We so often teach children about stranger danger but how often do we ever touch on the fact that someone you don't know, someone you may never set eyes on again could end up having the biggest impact on your life, being your saviour at your worst moment.
I wonder four years on if you ever think of us? I can tell you now I think of you often, as I do of my work colleague, station staff and doctors from that day. I remember you on the big days like Noahs birthday, when I'm anywhere near Bow Road and you may find it surprising but on the days when nothing in particular has happened at all. The days when maybe Noah has driven me to distraction and tested every boundary I put in place. That's his name by the way, Noah. I forget you dont even know that. That lady you comforted and helped that cold grey morning in March was me. That bump turned out to be a little boy. I wasn't quite 24 weeks pregnant that morning, but now I sit here with a beautiful healthy little boy who is (in his words) “3, 4 in June.” And boy is he perfect: he is funny, smart, kind, caring, cheeky, strong willed and oh so beautiful, but I'm getting ahead of myself. That morning I felt ill, I had been nothing but sick since I fell pregnant, my epilepsy previously controlled was out of control since I fell pregnant. I remember being on them stairs and that was that. Until I felt your hand on me. Its all very hazy and the pieces of that day are put together from what others have told me. Whilst I cant remember the events clearly I do remember feelings. The feeling of relief, when despite not being able to talk still, the relief that you were there and shouting for help. The relief that someone was helping me. You may have known first aid, you might have known none at all but in that instant, it didn't matter, your presence alone was enough. My next feeling was gratefulness when my work colleague arrived, I know I pleaded with her not to leave me, and she didn't, not until I was with my husband and sister. She is someone else who will never know what her actions meant that day. Someone else I've never been able to put into words how grateful I am, maybe its embarrassment that she saw me like that that stopped me? The difference is she,through the wonders of Facebook, gets to see Noah grow and I can only hope she has half an idea of what she did that day means to us, but I digress. If I'm honest I don't remember when you actually left, it may have been when my work colleague and station staff took over or you may have stayed till the paramedics arrived. I honestly don't know, I wish I did. What I do remember is the calmness as you placed your hand on my head as you left, possibly the only moment of calm I experienced that whole day. I laid in resus that day praying,begging that I would do anything to make sure my baby was ok, I would live with every bone in my body being broken, not walking...ANYTHING that meant that bump was ok. I don't know how, I don't know why but by some miracle he and I survived to tell this tale. I wonder if you think of it? I wonder if you don't? Maybe you think what you did that day was nothing out of the ordinary? But your simple actions to us were extraordinary. You stayed, you called for help. You didn't have to but you did. That bump is off to school in September and whilst it makes my heart hurt that he is growing so quickly I am also very aware of how different it could have been. I would relive every sorry second of that day to be where I am now. You may never see this, you might but still not want to come forward (I’ll admit the media interest has overwhelmed me slightly) I may never get to look you in the eyes and say what I want to. What would I say to you? Funny isn't it, all the times I've thought of that day, all the times I've tried to think of a way to express how I feel and I still fall short, you’d think Id have some deeply profound words for everyone that day but I don't, because in reality there are no words that even come close to how I feel for every one that day. The only two words I keep coming back to is Thank You. They say it all but no where near enough. Thank you from the bottom of my heart. Thank you for all the nights Noah has kept me awake, thank you for all his tantrums, thank you for all the time he pushes the boundaries, thank you for his first steps, potty training, that infectious smile. Thank you for his laughter, the moments he throws his arms around me and tells me he loves me. Thank you for giving our family and friends their nephew/cousin/Grandson. Thank you for all the big and little moments in his life that are yet to come. Oh and Id tell you that we were fine, in fact more than fine. Everything is perfect because I get to be Noahs Mummy.
