At the height of summer, I raced standard distance triathlon race on the Gold Coast, happy to share event with my sistas, the three Sarah’s and Steph. Dr Sarah, Coach Sarah and Steph “from Brisbane, not really Brisbane cause she’s too far north”
I love seeing happy faces around me, waving and saying hello on the course, everyone knows I’m not afraid to make myself heard out there. And if an extra few minutes in transition chatting to a competitor results in a new friend, I reckon time well spent. After all, it’s not the Olympics.
People ask me, did you realise you were overheating, burning up from the core, overriding the body’s cooling mechanisms, shutting down blood flow to the major organs; brain, heart, digestive system, muscles, starving these systems of oxygen?
No. I felt normal, the normal shit, every race feels like shit doesn’t it?
Red cheeks, gasping for breath, head spinning, feet swollen, blisters burning, feeling like you’re gonna die. I was actually pleased with myself for trialling a long sleeve tri suit for first time, splashing water on sleeves to keep cool enough to finish within my usual time.
At the finish line, packet of Smith’s salted chips in hand, my post-race snack, craving the crispiness and salt, putting some food in my belly, to stop the nausea from gels, energy drinks, electrolytes.
Jumped in the car and headed south towards home. Dropped by Ballina for a ‘dirty burger’ (Steph’s favourite post-race food celebration).
The headache began and it hasn’t stopped since.
Something Isn’t Quite Right
I see a GP the day after the race. I tell her I don’t feel quite right, everything seems a bit off, my brain is fuzzy and I have this headache.
She runs the usual round of blood tests for people presenting with the vague, not quite right body symptoms.
These results all come back ‘normal’: no dehydration, no muscle breakdown, that unpronounceable R-word.
Doctor running out of ideas offers, well you could be pregnant.
She hands me a pee jar, pop down the hall, bathroom on the left, and you can do a pregnancy test.
I said, I’m not pregnant.
She says, but how would you know you’re not pregnant?
I say, I just know. I’m here to see you about a headache.
She says, well you don’t for sure
I say, I’ve got my period.
She says, oh, ok then. Maybe you aren’t pregnant.
Doctor slips the pee jar back in the drawer.
Where Am I?
The headache continues, daily unrelenting, along with dizziness, nausea, as if my head is filled with lead, and I need to lie down until it passes.
I’ve lost all sense of time, I’ll be staring at the wall and trying to distract myself from the throb, throb, throb of my head, and three hours will go by.
These daily headaches make me mentally paralysed, I cannot remember thoughts or what I did the day before, everyday is beginning to blur into one, my brain hurts.
So, I try my best to carry on with life. The Eastern European genes in me, ‘never say die’ blood in my veins tell me “you’re not dead yet, keep going” so I trudge on through the brain fog juggling my biz, my life as best I can.
It’s becoming apparent by the day, I’m beginning to lose more brain function. My brain, it’s amazing ability to plan, strategise, manage is deteriorating. My thinking is foggy, slow, like I’m moving through underwater.
Text messages go unanswered, phone calls ignored because I find it too difficult to have a conversation. Passing out in middle of the day on my bed fully dressed for client meetings.
One day, while passed out, my phone buzzzz wakens me from deep underwater brain fog.
A client is calling, CEO from such and such biz: Sarah? Hello, is this a good time?
Me: Hi, huh? Who is this?
Client: Ok. So, our Canadian partners want to discuss a new marketing partner for our North America biz ….
Client: … so such and such from Seattle office wants to call you…
I look around me, where I am? What time is it? Why am I on the phone? How did I get here?
And everyday, getting lost more and more inside my own head. Unable to articulate my experience, unable to tell people how amazingly scary it is to be stuck inside yourself, broken, shattered thoughts, the more I try to think in a straight line, with revenge the headache pounds more.
With each day, losing grip on reality and losing my sense of place in my world. I’m locked in a prism of pain and a world which seems too much to process.
Pee Poo Blood and more
A week later, there’s new symptoms with the headache: vertigo, constant fever, sweats, orthostatic hypotension – fancy word for low blood pressure when standing up and my thermoregulation was dysfunctional.
