Motherhood - not for sissies

Motherhood - not for sissies

Monday, 8 August 2016

PTSD - that's that army thing right?

PTSD. It's exhausting. And it's not something I planned for. Although I don't think anyone plans for mental health issues. 

I knew about post natal depression (PND) and I was ready for it. Having had a few mild depressive episodes over the years I thought I was probably at risk of it. But having always had a few failsafe coping mechanisms I felt confident that should I be one of the 15% who develop it, I would recognise it, implement my strategies and get help if I needed. What I didn't count on was something very different. Something that I associated with soldiers following conflict and war. Post traumatic stress disorder (PTSD) is not something that I thought I would be adding to my (ever expanding) past medical history list. Although saying that - nor was extensive endometriosis, 25 fibroids and crash c-section. In the words of the mighty Frank - that's life.

In the days and first few weeks following E's birth both the husband and I had totally expected reactions to what had happened. I similarised it to the grief cycle at the time - denial, anger, bargaining, depression and acceptance. I really felt like I went through all of those stages quite quickly, and I remember saying to one of the nurses on day 5 that I had reached acceptance! How wrong I was. But at the time I did feel like that. I'd had a week of recurring dreams of the baby not moving, waking up screaming. I went through all of the emotions listed above. And by day 5 I felt ready to settle in to our new 'life'. Our NICU life. And after that I just got on with it. Of course there were still times of tears, of disbelief and of fully loaded anger, but most days were spent trying to be new parents in our alien world. 

My main difficulty initially was guilt, and as I understand I am not alone in those feelings. Once talking to other premmie mummies its the biggest, nastiest, all-consuming emotion. And it is probably the one that is the most mis-understood by everyone else. The other was grief. Grief for my lost pregnancy and the feeling that I had literally been robbed. These often go hand in hand.

A lucid memory I have of these emotions was a few days in. We had moved from ITU to HDU but it was still early days. When walking out of the room the nurse said to me;

'Why do you always walk around holding your tummy? Are you in pain?'
I looked down - not even realising I was doing it.
'I miss my bump,' I replied.
'But why? look at her? You have a beautiful baby girl.'
I looked back at E in her incubator. Tiny, looking like a mix between a rat and a foetus. I still didn't know who she was. I looked back down at where my bump should be and felt overwhelming grief, and then guilt. Ashamed at my body for not being able to carry her, for literally trying to kill her. Just awful. And those feelings do not go away or get easier. It's harder perhaps, now I love her so so much, to accept that I could not give her what she needed when she needed it the most, that instead of being cosied up inside of me she spent her first few weeks in a plastic box, being blasted with humidity, heat and oxygen. The guilt of course continues, most recently relating to development. Premature babies usually take a little longer to reach milestones. One reason for this (among many many others - of course they are all different) is that their limbs tend to be more extended. This is due to the fact that they should have been in a flexed position for many weeks more than they were - 11 weeks in Emma's case. Yet another failing of my body - contributing to her development. 

No amount of counselling can help I don't think. It does not matter how many people tell me that I actually saved her life, that I have nothing to feel guilty about, that I am incredibly lucky to have a beautiful healthy girl (I know that!). It will just take time. Like grief, it will just take time. The counsellor says you just replay it and replay it and one day you do it less, and eventually you stop doing it. Heres hoping.

What you absolutely cannot have any control over are flashbacks. My first flashback (after the initial baby not moving nightmares) was a shock. Totally unexpected and the start of the PTSD hell. We were several weeks post birth. Well and truly in to our new life in the NICU, and it was fine. We were in our little routine, E was doing well besides her frequent apneas, and we were daring to begin to think of a life after NICU. I had started breastfeeding and it was going well. It was time for a feed and I couldn't find the screen (Yes I know - breastfeeding is nothing to be ashamed of - but in NICU it is different. Busy, noisy, people in and out. You just try to do anything to invent some kind of calm 'normal' situation in which to feed - hence the use of a screen). Off I went in search of the elusive screen. One was in use next door. I had just been looking in the cupboard when I saw the other screen in ITU. I opened the door and asked the nurses if I could pop in and get it. In I went, got to the other side of the room when suddenly I was awash with beeps, dings, more beeps, the sound of ventilators, cpap, vapotherm, syringe drivers, hushed voices, telephones ringing. It took my breath away and I couldn't breathe, suddenly I was transported back five weeks, to a very different place, a dark place, and I knew I had to get out of there. I ran out with the screen, tried to breathe, and tears rolled down my cheeks. And that was the start of this big new mental illness that I continue to battle to this day.

The flashbacks do not give warning. They just come. You can be doing the most random or indeed 'normal' thing and boom - there's a flashback. If you have been talking to me and it's clear that I'm looking at you but it's not actually going in, it is because my brain has just decided to do a little rendition of E's birth, or when I first saw her, or when she first went blue, or sometimes, if it really fancies giving me a hard time, I'll have a flashback of all the 'highlights' of our 7 weeks in NICU. When I'm trying to clear my mind through running, or a long walk - bang - there it is again - it might be the morning before her birth, or the drive to the hospital, or the walk up the labour ward, or The Husband's face - trying to be normal and calm but full of worry and dread.

If you have been with me and I jump out of my skin if I hear a beep that sounds like an alarm clock - it's because that is the sound E's apnea alarm makes, and in those early days of being home she did stop breathing every now and then. Those bloody beeps are everywhere - in pizza express, in starbucks when the panini is ready, and on people's oven timers! 

If you noticed I was truly miserable in the run up to E's first birthday it was because that week was perhaps as bad as being in NICU. Every day leading up to the birthday I could reel off every single thing I was doing, right down to what I was wearing. I scrutinised every detail, wondering if I could have maybe picked up that something was not right, did I miss a warning? Did I miss a vital bit of information that could have changed what was about to happen? I could not tell most people how much I was dreading the birthday. How can you explain that the birth of your baby was in fact the most horrific terrifying day?

I scrutinise everything actually, all of the time. I probably replay the day of the birth every single day. Sometimes all of it, sometimes little details - what was said, the faces, the looks of worry and dread, the silence after she was born, her first whimper some time later, the fleeting first view of her from afar I had as she was hurriedly whisked out of the room. Or I play out how things may have been different, the scan at 3pm had I not gone in, or if they did not successfully resus her after her birth, or if the anaesthetist had not got the quickest ever epidural in and I had been put to sleep. It truly is exhausting, and it seems to take up a lot of my thought process, rendering me mainly useless to participate in any tasks that require deep concentration.

This week I could not watch a video that one of my fellow NICU mummies posted of her time in NICU. I started watching it, heard the beeps and noises of ITU, felt sick, could not breathe, got palpitations, and had to turn it off before it turned in to a full blown flashback. It still did, of course, despite not watching the video. 

And the latest demon to the mix is the good old panic attack. A flashback, plus a mild stressful event like the house getting untidy, leads to an inability to breathe and feel my hands and feet. It's ridiculous behaviour. It's behaviour that prompts an eye roll from an A+E nurse like myself, yet it is now behaviour that I simply cannot control. 

So there you have it, a little insight in to my mind and the daily battle that is PTSD. If you know me, hopefully it explains a few things. If you don't know me, hopefully you now have a little insight in to this cruel illness, and can hopefully help someone you know if they have it too. 

The healer is time apparently - that old cliche :)