I have tried to write this so many times, in so many ways over the last few weeks, but what has ended up on the page has been a total jumble. In many ways it is a very clear reflection of my mind when it comes to Post Traumatic Stress Disorder (PTSD) and trying to process the events of my pregnancy with Noah. This blog is my experience, what has helped me and how PTSD has affected our lives, as ever I can only speak about how it has been for us, and as we discovered PTSD is very personal to each individual. Four years ago today I had a seizure and fell down tube station stairs, the events of that day have set me on a path I neither want to be on or know how to handle.So today I've decided to talk about realising that I had a problem and how I went about getting help, hoping it shows others they are not alone, others opening up to me saved me and I hope someone else takes comfort from this.
It's no secret what happened that day and it's no secret that I have struggled with it ever since, what may surprise you though is that it took until the Summer of 2018 for me to actually seek professional help. “ Faye, has anyone ever talked to you about PTSD?” I laughed, I actually laughed. PTSD? Id been pregnant, I’d had a baby with a few scary moments along the way. I haven't been to war, seen anyone killed etc. I’m ashamed of that reaction, which came 18 months after I’d had Noah, and we had been living with the after effects of the pregnancy ever since. This conversation came from a health care professional after I had finally broken and blurted everything out in an epilepsy support group after a particularly challenging day. No that wasn’t me, I was ok, I just needed time. Once Noah was a bit bigger, once he could walk, once we didn't need a buggy anymore, once I’d done a few more journeys, once I could explain to him...the list went on and on, except the once never came. I was embarrassed that I couldn't cope, that I couldn't put these things aside. Things kept spiralling after that conversation and I finally thought maybe they were right ( guess that's why they have the medical degree and not me!) I started to do my research.
Ok so maybe this could apply to me with all that happened. I started to look at the symptoms, and here I will talk you through some of what I experienced and what drove me to look for help.
Nightmares: These still plague me. I wake up screaming , sweating and crying, memories of Noah's pregnancy or sometimes they left me with just the feeling of that time.
Flashbacks: With no warning, I would see events of that day rolling through my mind, the feeling of total helplessness. It's always jumbled as are my memories of that day, but when the flashback comes they are as real as the day it happened.
Insomnia: This one is self explanatory and I have spent countless nights staring at the ceiling, not thinking anything but totally exhausted and wanting more than anything just to go to sleep.
Anxiety: A knot in my chest from the second I open my eyes, it's how I lived for the best part of Noah's first years. I also spent so much time with a feeling of dread, I was convinced Noah and Chris were going to die.
Avoidance: This was a big one for me. I live two stops from the end of the central line and I used to take the train out, to sit and wait for it turn around so I wouldn't have to manage the stairs at my local station. Bow Road, total avoidance, I wasn't going near it and you couldn't make me if you tried. Every time I left the house it was planned around avoiding any public stairs. It was ruining my life.
Hypervigilance: If ever you have had the joy of watching me watching Noah on stairs you will know how this one plays out, its like my body goes straight into flight or fight mode and protective mummy bear is being very OTT. It's one of the things I am most grateful hypnotherapy has helped. I still always ask if there are stairs/lifts if I am going somewhere new but now I will actually still go anyway.
Guilt: This is one I have only discussed with a few people. Due to the blog I have met many amazing people, and some of them have lost loved ones to epilepsy in pregnancy. I have spent a long time wondering why I was lucky enough to survive, why that wasn't our outcome? Then there is the guilt I feel for my family for having to have gone through it all with me.
My whole life was revolving around whether or not there would be lifts where I wanted to go, were there any stairs I’d need to navigate? Was it a station or place I had been to before and how did I feel about it? It was dictating my life at best and ruining it at worse, I pulled out of family parties because I was going alone with Noah and would have to have managed stairs and on the day it was just too much, the times I have had to phone my sister and say can you come and help me please I'm at such and such station. It was exhausting, I was on hyper alert all the time, anxious and convinced something horrific was about to happen.
