You can do this Sarah I synced myself up for my biggest daily challenge – having a shower. It took all my energy, mental focus and intention to complete something which was for most of my life an everyday, mindless task.
Ever since the heatstroke, nearly one year ago, my body would panic with a change in temperature; a summers day, Sydney cold front, washing my hair in the shower, diving in for an ocean swim. Even washing my hands in hot water gave me a severe stress response. I remembered how hot I felt on the day of the triathlon race which gave me brain inflammation, the warm water temperature on the swim was nearly thirty degrees and outside was a humid thirty-four degrees.
My occupational therapist explained this was a form of Post Traumatic Stress Disorder, an overactive stress response related to the experience of the heatstroke at the triathlon race. Now with this new knowledge from my therapist, I was ready start healing triggers.
It was a new day, I looked forward with hope that I could begin to do something about this condition and rebuild a new brain. I rationalised, my brain got me into this, I can get out of it. I’ll figure this out. But how?
I desperately wanted to swim in the ocean, I remembered how I’d tried many times over the last few months to jump in the water. The last time was a disaster. I had walked in to my knees, and then a wave came. The ocean gave me a big hug and I went under. Immediately, my heart started beating rapidly, my head spun and lost blood flow to my brain.
I practised taking thirty second showers as a starting point. It gave me an opportunity to practise change in body temperature without giving myself a stress response. I pondered, I’ll start small, baby steps and work my way up to the ocean. I will swim again one day.
After a successful thirty second shower, I triumphantly stepped out of the shower. I had done it! Success! Oh I can do this, too easy mate.
But I had stepped into three inches of water, a puddle of water covering the entire bathroom floor.
Startled, my heart started beating rapidly, BOOM BOOM BOOM, oh no I thought, what have I done? A charge flowed through me, an unconscious panic and my hands started to shake uncontrollably.
I realised had left the tap run in the sink. Water flowed from the basin, spilled over the sink creating a river heading towards my bedroom.
I had been forgetting things, my memory would fail on me, I’d wander around the house for hours on end, I walked into the kitchen and forget why I was there, walk out and then go back, brainless zombie, this flooding was the worst by far.
The tremor in my hands made it difficult to fix this on my own, I called for reinforcements. Help! I called to my parents, as I threw a towel down to create a dam before the water could invade my bedroom. My parents took over building the dyke and I ran for safety of my bedroom away from the scene of the crime.
I flooded the bathroom. I thought, as I was lying on a bit of dry part of my bedroom floor. Oh, that was so scary! My mind went over and over this, my breathing stopped, my vision blurred, lying down vertigo started, pressure in my head. The world started to spin. My body went from hot, cold, hot again. The blood in my limbs rushed in and out, it created cold arms and legs. I felt like I had witnessed a horrific traumatic scene which treated my life.
A mountain of towels contain the water, thanks to my parents, disaster averted. I thought back to my optimistic attitude before the shower, my positivity now vanished and replaced with fear, a deep fear of failure, I’ve been going so well and here I am going backwards again. These thoughts closely followed by the continual loop, My brain is broken. I am losing my mind. I will never get better. I am stuck like this forever.
I remembered what my therapist taught me, the brain has a negative bias, in other words it’s always looking out for threats, dangers and ready to respond. I figure my brain is permanently switched onto negative bias. It’s in war zone. My response was disproportionate to the incident, a little bit of water had flipped me out. I had no control over it my response. I wanted it to stop, if I tried it didn’t.
Then headache returned, taunting me, I’m back Sarah.
Oh fuck off. Not you too.
I texted my friend Serena as I despaired, still lying on the floor in a panic controlled by my mind and body, I’m all the way back at the beginning. This is shit. So frustrating. Fuckkkkkkkk
She texted back, Stop this pity party, Sarah! You need to control your response to stress.
I can’t. This is BS. My brain is broken.
Remember what your OT told you about combating the negative bias.
I remembered what my therapist taught me, You need 10 times more positive to counter the negative thoughts. Get your head back to positive images. Things you love to do. Feelings of those things.
Six hours later, I am still on the floor, patiently waiting for my stress response to come down, shallow breaths, deep breaths. I want to get better. I think about the ocean. I think about the life I wanted to get back. I would have to go through this to get out of this.
So I talk to my brain. I know you want to be upset brain, but we have work to do. I can’t be having you getting so upset over things, even if you did flood the entire bathroom and needed a dozen towels to clean it up. It’s not that big a deal. If you are wasting energy over these trivial matters, how are we going to work together to get on with the brain exercises and rehab we need to do together?
My brain and I needed to work together. I had no idea how we would do this. I needed to start thinking that my brain and I were on the same team. Until now, I had been battling with my brain. Up until now, my brain had been my enemy, it caused me pain, grief, inconvenience, had a mind of its own. It hurt me and kept me housebound, on dry land, away from my favourite thing in the world: ocean swimming. I had to make a choice to find a way out of this or stay like this forever. I had spent half a day on the floor, freak out, I needed to stop this. I needed some help to do that.
Continued next week blog