I have this friend who starts going on and on (and on!) about trauma after we have a few glasses of wine. Ah, what a drag! I normally pour more vino into her glass and encourage the conversation to move to the next topic, as I’m pretty sure I’ve faced – and dealt – with my trauma head on. You know, the healthy way.
As a family we’ve had a good run recently. Tracheostomy- wise we’ve switched to a tube that may – at some point – be compatible with a speaking valve (Freya is currently completely silent). We have started trialling lower pressure settings on Freya’s night time ventilator. Freya even got discharged from palliative care (which, in practice, this means one less team to be copied in letters, but psychologically has been a massive victory for us).
But I’ve noticed a rather unpleasant pattern in my reactions to things: small, mundane, things blow out of proportion causing me to feel stressed out and anxious. Like how I felt the days leading to a much awaited break (without the toddler and the hubby) – nervously sitting at the edge of my seat for days, worrying about everything from getting snot-blocked by Freya catching a last minute bug to potential problems with my flights.
It gets worse with “big” events: News with potential significance hit me with forces of unexpected magnitudes. When we got told couple months back that Frey’s scoliosis and kyphosis have both progressed I turned into a sobbing mess for days: No, none of that “cross that bridge when need be” malarkey here. Full panic stations please! The end is nigh!
Consequently, living inside my head can sometimes be exhausting. And it’s made me think – why are my reactions so strong? And more importantly, how can I find a better way to deal with them? Have the traumas caused by having a seriously sick child caused me problems I’ve failed to register?
When we hear the terms like Post Traumatic Stress Disorder we think of soldiers reliving the battlefield in their minds after having safely returned home. We think of people surviving natural catastrophes, genocides, rape, torture. It’s a lesser known fact that PTSD is prevalent amongst parents of medically complex children.
It is hardly a surprise if you think about it. We get pounded with trauma from being dealt with terrifying diagnosis and poor prognosis to seeing our entire worlds changing in front of our eyes. We have hard hitting, high intensity acute situations where we come scarily close to losing our children (CPR on your own kiddo, anyone? Not fun I can tell you). Around us we see the devastation that losing a child causes our peers and every time we write yet another message of condolences to those bereaved we wonder whether we will be in their shoes one day.
PTSD related or not – how can we live our lives when we are dealing with huge stressors on pretty much continuous basis? That is the big question, with more than one answer. But here are some tips I’ve picked up along the way:
Recognising a problem is a HUGE step. It’s difficult, if not impossible, to fix something that you don’t know is broken.
Bottling it up won’t help. ” I successfully resolved all my problems by ignoring them and am extremely happy”. Said no one ever. Of those battling trauma the ones who do the best are the ones who manage to process it one way or another. The stiff upper lip or unachievable expectations of permanent, uninterrupted happiness imposed on us by social media have a lot to answer for when we explore root causes for mental health issues. We are so keen not to feel negative emotions that we fail to process them. Sometimes when you are feeling crappy you just need to feel crappy. You just need to be able to pick yourself and move forward afterwards.
Actively look for coping mechanisms. One of the things I have learnt since Freya was born is that when my stress levels go up, my self care needs to go up too. When the proverbial shit hits the fan we often de-prioritise those very things that pull us through the tough times. When I’m too busy embarking on compulsive problem solving to ground myself, everything seems to spiral into stress and anxiety. This is the very pattern I want to break.
Coping mechanisms are different for everyone. For me they include yoga, meditation, getting enough rest. Eating well and generally trying to be kind to myself. Recently I’ve taken up outdoors swimming – a refreshing dip into a 11 C pond gives an amazing adrenaline rush. To balance it all out in case I come across like a goody two shoes I do count Netflix binges and (tad too much) red wine as self care too – just not as the only source.
Seeking help is a sign of strength, not weakness. Picture this. You are in a car crash ad your leg breaks in three places. Do you seek help or suffer in silence, blaming yourself for having weak bones? When we physically get hit by force we don’t blame our bodies for breaking; why don’t we give our minds the same courtesy? As parents of seriously sick kids we go through some seriously messed up shit. No wonder if our minds struggle under the pressure.
I once read somewhere that it is not the load that breaks you, but the way you carry it. Smart words to remember when it feels like the world is dealing you a too generous a portion of proverbial lemons.