In February 2018, with the third anniversary of the fall approaching I was finding things really tough, my sister, Alex and Chris were all pleading with me to see someone. I just felt weak, that I should be ok. However as things got worse I sent an email to the Birth Trauma Association asking them if they could help me or point me in the direction of someone who could help. Instead they turned out to be the best help I could have asked for (https://www.birthtraumaassociation.org.uk/#) They again highlighted that it sounded as if I had PTSD and to see my GP and also sign posted me to help I could access as well as a facebook support group. I finally accessed help, the support group was amazing to finally be able to lay everything out and speak freely without fear of judgement. The first course of treatment suggested by my GP was CBT but having tried it I knew it wasn’t for me, so I battled on thinking I’d have to find a way to deal with it all myself. I even had reached a place that I could rationalise it, I was in public and therefore at least there were people around to help, had I stayed off work I would have been home alone and who knows what could have happened.
Around this time I found a former colleague of mine was now trained as a hypnotherapist. I enquired with him about whether he would be able to help me, but at this stage in March 2018 it was just intrigue. However as time was going on I was starting to notice that Noah was becoming fearful when out in public of stairs and escalators and my heart was breaking knowing he was learning this behaviour from me. July 2018 changed my life, I was off to the Good HouseKeeping photo shoot with Noah and we had to go to Liverpool street station. A station I know well, I worked there. However when I got off the train with Noah I totally lost it. I sat on the platform and cried my eyes out. I couldn't face the escalator and stairs that I knew were ahead. My poor boy was so confused as to why Mummy was so upset. Some lovely man came to my rescue and I managed to say to him that I was scared of the stairs with Noah and he stayed with me, helping me until we were right outside the station, God only knows what he thought of me at that point. He will never know what his kindness meant that day although I often wish I could tell him what hat simple act meant. I got through the shoot and text Mark as soon as I was home, it was time to make a change. I didn't want to feel like this, I wanted it all to go away. I didn't want to scare my baby.
My first session with Mark was in late July and I was sceptical, I didn’t know if this could or would help but having hit rock bottom I was willing to try anything. That day Mark made Noah run up and down stairs in front of me (thanks Mark!) and talked to Chris to get a real feel for what was going on. When I say to you Mark changed and saved my life I am not joking. He always said to me, anyone who says they can cure this in one session is lying to you. However that first session gave me an inner peace that I hadn’t felt in three years. It even ended with him taking me to the local train station and walking me up and down stairs. My life changed from that moment on, I was aware of stairs and still felt a little anxiety, but with Marks help I realised that that was ok and normal. In the time after seeing him we visited Warwick Castle and I watched as Noah walked a set of stone spiral stairs (!) alone, not even a flutter in my stomach. I took him into central London to the theatre alone, something that would never had happened had I not had hypnotherapy and I finally got him on a train to Auntie Lexis, going through Liverpool Street station without a second thought. I was in a really good place and most of all my boy was smiling and any fear he may have sensed was gone. I saw Mark again in September 2018 at my request but I was still in a really good place, we discussed another appointment as March approached and I felt it would be a good idea, little did I know I would need him sooner than that.
December 2018 I felt brave enough to return to Bow Road for the first time, I felt nervous as we approached the station, I got off and sat on the platform, I texted Mark, this was a mistake, however bold and brave I felt it vanished the second I was back there. I made my way to the stairs and all I could see was me laying there, feeling the panic of Noah not moving. My mind could not process that this isn't happening now, this wasnt real, that my mind was playing god awful tricks on me, I took a photo on my phone to remind myself that this wasn't real and wasn't happening but the damage was done, the fear, the guilt, the anxiety all blew up in a single instance. I made my way out of the station and promptly burst into hysterical tears, by the time I reached Chris at my sisters I was in full melt down, I couldn't catch my breath, I couldn't talk, I was in such a state I couldn’t be around the kids. It was all too much, but once the tears had stopped I was proud of myself for managing it. This however was when problems started again for me. I started to have nightmares, flashbacks, my anxiety returned I was again adamant the second Chris and Noah were away from me that they were both going to die. After having a meltdown because Noah was at the top of the stairs at home, Chris turned back to me and said, I think it's time to see Mark again. He was right, I wasn't sleeping and when I was I was waking up with nightmares leaving me sweating. Then once more before seeing Mark I had to go through Bow Road, not even get off the train, just pass through. My sister said I held my breath, she had to remind me to breathe. I looked up as the train opposite pulled away and we were directly opposite the stairs, it was too much again and in front of the kids I broke down in tears. All I can say is my biggest nephew is awesome, that kid gives the best hugs. As ever my sister picked up the pieces and put me back on my feet, but it really was the last straw. My visit to Bow Road in December had triggered things again and it was time to help myself.
