happened and I have also shed happy tears because I know my baby boy is safely asleep upstairs. So why am I sharing this photo now, when I’d rather forget it and bury it somewhere? Because 6th March last year was one of the worst day of my life – 6th March 2016: my first Mothers Day!
I always said I’d be honest and here it is – the picture shows how different life is. I have a baby boy who I cherish who is my whole world and reason for breathing. I allowed epilepsy to drag me down at times but I never ever let it win and now more than ever I have every reason to stay on top. I’m not stupid enough to think that epilepsy won’t have its moments that it will pull me down, and I will struggle with the lack of control BUT I have every reason to battle it now more than ever. I love my baby boy and I love my husband more than I love myself and I will do everything I can to ensure that this damn condition doesn’t rule our lives.
The photo in question was taken the day I was discharged from hospital following my seizure and fall down the stairs at the tube station last year at five months pregnant (Read about it here: http://fairyfaye1986.weebly.com/blog/blog-12-and-then-it-happened ). I look at that girl and I don’t recognise myself, a pale, drawn, bewildered person who to be quite honest looked like a ghost. Even now it hurts me to look at it, a lot of this year has been a blur but I do remember the relief to be home in bed, with my family, having a cuddle with our pup and our baby safe in spite of everything. I remember the fear and anxiety, feeling totally helpless as I was dragged along on a ride by epilepsy that I did not want to be on. I sunk lower than I ever thought possible at that point last year and in the weeks that followed and it has taken me a long long time to recover from that, it’s still ongoing, and it is only sat here now that I can say that.
I have heard that quite a few times over this last year (mostly in a positive sense) I keep being told that I am not as much of a stress head as I was. I will openly say this is true (most of the time!). I am still a control freak, I hate change but mostly if Noah is happy and healthy I don’t care about the other stuff. I think I learned to be ‘selfish’ but realised that actually looking after yourself and putting yourself first isn’t selfish at all.
But it is not just me who changed it’s the people around me too and my relationship with them. I don’t think Chris will mind me saying that it has been a testing year, and anyone who loves someone with a condition will sympathise with how tough it is for him and a relationship, it pushed us to our limits. We are lucky enough to say we have come out of this year stronger for it, and most importantly as a family.
It has only been in the last month or so that I have talked with those closest to me about how it was for them. Me and Alex can now thankfully laugh about one of the few times I ventured out and we were front row at the theatre and I turned to her saying “I don’t feel great” or the untold times she has spent waiting whilst I had my head over the toilet, or the trip to Paris (I was only 10 weeks pregnant) where I spent 70% of the time in the hotel asleep! We came out of my pregnancy bonded for life!
Steph told me recently about when she saw Chris name on the phone that morning that she knew instantly that something awful had happened. Her fear at seeing me being taken out of the ambulance and taken off on a spinal board to resus, she talked of how it broke her heart seeing how upset Chris was as I was in resus being treated. Then little over a month later when she was the one there checking me over after the second tonic clonic, desperately wanting the baby to kick and finally the Niagara Falls of tears when she saw Noah arrive safely. My nephew who adores his baby cousin and was so excited when I first told him I was having a baby now looks horrified if I mention having another baby “No Bor-Bor I don’t like you being in hospital, I don’t like you being sick” and that breaks my heart, he was just 5 when he first said that.
I have a whole new love and appreciation for the people closest to me and seeing the roles they take in Noah’s life. The most obvious Chris now being Daddy. He is amazing and Noah worships the ground he walks on. My sister who became Auntie Dave (don’t ask!), I remember just before I had Noah I said to her when you see baby and hold them you will understand how much I love Freddie and Maisie. I never believed I could love my sister more than I did but seeing her love my son unconditionally just makes me want to burst with a sibling pride. Holly and Alex who have loved me at my very worst have become Auntie Holly and Auntie Alex, Noah’s little face lights up when he sees them. He doesn’t sit still for anyone but I will quite often turn around to find him snuggled up on Alex very content! And my own parents, having a child makes you appreciate your own all the more.
The ‘Invisible’ Condition
People say to me “Oh you are ok now, look at what you do with Noah.” It is not that simple. Some days a combination of epilepsy and/or anxiety will leave me crippled not wanting to leave the house but I drag myself because I never want him to miss out. And to those who think I am out and about or things aren’t that bad. Look at the photos or what I am doing or who I am with; how many of them times am I without Steph Alex or Chris? So yes on the surface I am having a whale of a time and I love my life and my time with Noah but look a little closer and you will see the effects this last year had and I bloody hate it. I have been told that I should just be grateful I have Noah. And you know what? I am, I count my blessings every single day I know I am the luckiest person in the world because I get to call him my son but that does not mean that I am not allowed to find things hard.
