You know when you used to build a tower out of playing cards and it got wobbly, you'd be trying to save it, trying to stabilise the card causing the issue - which would usually result in another wobbly card. It would never stop being wobbly, bit by bit each card would become unstable, and eventually, despite your best efforts, the whole thing came crashing down. This is what trying to deal with PTSD is like.
On the 30th April 2017 my house of cards fell down, after months and months of trying to keep it in one piece. It was a horrible horrible time for everyone close to me, but I'm so glad it happened, because I finally got help and now I'm pretty much back to my sarcastic and headstrong self again. I urge anyone living with PTSD following traumatic birth - time does not heal it, it does not get better on it's own, please get help.
I think people were shocked that I was in such a bad way. I had managed it behind closed doors for a long time. When we were in NICU we just got on with it, because that is what you do. There were very few tears, and little to no 'wallowing', because we had to be strong for our baby. We had visitors after two weeks and it must have looked from the outside that we were OK. I guess following our rollercoaster of fibroid diagnosis, multiple surgery, recovery, sepsis, expected fertility issues and a troublesome pregnancy people just thought I could cope - but everyone has their limit. It was actually just normal work stress that meant I reached mine. A new arsehole manager trying to assert his authority just sent my PTSD off the scale. Suddenly the flashbacks were frequent and unbearable, fuzzing my head and affecting my work. I would then get horrible anxiety about mis-diagnosing a patient and getting the book thrown at me, meaning I couldn't sleep, so I would just lay there while flashbacks filled my head, meaning I could then definitely not sleep. The less sleep I got, the more I got in to a tizz about work, I could not make decisions confidently anymore, and this vicious circle literally drove me mad. Even my own husband did not realise how bad things were, until he caught me on the floor of my bathroom, having a panic attack in between sobbing because I couldn't get the images of the birth out of my head, I believed E hated me, I hated myself, and it was at that point I managed to get the words out, between sobs and snot and ridiculous breathing........'I need help'.
My GP was fantastic. I was very reluctant to start on medication - but the mental health people suggested that due to my 'off the scale' scores (!) that medication would complement the therapy. I was started on citalopram. I'm not going to lie - the first week on this medication was absolutely horrendous. Headaches, nausea, inability to speak due to not being able to think of the right word, and by day 5 slurred speech and I could not feel one side of my face! I persevered, and after around two weeks the side effects had gone.
The therapy; I'm a cynic. A sarcastic, say it like it is, cynic. Years of working in A+E made me like this. I was positive that the therapy would be a waste of time. Talking over the birth with an airy fairy lovey counsellor was not going to fix me. In fact, we'd had three counselling sessions at the hospital which had been just like that. 'Tell me how you're feeling' bollocks, and then at the end of the third session she just said 'Well thanks very much and I hope you feel better soon' !!!!! But when you get so desperate you'd do anything I just accepted whatever they threw at me. In fact, this was very different.
Surprisingly, I liked my new therapist. Susan was an 'intensive therapist' that I had to travel 30 miles to see. The reason being that the 'normal therapists' in my area would not go near me due to my initial scores at assessment (yep - I was a proper nutcase!!!). The first few sessions were the 'getting to know you' sessions - where she wanted to know not only what had happened to me, but also the usual crap about my childhood etc etc. This instantly put me on the defensive - my childhood was fine - I am not a mentalist because I didn't get a Care Bear for my 7th birthday............I didn't though - and I'm still a little upset about that. As it turned out, Susan was not an airy fairy counsellor at all - she was actually a psychiatric nurse by trade!
My 'PTSD score' (seriously - the scoring and flow charts in mental health is as bad as in A+E) was 67. The score indicating treatment is needed is just 30.........so I aced that score as well. 😏 Susan suggested that we try EMDR, and I nearly kissed her.
Eye movement de-sensitisation and reprocessing therapy (is a gobfull so they call it EMDR) is a relatively new concept for those 'not in the know' but it has actually been around for a few years. Francine Shapiro first discovered that moving eyes from side to side did something to improve negative thoughts and distressing images, and published a text book in 1995 following various trials proving it worked. I had never heard of it until an acquaintance mentioned that it was a treatment for PTSD.
The consensus is that during REM sleep we process the days events in to memories. REM sleep is when your eyes are going mad under your eyelids moving left and right. It is thought that in some cases, when a person has experienced a traumatic event it does not get processed in to memory - instead it just resides in a different bit of the brain, and can be recalled in an instant - and this presents itself as a 'flashback.' Shapiro found that be recreating the REM sleep eye movement, while recalling the traumatic event, somehow caused it to get processed properly and ta daaahhhhh - you are fixed. How she discovered this completely random thing I will never know - but honestly thank goodness that she did!
It was not an easy treatment. Firstly - I couldn't do the stupid eye thing. I was too busy concentrating on looking at her finger to recall the traumatic memories - normally I'm pretty good at multi tasking but my brain just couldn't get to grips with that one. So I would close my eyes and Susan would tap my hands left and right. Secondly, it seems to take you to depths you hadn't previously been to. At first when Susan said it can be quite a traumatic experience in itself I shrugged my shoulders. At that time I was experiencing flashbacks most of the day and until around 2 or 3am when I'd finally fall asleep from sheer exhaustion, so how bad could it be? But it was bad, it was exhausting, it dealt with emotions that I hadn't dealt with, and I'd leave the session feeling like Susan had beat the shit out of me for the past hour!
I realised it must be working when at around session 6 or 7, during the treatment she asked me what I could see (she did this about every minute or so), and I replied 'nothing'. This got more and more frequent, and my scores out of 10 for how distressing the images felt to me slowly went down. I started being able to sleep again, I was able to spend time with people and listen to what they were saying, rather than just nodding but in my head all I could hear was 'knife on skin, knife on skin', or all I could see was my baby being wheeled away before I'd had chance to even say 'hello'.
In August, my PTSD score was 7.
Getting my life back after being caught up in this for two years is exhilarating. Just the other day I was laying in bed in the morning and realised that I was not thinking about anything - no flashbacks, no thoughts of how much I had failed my baby, no anxiety over what might go wrong, no nothing. It was a lovely moment. I have re-connected with friends, with my husband and family, and I have a much better relationship with my beautiful daughter - she was definitely picking up on what was going on, these little people are not stupid!
I wish more was being done to help mothers, and fathers, after traumatic birth and time in the NICU. What we seem to be doing, as NICU parents, is helping each other through it. But not everyone is as lucky as me and has a lovely group of NICU mummies to chat to. I'm aware that there are charities such as The Smallest Things and Little Miracles working hard to raise awareness - but there is still a way to go, and we need the NHS on side too.
PTSD is debilitating - but with the right help, support and therapy it doesn't have to be a life sentence anymore.