My most recent session with Mark put me on the straight and narrow again, when I spoke to him about writing this he told me I wasn't allowed to use the word disorder in PTSD as that implied there was something wrong with me and apparently Im ok :) The PTS isn't something wrong with me, its not knowing how to process things (Im sure he said it more eloquently than that though!). He left that day and I felt the lightest I had since before Christmas. I finish typing this up the day before its posted and I would be lying to you if I said it had all been plain sailing today, there is one photo taken this time four years ago that I love because it shows my beautiful bump, but that one photo always sends me into a spin. It makes me question every decision I made at that time and as I said in a speech back in November I should have taken the recovery meds, I shouldn’t have gone to work and I paid a price, and I will have to live with that guilt for the rest of my life. I was hugely triggered this afternoon and Mark bless him phoned and did a session with me over the phone. After the call I knew everything had been shifted and I was at ease again thankfully, he really is a miracle worker.
What I am saying to you all by sharing this is that it is ok to find living with epilepsy tough and it's normal for certain events to affect you. I am fast learning that I am way too hard on myself, what happened, that day and throughout my pregnancy, was traumatic and it's ok not to be ok with that. Along the way I've had people say “ but you’re both ok” yes I know that and that just plays into my guilt, but it doesn't take away the pain. I've had people say I should talk about it, that I shouldn't talk about it, its healthy or not healthy. Either way it really doesn't matter, talking or not doesn't make this worse nor does it overly help anymore, it did once though. Talking or not talking doesn’t change the fact I live with PTSD. However I know that speaking out has helped others, and what I do know is that anxiety and PTSD is a VERY VERY lonely place to be, even when you are surrounded by the best family and friends in the world. If just one person reading this realises actually what they are experiencing is normal and there is help out there then I am happy. Its for each of us to find our own path with epilepsy and mental health and as I said before it took me a long long time to admit I needed help and even longer to reach out for the help. This year I have dedicated more time than ever to looking after me and that includes my mental health, that is every bit as important as my physical health. A happy Mummy = a happy Noah and at the end of it all, that’s all that matters to me.
I am very late to write this but it has taken me a while to be brave enough to share the photos and experience, but as I always said I’d be honest - I guessed it was time to share this too. In all honesty I was embarrassed, I was embarrassed by the photos, embarrassed by how I looked and embarrassed about having to have it done at all, I felt very vulnerable and exposed.Back in September 2018 I had a home Video Telemetry to try and get to the bottom of my seizures, as it happens by the time the test had been sorted I had been on Pregabalin for a while and some sort of seizure control for the six months prior. I always said Id be honest and whilst its taken me a bit of time I thought I’d put this together to help put anyones mind at ease who is due to have one and also pass on the hints and tips for preparing a toddler for their home becoming a glorified hospital!
