You, Me and My PTSD by Amanda Cowan

June is PTSD Awareness Month and my wonderful manager, Garry Walker, asked me to write a blog about my experience of living with PTSD. My initial reply was “Why not?” But almost immediately, I felt a monumental sense of responsibility. How could I possibly explain it properly? How could I do justice to all the people - like me - who live each and every day with debilitating symptoms? How could I inform and inspire those who don’t?

I spent days tying myself in knots, trying to find the right words. Honestly, I just couldn’t. The weight of the responsibility felt crushing. It almost triggered me, because feeling “unable to be heard” is one of my many, many triggers. And that’s when I realised: that’s exactly why I needed to write this. People need to be informed about PTSD from people who actually have it.

I’m not a PTSD expert.
But I am an expert on my PTSD.

The “Why”

The next heavy, crushing debate I had with myself was: How do I explain how I ended up with PTSD? I reached out to Garry Fraser from the SOL Project to ask for advice on how to answer this question. His response was spot on: “Short answer - you can’t.”

Because explaining why wouldn’t be a blog - it would be a novel. Or a whole series, in my case! In reality, people don’t need to know the “why”. They need to understand what it feels like, day to day, to live with it.

As Garry also said: “Healing is a full-time job.”

So, leaving out the “why”, let’s talk about the symptoms.

The Nights

The last question I asked myself: How do I explain it? How do I explain you, me and my PTSD?

How do I explain that I have rigid evening and morning routines that I cannot deviate from? If I deviate, I trigger and then I have to start all over again.

How can I make people understand that I need to have a salt bath, mediate, stretch, walk and take a ton of medication before I go to bed? Or I can trigger. I take seizure meds, anxiety meds, supplements, lavender oil on my body and need deep, loud, pink noise on in the background. I can’t have a bedside cabinet because I’ve burst my head open on one, twice. My side of the bed is bare. I’ve also been diagnosed with Narcolepsy, which is theorised to stem from extensive, ongoing trauma.

A good night’s sleep for me is only waking up five or six times, for a few minutes each time.
I haven’t slept through the night since I was a baby.

How can I make another person understand that I wake up in the middle of the night, paralysed? Hallucinating – both visual and auditory. There is a demon, or multiple demons standing all around me. I feel them sitting on my chest, choking me. I feel like I’m being dragged around the walls. On bad nights, it goes on for hours. On good ones, a few minutes.

Sometimes, the nightmares are preferable.

Other times I wake up soaked in sweat, choking on my own sick. My husband has to roll me over. Then there is the times that my 5ft 4” wee, 8 stone self has been hallucinating and tried to commando choke my 6ft, built like a tank husband.

All it takes is three days out of my routine to trigger me back to ground zero.

The Mornings

How could I begin to explain that every day I wake up feeling awful, shattered? My optimum, functioning level is the equivalent to you being wide-awake for 36 hours.

Then starts the rigid morning routine:

• Talk myself out of bed.

• Shower.

• Breakfast that I nearly always puke back up.

• Boak while brushing my teeth.

• Another round of meds.

• A wee tapping routine.

• Morning affirmations – a reminder that the nagging, self-doubt is actually my PTSD/anxiety lying to me and the Narcolepsy tiredness making it worse.

• Breathing exercises.

• Self-talk in the mirror: “Be the adult who you would’ve needed to protect wee you today” because “these weans and your own weans need you on your A-game.”

• Smile at my kids, chat to them about what their day looks like.

• Remind them I love them, exponentially.

• Harass them, lovingly, for a hug.

• Go to work.

The Work

How can I explain what it is like to work with the most marginalised young people in my local area - the most traumatised and forgotten about young people, when I myself was traumatised and made to feel irrelevant?

How do I manage my triggers all day, every day?

How do I stop myself from melting down and losing it when a young person is relaying a horrific event in their lives and that event mirrors one in my own life?

How can I make you understand that a smell, a sound, a statement, a song, a jumper, a jacket or a story can trigger me?

If I have repeated triggers, I am not like some PTSD sufferers, it does not show outwardly. Instead of crying, rocking or hyperventilating, I collapse.

This is because I have another trauma-related condition called Cataplexy. When triggered, my central nervous system shuts down. My brain stops sending messages to my muscles. I fall to the floor, unable to move, fully conscious. I go cold because my blood rushes to pool around and protect my organs. I look dead.

I've choked on vomit during these episodes. I could die if someone assumes I’ll just “get up.”

Or worse, a drunk person tries to “revive” me.

When I come to, I am exhausted, confused, and cold. I need the comfort of my husband.

The Pain, The Brain Fog

Functional Neurological Disorder - yet another trauma condition - means I live with excruciating body pain. It is also responsible for me becoming intermittently and repeatedly unresponsive during the night – but my neurologist is sure it will not kill me!!

Strong painkillers can’t be taken during the day as they interact with Narcolepsy, knocking me out cold, sleep attacks. So, I push through. Suffering the pain. Quietly. There’s no point in moaning about it. The pain will be there whether I’m happy or sad.

So - happy it is.

I forget words. I can’t remember my own name. I get words mixed up, use random, unrelated words. I tell you a story, all out of sequence (with four mini stories in-between). Absence seizures, automatic behaviours, losing belongings, dropping things. Floppy left leg, floppy right hand. My throat randomly closes, making me choke. The constant, continual injuries. I’ve broken teeth, my nose, cheekbones. Burns and head bangs. I’ve set fire to the kitchen, flooded the house, and brought a bath through the living room ceiling. My husband has replaced our kitchen ceiling five times.

The day ends, my night-time routine starts over again. Rinse and repeat.

All of this whilst trying to parent, to be a good wife, a youth worker and a generally decent citizen. And to top it all off – I also have ADHD.

The Guilt, The Love

Could you understand what it is like to live in a state of extreme hypervigilance? The paranoia of being alone and seeing a stranger. Paranoia, even when you are with people you know. The absolute, bone deep fear. When my kids were young, if they were going outside, they had to take walkie-talkies. Even though I could see them from the window.

Luckily, my boys understand. They joke, “It’s okay Mum, we’re too big for the weirdo’s van! They’ll never be able to get our 6ft bodies in!” But deep down, I feel guilty that my PTSD and other, trauma-related conditions has affected them. The years I spent battling with my own mind and body has cost me time with them.

I once overheard my eldest say to his ex, “Much of my early childhood was spent with my Mum mostly in bed, unable to function.”
It broke me.

Because it wasn’t a lie.
And because I knew it was true.

I’ve been the best mother I could be.
But PTSD stopped me from being a better one.

My boys disagree, but I know it is true.
Or... is that my pesky PTSD lying again?

So How Do I Explain It?

How do I make people understand what it’s like to live inside this body, this brain, this life?

How can I explain it? How?

I hope and pray that I just did.