I’m sleeping under heavy, soaked beach towels, dripping water all over the mattress, fan pointing at me, ice pack on my forehead and STILL burning up a fever.
I’ve developed a photo-sensitivity to sunlight, now I’m living in a cave, shutting all curtains, running from shade to shade when out on the street, hiding under a towel when travelling in the car, realising I’m slowly turning into a vampire.
I’ve lost my appetite for any food, my gut has switched off and is scared to come back. I cannot seem to eat anything without wanting to throw up, one exception, cheese, hmmmm cheese on crackers seems to go down well.
I’m in shopping centre, the sun outside is so bright, I can’t see anything, I wait in the disabled toilets. Rush in. Find toilet. Want to vomit. A lady walks past. You don’t look good. Let me stay with you.
Any hot sensation sets off my hypersensitive hot body, sitting in front of a hot plate of food fills me with dread and I break out into a hot sweat. Then it’s back into the cold shower for another quarter hour to cool down.
As much as possible, try to continue life as usual, however this is difficult when I’m unable to walk out in the sunshine, drive in a car or sleep without a frozen bottle of water strapped to my chest – not to mention a soggy mattress.
Not at all keen to return to ‘your headache means you could be pregnant GP’, I see a new doctor who does more tests for everything she could; blood, poo, hormone, rouge parasites, cancer, tumours, hepatitis.
One test, I had collect ALL my pee in a jar for 24 hours, highly inconvenient to carry around a 2L jug for a day. So I hid at home, in my vampire cave and didn’t drink much.
Thankfully, all tests came back within normal ranges,
I’m gonna refer you on to a specialist, she says.
I’m on waiting lists for multiple specialist doctors, people who know about brains, people who can help me. I’m on waiting lists, some are weeks, months, years to see a doctor. I’m on cancellation lists, last minute call up lists to see half a dozen doctors. The soonest a neurologist can see me is 14 months.
The first specialist I see is a Sports Doctor at the NSW Institute of Sport. Maybe he knows about heatstroke and athletes?
I sit in waiting room at the NSW Institute of Sport. The room is cold, the air conditioning humming in the summer heat. I am sweating with a fever, in shorts and singlet.
Doctor looks puzzled, Yes, your symptoms are unusual,
Yes? I say
He says, unusual but it’s because you sit outside the bell curve of normal. And offers no further explaination or suggestions who to see next
Yes, I thought, definitely. And the edge of the bell curve is living hell.
I see other doctors, neuropsychologists and the like, all who look at me with same perplexed look as the sports doctor. Some have been more truthful with their opinion and straight out told me, I don’t want to take your case on, you are too complicated – we’ll save you the consult fee. I appreciate honesty but it means I’m still unsure what’s going on.
Can It Get Any Worse?
While navigating the waiting lists and doctors appointments, the pee-ing, the poo-ing, the testing, the headache is still there. The pain is too distracting to do anything. I even feel the headache while I’m sleeping.
Then there is THE HEADACHE.
The headache that is the definition of a headache.
It starts slowly in my neck, throbbing, blood pounding in my veins, I was so use to the throbbing, at first I didn’t notice what was happening. Then suddenly, I was hit in the head with – I can’t remember.
All I want to do is take the pressure off my neck by lying down. I can’t even communicate I’m in so much pain.
I find my head on the floor, cheek on the tiles in the bathroom, hugging the toilet coolness on my face feels nice.
It’s that sort of pain that makes you think death would be a good option – it is that bad.
All these weeks, the new is GP desperately trying to do more tests, nothing’s coming up. How can no one see what’s happening to me?
I had raced in hotter, humid-er races, I’ve raced longer, with less water, done the same race a dozen times or more so why this time did I get heatstroke?
Will I find someone to believe me?
I think maybe I have something nasty, like an infection in my brain, or a brain tumour or something worse, like cancer.
I cannot wait anymore. I need to see someone about this headache.
Hospitals have brain wards, they might know about brains, headaches, they may take seriously.
I head to Emergency.
Thanks for listening