I can’t tell you how nervous I was about the test, and we had some serious discussions about whether to have it at home or in hospital. Due to how much Noah hates being away from me I made the choice to have the test at home, myself and Chris were not always in agreement about it but he respected my choices. Chris was concerned that I wouldn’t relax and get what we needed from the test and he shared my concern that it would be traumatic for Noah. With the choice made and the date booked I set about preparing Noah. CBeebies was a lifesaver, Dr Ranjs show “ Get Well Soon” shows a character having an EEG, so I played that constantly even in the background whilst he was playing so Noah had seen the wires and the concept of the test. (series 2, episode 5 https://www.bbc.co.uk/iplayer/episode/b09204fx/get-well-soon-hospital-series-2-5-eeg )We also read together “My Mummy has Epilepsy” from Epilepsy Action, focusing on the test part (available to download in PDF https://www.epilepsy.org.uk/info/parents-explain-epilepsy). We arranged for Noah to be cared for at home as if I wasn't there at all. Chris swapped from an early shift to a late so he could be there in the morning and take Noah to Pre-School after lunch, it was just then for someone to collect Noah, give him dinner and ride it out until bed time. One of the things that concerned me most was that it was only Noahs 3rd week of being at Pre School 5 afternoons a week, and I was worried about how he would react with all the change. His Pre-School were fantastic, I wrote his key worker about 4 sides of notes explaining everything he knows about my epilepsy, what the test involved, what we had told him and things he had been asking so that if he talked about it at school they would be able to be on the same page as us. It also had its hard moments, Noah asking me why I was broken was tough and he often asked me why I was sick. I always answer “I’m not sick but epilepsy can make me poorly”, but as to why I’m broken I had no answer. We arranged for my Mum to stay and friends to pop in and out to help out as and when. I cooked meals the week before so they only needed reheating and sorted Noahs clothes for the week and PE kit etc.
We made the decision that I would go to the hospital alone, that my Mum would get to mine and Noah would go to school as normal. A few things we did to break Noah in gently:
I sent photos of the wires attached to my head from the hospital, Chris showed them to him and he thankfully he laughed,
I brought home wires for him to play with and experiment, poor Baby Jake by the end of it, but Dr. Noah was happy.
When Noah walked in from Pre-school we didn’t bombarded him with questions. Thankfully he was totally intrigued by it all.
We had decided that I would be set up in the living room, allowing me to be with Noah for as much of the day as possible. I had the added bonus that the wire moved further than I anticipated and as our downstairs is fairly open plan it gave me a lot of freedom.
A big tip is TAKE THE HELP! The Levines were huge helps, Luke doing my housework and running about with Noah when he got home from Pre School, Stuart did the school run every single day, I would have been lost without them. We also had people very generously cook dinners for us that we just had to pop in the oven and reheat. The hospital advised us to send pets to another home, but as there was already so much upheaval we kept Patch at home for Noah. I knew once Patch had seen the equipment he would leave it alone and I was right.
We never hid anything from Noah and we were so so lucky that the man from the hospital was so fantastic with him when he came in to take the recordings, explained anything he wanted to know and even played with his Thomas toys with him. What I learnt is my 3 year old takes in far more than I realise! We did the full week and on the final day they removed the equipment, where I had a much needed shower and rushed to pick Noah up from pre school where I told him we could do anything he wanted… So we went to the park and took Patch for a walk.
Conditioner becomes your best friend
My top tips!
Prepare your child, books, tv shows and talk to them about it all.
Get your hands on some wires for the child to play with, let them get use to the equipment, seems less scary.
Take as much help as you can! Prepare child care as if you aren’t home.
Wear a button up shirt, getting a t shirt over your head is hard work with the wires!
Keep things as normal as possible in your childs routine.
Conditioner conditioner conditioner once the test is over! It was the best shower of my life :) But it took at least four lots of conditioner to clear the glue out of my hair.
I was so apprehensive about having the test at home but in all honesty it was the best thing, Noah was totally unphased by it all and loved talking to the staff from the hospital. Children are resilient and I 100% worried more than he did. In terms of childcare it was easier being at home and I would say to anyone with children that if you have the option to have the telemetry at home than do so. Unfortunately for me it didn't show anything we didn't already know, but for many others it could be the break through that they need. Contact me: Twitter/Instagram: @fairyfaye1986 Email: email@example.com Facebookpage: https://www.facebook.com/fairyfaye1986/?ref=aymt_homepage_panel Facebook support group: https://www.facebook.com/groups/739520702798749/
SUDEP (Sudden Unexpected Death in Epilepsy) is one of them things, no one wants to think about it, no one wants to believe it happens and nobody believes it will happen to someone they love, that is why this years campaign from SUDEP Action is so very important.
Awareness isn't enough its time to ACT!
