House of cards

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.

What lies beneath

'No one knows what lies beneath!!!'

This was my friend's status on social media last week. A cry for help, or to simply let us know she was struggling. She's so right. Shit happens, we all get on with living, and everyone thinks we are ok. We don a brace face, a fake smile and we carry on. Even when we are dying inside. When realising I'm struggling this week a colleague said to me she would never have known - I seemed to be doing so well (!)

It made me think of this photo:

Everyone absolutely loved this photo and I really didn't know why. Comments such as 'you look so serene' - nope. 'The relief on your face' - nope. 'That right there is love' -  wrong again. That look on my face was a silent sob - just caught at the perfect time that it looked like a smile. This was our first cuddle and after about two minutes I tried to hand her back. The NICU sister, lovely Therese, said I needed to have her skin to skin for half an hour. She smiled at me, and I knew she knew, she knew how terrified I was, but she left me like that for the longest 30 minutes of my life. What was actually happening was this:

Guilt - this day and every day since. Guilt that because of my body's failure E was now here, tiny, tubes and cannulas sticking out of her, and fighting to survive. 'You have nothing to feel guilty about.' 'You saved her life,' say well meaning friends and family. It falls on deaf ears I'm afraid. It always has and it still does.

Fear - fear that one of those tubes would come out while I was holding her. Fear that that fragile, translucent, barely developed skin would break from my touch. Fear that she would stop breathing - so listening for every beep and alarm from her monitoring. Also fear that I would hurt her (more than I already had) just by touching her - her skin so sensitive as it shouldn't have been touched for another 11 weeks, we were warned to resist stroking her skin as it could hurt her (or so they thought - no one really knows for sure), so then you just become terrified to even touch your tiny baby, and holding them is a huge deal.

Mourning - I have mourned my pregnancy every day since it ended so abruptly. I have mourned my final trimester - 11 more beautiful weeks of feeling her wiggle inside me. 11 more weeks of showing off my bump, and moaning that I couldn't get comfortable at night, and 'eating for two.' And when you hold a premature baby, their limbs jerk around just like that feeling inside you, but it's outside. Still now I will cross the street rather than have to look at a pregnant woman.

Numbness - when you are warned that the first 24 hours of your baby's life is the 'honeymoon period' and following which - she may or may not survive, you adopt a distanced numb being. And the reason for this is not because you are some hard faced bitch that cannot love your child. It's to protect yourself. You can't get too close because you know in those early days every minute is a blessing, but everything can change in the beep of a monitor. You see it happen to other people, and you pray that the next time it happens, it is not to you, and then you feel guilty for feeling like that. So you hold back, and wait until things are a little more stable. You walk around and people say 'here comes mummy' and you feel nothing. You receive  card after card with 'congratulations!!' on the front and you have absolutely no idea why. When you finally let go and dare to fall in love, it then breaks your heart every day you have to leave the hospital and go home empty handed.

So as you can see - with all of those feelings there was no room for 'relief,' 'serenity,' and 'love.' So when I'm mulling everything over (again and again and again) I'm angry that when I look at that first photo of me and my amazing baby girl - that those are the feelings I'm reminded of. I didn't ever respond to those comments - because I felt guilty that I felt none of those feelings that people were so excited about. Fast forward a few weeks though and there was this photo:

This was the one that said all of those things.

Why am I talking about all of this now? Because this is the reality of dealing with prematurity. And because I so often see those 'first hold photos', the beaming parents among the tubes and monitors, and I know that those smiles are fake. But none of us dare say how we are really feeling. Until now.

This week is maternal mental health week and this is the week my mental health turn a huge spiral downhill (my timing for a breakdown is impeccable!!!)  We've recently been bombarded in the media with 'heads together' and 'it's ok not to be ok' - which is all very well - yet we fail talk about WHY we are not ok. WHAT is going on in our minds and why we feel the way we do (sometimes we don't even know why - and that is ok too). 40% of mothers of premature babies will suffer with mental health problems compared with 5% of  mothers that carry to term. And what about the fathers? So frequently forgotten - yet I know they suffer too - not only worrying about their child but also their partner. 

So here is what is going on for me right now. For 21 months I have tried to work through my mental health problems myself, truly believing that I would come through the other side with a bit of positive thinking, blogging and some St. John's Wort! Oh dear how wrong I was. Possibly not helped by a few other life stresses thrown in. And suddenly, like a cork popping out of a bottle of fizz, I couldn't contain my 'fizz' anymore. 

