Chronic Tri Hard
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š«Heart failure to Ironman 70.3 2026 šµāš« Training with POTS & EDS š©µSponsored by KX Pilates Aberfoyle Park šāāļøCoached by SEPSAšļøSupporting Flinders Foundation
30/05/2026
I felt off this morning, but BP looked ok, so I medicated as usual. I used my wheelchair to ārunā errands with the family, but still had a little system reset (aka syncope/faint) in Myer. I felt it come on: stuck in yawn, vision fading, left ear ringing, intense body fatigueā¦ cue armadillo-ing in my wheelchair. I checked my BP when we got back to the car and it was again, fine. But my HR has been slowly dropping all day, and so that is what caused the lack of blood to my brain & subsequent faint. Aahhhh pathophysiologyā¦ I love teaching it. I donāt love experiencing it.
Sleeping is a dangerous activity. BP is optional though, right? Gonna go drink the ocean. Excuse me.
27/05/2026
First swim in 2 weeks thanks to a ni**le in my new shoulder that wouldnāt quit. She seems ok now. Though I feel like Iāve completely forgotten how to swim š«
26/05/2026
Those words are supposed to be reassuring, but when your child is screaming and writhing on the floor in 10/10 pain, it is not reassuring at all. Sometimes the hardest part of living with complex chronic illnesses isnāt the symptoms themselves; itās being told thereās nothing wrong while watching your child suffer. No pain is normal.
24/05/2026
Baroreflex failure detected. Border collie initiating emergency sit protocol. ANS: 0. Harvey: Smug.
23/05/2026
People often think dysautonomia only affects heart rate, but blood pressure regulation can be just as unpredictable.
With POTS and HSD, my autonomic nervous system doesnāt always adjust blood vessel tone, blood flow, and circulation the way itās supposed to. Things like standing, heat exposure, showering, dehydration, stress, medications, and even time of day can significantly change cardiovascular responses.
The shower data is a good example. Heat causes blood vessels to dilate, which can trigger compensatory responses from the body and leave me feeling symptomatic, even when the numbers themselves donāt always look alarming on paper.
Dysautonomia is a balancing act of trying to keep the cardiovascular system behaving itself. Itās so much more than āfeeling dizzyā.
18/05/2026
And like, not to brag but I can turn seated laundry into an interval sesh. So yeah.
17/05/2026
My will to live and my blood pressure may be tanking but my commitment to fuelling is unwavering.
The assignment was 2 hours at 120ā130 bpm. Very reasonable and achievable. In theory.
Instead my HR hit 140 almost immediately, despite the effort feeling easy. Thatās pretty common for me when my body is compensating hard to maintain blood pressure and circulation when Iām upright.
But the fun started when my HR suddenly dropped into the 80s mid-ride and I started feeling absolutely awful because my blood pressure and circulation dropped too much to sustain the effort.
With POTS/dysautonomia, HR changes arenāt always a reliable reflection of workload. Sometimes a dropping HR during exercise is actually a warning sign that the system regulating blood flow is struggling badly.
Yawning is a warning sign that a faint is on its way. So instead of finishing the ride, I finished as passenger princess while my husband drove me home in a ride of shame.
I feel like Iām having more losses than wins lately. But statistically that has to change eventually, right?!
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