"About 15 minutes from my apartment, my body gave out. At first it was just my head - it grew hot, and within minutes, my brain felt like it was on fire. Pretty soon, the rest of my insides were burning up, too. As the skin on my arms and face turned red, and my limbs grew heavy, I felt bewildered."
"Three years later, I barely crash anymore. I'm still chronically ill; I have long covid, and two other conditions: postural orthostatic tachycardia syndrome (POTS), which hinders my ability to stand for long periods, and mast cell activation syndrome, which can cause my body to randomly react like I'm allergic to something even when I'm not."
"This means I have to be careful about how I spend my time and what I eat. But as I write this, I can't remember the last time I spent an entire day in bed. 'Sheer luck' is probably the best way to talk about at least some of the improvements I've experienced."
A chronically ill individual with long COVID, POTS, and mast cell activation syndrome describes experiencing a severe crash after a 40-mile bike ride in January 2023, characterized by sudden onset of burning sensations, cognitive dysfunction, and immune system activation requiring extended bed rest. The crash occurred despite feeling fine during the ride, illustrating the unpredictable nature of post-exertional malaise. Three years later, through careful management of activity levels and dietary choices, the person reports significant improvement, rarely experiencing full-day crashes anymore. The recovery involved learning to pace activities appropriately and understanding personal limitations, though the author attributes some improvements to luck while suggesting other factors contributed to better symptom management.
#long-covid #post-exertional-malaise #chronic-illness-management #pots-and-mast-cell-activation-syndrome #activity-pacing
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