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.
What is PTSD?
“Post-traumatic stress disorder (PTSD) is an anxiety disorder caused by very stressful, frightening or distressing events. “ (https://www.nhs.uk/conditions/post-traumatic-stress-disorder-ptsd/ )
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.
Facebook support group: https://www.facebook.com/groups/739520702798749/
My names Faye, mostly known for being a tea addict and keen runner and swimmer. I'm 32, 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.