The Ongoing Struggle – My journey with PTSD & PND

This may be the hardest post I have ever written (and may ever write).

Mental health is a taboo subject in my family as it is in many families across the globe. Sadly, people still see mental illness as a sign of weakness, they label it negatively and unlike other medical conditions that happen ‘to us’ people often believe that mental health issues happen ‘because of us’. The truth is I was one of those people too; a fact I’m ashamed to admit today.

After my girls were born, after Charlotte died and after the 115 days we spent in the NICU – I genuinely thought we’d survived. YES I was terribly sad (and broken) that Charlotte was no longer with us and YES I understood the gravity of the challenge Madeleine had faced to still be here after being born at 24 weeks. BUT I never appreciated the toll it would take on me more than two years later. It’s something I am learning to deal with every day.

Someone close recently said to me that “I thought you were ok, you dealt with it all [at the time] really well, I genuinely thought you were fine, so I didn’t think you needed any help/ support”. This struck a chord with me deeply. I have reflected on those words repeatedly. The truth is – we have no choice to survive things, you just have to find a way. Real strength is not something we are gifted or something we can learn. It’s something you are forced to find, something you are forced to portray. You cannot spend every moment in despair, in desperate search for an alternative – as much as you might want to on the inside. Strength, at least for me in those early days, was a mask, a self-protection mechanism that enabled me to focus on the task at hand – my surviving daughter’s life.  I, in fact, was anything but OK.

But as time passes and her survival is no longer something that consumes me nor does every damn development milestone us premmie parents are constantly reminded of, I am becoming increasing burdened by what happened to my girls, to me and my husband and to my family and friends. These last 12 months have been incredibly difficult and my grief, sadness and anger completely take over my body at times. I feel isolated and I know that everyone, especially those closest to me, are just expecting me to ‘get over it’. But I know I CAN’T get over it, I know that’s not my answer. I know I need to find a way to live with ‘IT’; not despite it, not against it, not because of it – JUST WITH IT!

Things for me got really bad at the start of the year. I had recently had another baby girl (full-term this time) and the whole pregnancy was a very anxious and stressful time, as I know it is for many of us in our situations. Every pain sent me into an internal panic that I felt I had no control over. I was convinced my baby was going to die and/or come early. As irrational as all that sounds, I couldn’t help it. In a small way, I think my mind was preparing me for the worst in case it happened – AGAIN.

I had a very significant ‘event’ when my newborn daughter was about 3 months old and Madeleine was about  20 months. I was done. I wanted to leave it all behind. I was incredibly desperate for my pain to end, to have Charlotte back; I just wanted to be the person I was before IT all. And in some crazy way I thought it would be better for everyone if I just checked out, in my mind at least I wouldn’t be causing so many people so much pain, my pain would be over and I could just be ‘with her’. I was consumed by my grief, by my pain, by my loss.

It was from here my husband forced me to seek professional help – I hated him for this at the time. Talking about it to a stranger was one of the most painful things I have ever done and in truth still is. But I have learnt what PTSD is and have accepted that I suffer from it and I now know I had PND with my last pregnancy. I’ve learnt lots about triggers and have come to identify what mine are and I’m working on strategies to help me avoid and/or prepare to deal with my triggers every day.

It’s not a silver bullet and it still catches me off guard [regularly]. I recently had a very significant episode at work (of all bloody places) after listening to a motivational speaker who spoke about many of my triggers. I was totally unprepared for this and it sent me into a very deep spiral. Many of you know the ones I’m talking about; you can’t breathe, you can’t stand up, you can barely see. The pain is so intense and overwhelming and in those moments I would happily just close my eyes forever – but you eventually come through and your senses return, your breath is audible and your heart beat is not thumping in your ears. The pain is still there (as it is always) but you’re back to living WITH IT.

And, just this week we had to go back to the hospital where my twins were born (for Maddie’s 2 year development assessment) and as we drove into the car-park I was paralysed with the same familiar fear and pain again, uncontrollable tears of anxiety overtook me. I didn’t expect this; I have been back to this hospital many, many times without this reaction. It just goes to show that it can sneak up on you unexpectedly – and I think that’s OK. The aftermath of our NICU stay, our daughter’s death, a new baby and my own internal guilt has left a permanent scar on who I am as a person and I’m still learning to live with this new reality every day.

I suppose my biggest realisation this year is that trauma and grief are not one-off events, they are journeys with no defined end. For those of you who are also travelling this road, my heart is with you. I have no advice, as there is only one way forward – YOURS! But I do wish you increasing periods of peace, happiness and love along the way and you are not alone.

With love to all our premmie families, forever changed.

Alyssa

For my darling girls, all three of you