Flashbacks of the birth have got so all consuming they take up most of my day, and night.   This results in insomnia, terrible anxiety which cause irrational thought processes, an inability to make decisions, panic attacks, and rubbish feelings of failure and worthlessness. I can rationalise it all like this because I can be 'the healthcare professional' looking in at me as a patient! But that's where it ends really as I have no idea how to treat it! So now, a long 21 months down the line I have asked for help. I achieved some pretty impressive scores in the questionnaire from the mental health team (always aspiring to score highly in everything I do!!!) and I'm waiting for treatment to begin. I'm extremely fortunate to be having a relatively new therapy for PTSD called EMDR - eye movement de-senstising and reprocessing therapy. It's like a brain reprogramming thing - almost like a mix of cognitive behavioural therapy (CBT) and hypnosis. I'm so hopeful that it gets the results I need.

So why am I sharing this? Certainly not for attention, or pity. Those who know me will know I couldn't think of anything worse. I'm sharing it because I think it's important that we speak out. My friends and those closest to me would never have believed that me - former focussed, sarcastic, conscientious, hard working, life loving  positive thinking control freak could be reduced to this anxious, nervous, traumatised, panic stricken being..........and that's my point.

Mental health does not discriminate. It happens to everyone regardless of gender, colour, sexual preference and social class. It's happening to your friends, your neighbour, your family, your work colleagues. It happens when you keep telling yourself you should be grateful for what you have (thus increasing guilt further). But not everyone admits it or speaks freely about it. And because of that it is still a taboo. Let's speak to each other about these things, and instead of well meaning yet ill thought advice just listen and offer help. Even if it's just company for a walk or a glass of wine! Because there really is no advice to be given for these inner demons - let's leave that one to the professionals. And I will be ok - I know I will xxx

#headstogether #itsoknottobeok #smallestthings #bliss #maternalmentalhealth

You had one job.......

You had one job. I'm sure that most mothers of premature babies have thought these exact words at sometime during the beginning of the journey. You had one job. Grow, nurture and keep your baby safe for 40 weeks. One job. And you fucked it. It eats you up, those four words. They go over and over and over in your exhausted and exasperated mind. You had one job.

This has been another area in which I have really struggled to be understood by anyone other than a fellow premmie mummy. This self loathing. I still suffer badly with it now, yet I know to keep quiet about it - because people don't understand and can't understand, and there is very little that can be said to help. I'm told over and over that I saved her life, if it wasn't for me that she would not be here, if I hadn't acted so quickly that things would be very different. This is met with - yes but if my body did not fail her then we wouldn't have been in the situation in the first place!

Confidence has never been my strong point since I was a child. No idea why, had a perfect childhood with a lush family. I've spent my entire adult life working extremely hard and setting myself ridiculous targets and aims for some kind of competition I've had with my unconfident self! Bizarre behaviour! And now what little confidence I'd built up has been beaten out of me with a stick. 

How do you deal with it? I literally have no real idea but I started by trying to overcome my 'anger'. This was the suggestion from the hospital counsellor in early days;

'What are you doing about your anger' 

What anger? We hadn't even spoken about anger. I'm not angry???!!!! Yes following that simple question I realised exactly how angry I was. And at everyone and everything. At everyone for not understanding. At myself for failing my baby. At my husband for having more time with her in NICU as I was forever fucking pumping. At every single pregnant woman I saw. At every friend who had an uncomplicated pregnancy and full term brith. And at my cat, for deciding to become diabetic the week we brought E home! 

I dealt with the anger by running it out and punching my sofa cushions, and it really does work. I've never been able to do the last thing though - but maybe someone reading this will. She told me to write down everything I was angry about (I mean really is there enough paper?!), tie it to a rock, and throw it in the river - once done you have to let it all go. I just can't do that yet, it's far too final, maybe one day I will have the strength to, it's still early days after all. 

Flashbacks - they are a trigger for the self loathe - as they start, and everything runs through my brain again, and it finishes with - you had one job. The flashbacks are impossible to control, although thinking about it they haven't been so frequent recently, so maybe that is progress! 

The self loathe puts enormous strain on relationships. My closest friends just want to punch me I'm sure! My husband gets so frustrated at me. I'm really not doing it on purpose! There is absolutely no control. I am literally a shadow of my former self and I spend many an hour wondering if that self will ever return, or if I'll spend the rest of my life thinking myself in to oblivion. 

And really, I've been doing another job pretty well for the past year or so. My baby girl is thriving, in to everything, scaringly intelligent, and not letting anything get in her way. So I've not done a bad job at that I guess! I should maybe take a leaf out of her book. 

But for now - all I know is, I had one job. And I fucked it. And that will continue to haunt me I think for many years to come.