I struggle every year with what to write, so much so its Tuesday morning and I’m still working on this. I always want to do the topic justice, I always want to make sure I get the message across clearly. There is no pretty way to write about SUDEP and this isn’t about scare mongering, it’s making sure as many people as possible have heard of SUDEP, they know the risks and know how to try and manage those risks. Its about saving lives.
I always want to do my part of SUDEP Action, and for SUDEP Action Day as I think it is a vitally important message that needs to be delivered. One family I spoke to in the run up to today told me their daughter had only ever had three seizures in her lifetime yet she sadly passed away from SUDEP. It got me thinking about my own epilepsy journey and where my own knowledge of SUDEP fitted within that.
I was diagnosed with epilepsy at the age of 7, I was 25 years old before I had first heard of SUDEP, I was 28 years old, expecting my first child having lived with epilepsy for 21 years before a medical professional ever uttered the word SUDEP to me. HOW is that happening? If I, someone who has lived with epilepsy all this time didn’t know about SUDEP until I was in my mid 20s, how are we supposed to get the message out to the world? As I said above, I was 25 the first time I heard of SUDEP; it was via a facebook epilepsy support group back in early 2012, before that I had never heard the term. I guess much the same as some people I thought my seizures were not as bad as others and it wasn’t something I should think about, I mean no doctor had ever mentioned it to me so why should I have been worried? Having lived with epilepsy for 18 years before I had heard of SUDEP, was I naive to believe that my epilepsy couldn’t kill me? I clearly was and I worry that there are many others who are in the position I was.
Fast forward to 2015, I was 28 and pregnant with Noah and the word SUDEP was first uttered to me by a doctor. Now it wasn’t just my life it was my babies life too. I’m slightly ashamed to say that in the years in between first hearing the word and then it being mentioned to me by a doctor that although I read up a little I still lived in a naive, perhaps ignorant, bubble. However in the three years since Noah was born I have spoken to lots of families as well as SUDEP Action and done my research and I know that awareness isn’t enough, it is time to ACT. Its time to look after ourselves and look out for each other, so if you do one thing today share the message of SUDEP Action Day 2018.
So what can you do? ACT!
What are the risks?
If you are and adult and have epilepsy, your risk is 1 in 1000.
If you are a child with epilepsy, your risk is 1 in 4500.
If you have 3 or more generalised tonic-clonic seizures in a year, you have an increased risk, particularly if they happen during sleep
If you are being considered for epilepsy surgery, you are considered to be at increased risk
If you have a drug or alcohol problem, your risk is higher than someone who doesn’t have these problems
If you have had a recent epilepsy-related injury or are being treated for depression, you are at increased risk
If you have absence or myoclonic seizures, you are not known to be at increased risk
If you have very few seizures, you are at a lower risk, but still at risk
How can I reduce my risks? Taking your medication regularly and reliably. Speak to your doctor before making any changes to your medication. Discuss any lifestyle changes such as having a baby or going to university with your doctor. Avoid excess alcohol consumption and using recreational drugs Make sure you have regular reviews. Tell your doctor if your seizures have changed. Not everyone with epilepsy is at risk, it is important you discuss your risk with your health professionals. If your medication isn’t working, don’t settle for continued seizures. Ask your doctor what other options there might be. The risk of SUDEP varies from person to person.
Why dont more people know about SUDEP? Act today and share some information about SUDEP, your one post could make all the difference.
Share your experiences….
Share stories of how you manage your epilepsy, hopefully inspiring others and offering them a coping mechanism they may not have thought of before. Is sport the answer for you? Regular sleep?
To your doctors, to your friends, to your family. Explain the risks to those around you and ask your doctors what alternative there is if your seizures are not controlled.
Share social media posts, Retweet information. Have regular reviews with your medical teams.
Knowledge saves lives.
There are over 1000 deaths a year because of epilepsy and over half of these are related to SUDEP, that number is also likely to be underestimated due to not all deaths being recorded as such. 52% of those with epilepsy are seizure free and it is believed 70% could be with the right medication, controlled seizures reduce your risk, so act now and speak to your medical teams, ask what else could be done. Look after yourself, listen to your body and today share the message.