Whenever I leave the house there is always someone who knows where I am going and the exact route I am off on ‘just in case’. That’s a phrase we use a lot in our house… “I am leaving the bathroom door open ‘just in case’, “I am only running laps around the block ‘just in case’. Whilst we won’t let epilepsy dictate our lives we have to be realistic and acknowledge it, so we just have to plan and be sensible.
I battle things that seem so simple and I get so angry with myself – tube station stairs? I may be ok on my own – if I have Noah a full on melt down follows. I add a good 20 minutes to my journey every time I head out to get the tube to avoid having to take him on stairs. I still haven’t been back to the station where the seizure happened and to be honest it makes me feel sick to even think of it.
My first Mother’s Day has been spent with my parents, Chris and Noah. We went out for a light lunch and a look around the shops, Mum bathed Noah with me, he went to bed and then I cooked dinner. We had a really lovely day.
In the run up to mother’s day the epilepsy has not been that great – I have been tired and things have been a bit stressful and Noah has barely slept the last few nights, and as ever we know sleep deprivation is a huge issue but I do keep reminding myself that today’s bad day would have been last year’s amazing day! I am running Silverstone Half Marathon next weekend and trying hard to focus on that and just getting around it! A year ago getting to the end of the street was an achievement so knowing that I am even heading for the start line gives me a huge buzz.
I wish I was being dramatic when I sit here and say that I really thought it was going to kill me, sat here now I do feel a bit dramatic saying it but there have been points in the last year I honestly thought it might. This time last year I think I was the most fearful of the epilepsy I have ever been. That hasn’t changed over the year, and what’s made it hard is that the goal posts have moved constantly and they keep doing so! As we speak I am back on the dose of meds I was on prior to pregnancy but in my honest opinion they aren’t doing the trick. However how much can I ‘up’ them before the rotten side effects come back. A phone call to the epilepsy nurse is in the pipe line.
All of that said my now is Noah and however rubbish I felt or feel I look at him and know that he is worth it all and then some. Of course if I could have avoided everything that happened I would have, I never want to place him in danger, but I would do it all again if it meant I end up where I am now. I could go on for pages about Noah. He is such a little character, I call him an old man because I honestly think he has been here before. He is Chris double to look at and I swear nothing like me! Although Chris says he has my curious (insert nosey!) nature, he is fascinated by everything around him and he has my impatience, if he wants something he wants it yesterday! I honestly cannot believe he is almost 9 months old, I am sure I have blinked and the time has flown by, but it has been the most amazing 9 months and I look forward to watching him grow and finding out who he will become.
The fact Mother’s Day coincided with this date has made it an emotional one and I never expected that. I kept welling up and crying tears of relief and sheer joy. I look at Noah and I cannot believe how lucky I am. I have really been reflecting on the last year and how far I have come and I cannot believe it. A year ago I would never have believed you if you said I would be sat here now a half marathon ahead of me and some control of the epilepsy. I know I still have a long way to go, that we are far from where we were and where I want to be, and no doubt there will be bumps in the road, but its baby steps and as long as we take one day at a time we are winning. I may lose a few battles but I refuse to lose the war. My next blog post will come the day after my 30th birthday (ekh!) as I am once again taking part in the Epilepsy Blog Relay. We have a busy two weeks ahead with birthday celebrations but Im excited :-)
Silverstone Half Marathon
As I have mentioned a few times on Sunday 13th March I am running (I use that word loosely!) Silverstone Half Marathon in my quest to raise £366 (a pound a day for the year) for Young Epilepsy! Anyone who knows me knows prior to falling pregnant with Noah I damaged my foot badly during the London Marathon 2014 and I haven’t run a long distance race since. Silverstone marks 23 months to the day since VLM14 and I am the most scared I have ever been for a run. I am battling the fact I am no-where near as fit as I was, the injury (which is still on the mend) and hoping the epilepsy behaves nicely for me! It is also a huge test for my massively dented confidence.
So please spare what you can for this amazing charity, have a read and sponsor here:
My names Faye, mostly known for being a tea addict, swimmer and a swim instructor. I'm almost 34, 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.