I have spoke about myself being naive and living in a bubble believing it wouldn’t happen to me or somebody that I know, it has also been, for me, the saddest part of the stories of SUDEP I have heard, families having NO idea that epilepsy could kill. So ACT today, knowledge is power and you may just help save a life
SUDEP is a silent killer, it’s time to make a noise about it.
Sunday saw me take on Royal Parks Half Marathon for the second time. I would love to say my come back at Royal Parks was a fairytale sunny day, it couldn’t have been further from the truth; the skies opened and torrential rain was the order for the day for my final ever distance run and I now have a chest infection for my efforts!
I arrived at 08:15 to meet up with Young Epilepsy and no sooner had I stepped off the tube the heavens opened. Despite this everyone was in really good spirits and those of us there huddled together for a photo. I then spent a bit of time catching up with those I already knew and meeting those I didn’t. Ed was also running for YE again this year and he had his own issues last year having to withdraw from the race due to injury, we both had scores to settle. I was sorting myself out and was getting more and more nervous, talking away to Linda I suddenly burst into tears (sorry Linda!). Linda is amazing, she comforted me at 8 miles last year and wiped away the tears when I finished and was all over the place, just so happens she got the tears beforehand this year. Her words rung in my ears all round the 13.1 miles. By coincidence Becky arrived with her boys and said the exact same words to me. “ If you get out there and you need us, call, we will come and get you wherever you are!” THAT to me is what the YE family is all about, knowing that when the chips are down they will come running and they will celebrate every high too! Vic arrived with her boys and brother, and I was so excited to see them, life been hectic and it's been a while. Vic has been battling her own epilepsy whilst also fundraising and raising awareness on an epic scale for YE as her son also has epilepsy. I knew how nervous Vic was about the day, I know she was emotional on the course but she nailed it and I couldn’t be prouder of her. That lady is made of tough stuff and I knew this was something she had to do, and whilst she may have doubted herself we never did. Becky and Vic are two of the best things to have come from YE for me, these ladies are my family, their support at all times is second to none and their affection for ‘Dave’ and Noah warms my heart and they are both raising beautiful boys who are a credit to them.
The race started off much the same as last year, myself and Luke played cat and mouse for a few miles before separating. Luke is such a rock to me and I know he knew how nervous I was about today and he did his best to reassure me. I felt fine, then I came up to Buckingham Palace and I had a little freak, it was my last vivid memory of last year, I took several very deep breaths and plowed on. The first 6 miles flew by and I saw Stuart at 10K who lectured me to carry on when I stopped to talk :) As I pulled away from him I realised I was really really enjoying myself, the weather was rubbish but I was having a ball. 8 Miles the wonderful YE team were waiting, a big cuddle from Becky and Linda who is like my Guardian angel, checking me over, asking if I needed anything and how I was feeling. I remember my only concern at this point was my nose was running and I needed tissue! I left them happy with my tissue to hand but at 9 miles (ish) the sky opened! AT one point I couldn’t see, I was wiping water off me and mainly I was just really laughing. I was loving it. This is where the charities out there and the Royal Parks Volunteers came into their own, the atmosphere was incredible.
I crossed the finish line in 3:01:18, I had set myself a target of sub 3. If I’m honest I could have made it in in under 3 but I said to Chris I just could not be bothered, I was enjoying myself and wasn’t worried about some target I’d made up in my head. I finished very very happy. The first person I saw when I crossed the line was Becky and she gave me a huge cuddle and updated me on Vic. I made my way back to YE and it was amazing to walk back and give them all the biggest cuddles. Seeing Linda was a really lovely moment for me she had been so so supportive. James, as ever, was full of cuddles and praise knowing how hard I had found going in to today, Stuart was there telling me how proud he was of me. Luke followed over the finish line shortly after and Vic just after that. I have never felt such a burst of pride at seeing someone. One of my first questions to James was how did Ed do and Mr Speedy pant had smashed it with a PB of 1:24 (correct me if I’m wrong!) and James said he had also asked after me when he had finished which I was touched by, we had both settled the score. Everyone was freezing so it was drinks and food and heading home.
For me I knew today was my last long distance run. I had made the decision after my 100KM trek in May. In my very tired emotional state I had told my trek partner that I do it all because I feel like I have something to prove, that I’m not the sick one, that I am more than capable, that I’m not known as ‘Faye the one with epilepsy’. We were sat resting at about 92KM and he said to me “ Faye you have just walked further than most people ever will, you have completed five marathons you have nothing to prove to anyone, you can stop now!” That moment hit home for me and I will be forever grateful for that. It was the moment I knew I had nothing to prove to anyone else, especially myself. I never will be a fast runner, for me it was always about endurance and for me the charities I have helped along the way Epilepsy Action, Diabetes UK, British Heart Foundation and Young Epilepsy have been my inspiration. Running for my family, for people I love and then the Epilepsy family has been every bit of inspiration I have ever needed. I always wanted someone to say to me “ because of you I did not give up”, because if I can anyone can, and I mean that. For me, Noah knowing I run has been one of my proudest moments, he talks with pride of Mummy and her running and her medals. I hope that he takes from this that you can do anything if you put your mind to it, and my marathon highlight was London 2017 when I ran for ‘my 26.2 for Young Epilepsy’, the day I found my strength again. It's been an emotional journey and one I will forever be grateful for and proud of.
It’s taken me a few days to write this due to the chest infection but I wanted to get it out here to say thank you to each and every person who has sponsored me. I wanted to write this to highlight what an amazing support network YE are. “ Wherever you are if you need us…. We will come to you.”
Twitter/Instagram: @fairyfaye1986 Email: firstname.lastname@example.org Facebookpage: https://www.facebook.com/fairyfaye1986/?ref=aymt_homepage_panel Facebook support group: https://www.facebook.com/groups/739520702798749/
I wasn’t going to bother writing this post as Chris had covered part of the appointment and had covered it so well, but I’ve decided to as I almost see the blog as a diary and I want to be consistent and make sure I cover everything.
Monday 8th January saw my first appointment with my consultant in what felt like forever. I had a lot of questions for him, we had been talking about having a second baby but it was still something so far from being a reality but I felt we needed to address it. Also at the point of the appointment I had been 13 weeks completely seizure free, I was bouncing off the walls and ideally wanted to decrease my meds back to what I was taking before Noah.
I started by telling him how well I had been feeling and he knocked the wind of out my sails ‘ the meds aren’t working Faye, this is a lucky streak, I am confident the seizures will return.’ OH. That was not what I was expecting and I remember thinking oh what does he know (I apologise in advance, as he was totally right!) We had a lengthy discussion about better control of seizures from the point of view of my health rather than minimising any pregnancy risk. It was decided, in both respects, continuing on a high dose of lamotrigine was not in my best interests and anyway given I had significant loss of control of seizures whilst pregnant it was unlikely to give me good control, and it is giving me poor control at present anyway.
We had a discussion about which new medication to introduce, purely based on what would be best for me, it was decided to introduce Pregabalin which has the added bonus of being used to treat anxiety. It was decided to introduce it slowly over a 16 week period and luckily for me he agreed not to do anything with lamotrigine until after my two marathons and 100KM trek. The last thing I wanted was to start being really ill before them and it mess my training up. The running was making me really feel like me again and I am clinging onto that.
However two weeks later I had seizure whilst home alone with Noah, I am just thankful that we have such amazing friends who will drop everything to come to mine and Noahs aid. I should of known it was coming I had been feeling a bit funny for a few days, but guess I just got complacent, which is never a good move.
I have been on my new med now for almost 8 weeks, with fortnightly increases, and it *seems* to be going well. I have had a few side effects, headaches and exhaustion - I’m back to napping most days, which isn't great when Noah has dropped his nap!
On the whole life is good and I know I am very fortunate. The blip I had seems to have calmed down and business as usual has resumed.