I never imagined that standing up could make my heart race, or that a simple shower could leave me shaking and dizzy. But that’s the new logic of my body a system that used to work quietly in the background, now full of unpredictable alarms and malfunctions.
People think Long COVID is about tiredness. They hear “fatigue” and imagine being sleepy or run-down. They don’t see the full picture: the dizziness that hits when I stand, the sudden spikes in heart rate, the flashes of heat and chills as my body loses track of its own temperature, the migraines that throb behind my eyes, the burning nerves that feel like they’re lit from inside.
Every day is a careful dance with these invisible forces POTS, MCAS, pain, reactivity acronyms that have become landmarks in a landscape I never meant to move into.
The Careful Planning
Before this, I lived on impulse. I could throw on shoes and go. Now every action requires calculation:
- Can I stand long enough to cook?
- How long before my heart rate spikes?
- If I shower now, will I have energy to eat later?
I’ve learned to sit to brush my teeth, to plan tasks around body temperature swings, to keep electrolyte drinks on hand like a lifeline. Nothing happens without strategy. What used to be automatic now needs a blueprint.
It’s a strange education, learning how fragile the body really is, and how many systems quietly keep you upright, stable, alive. When those systems falter, every movement becomes deliberate. Every moment, measured.
The Accumulation of the Unseen
The hardest part is how cumulative it all is. You can manage one symptom for a while the racing pulse, the heat that rises without warning, but then the others follow, layering over each other until you’re weighed down by an exhaustion that’s not just tiredness, but a total system overload.
You start to live defensively. You give up things one by one, walking long distances, cooking complex meals, standing in lines, even showering at normal temperature. Each concession feels small at first, but together they carve out a new version of life, one where every action has a consequence.
Accepting Help Without Losing Yourself
At first, I resisted. I wanted to keep pretending I could handle everything — that I was still the same capable person I’d always been. But Long COVID doesn’t reward denial. It humbles you, slowly and thoroughly.
So I began to accept help. A friend carries the heavy groceries. Someone else drives when the tachycardia is too unpredictable. At first, it stings, the loss of independence, the quiet ache of needing. But with time, you realize it’s not weakness. It’s adaptation. It’s how you build a new kind of resilience one that doesn’t rely on pushing through, but on letting others in.
The Breaks and the Breathing Space
Rest isn’t a luxury anymore; it’s a form of survival. I’ve learned to schedule recovery like appointments to stop before the crash instead of after. It’s frustrating, to live within such narrow margins. But there’s also something unexpectedly tender about it, the way it forces you to notice small moments: the calm after a flare, a few hours without pain, sunlight through the curtains when your body is finally still.
The world keeps spinning fast, but I’ve learned to live in slow motion. Every day requires surrender but also, oddly, courage. The courage to keep going inside a body that doesn’t follow the rules anymore.
A Quiet Redefinition of Strength
Strength, for me now, isn’t about endurance. It’s about awareness. About knowing when to pause, when to ask for help, when to say “not today.” It’s about understanding that survival itself in the face of a body that’s unpredictable, reactive, sometimes unrecognizable, is its own quiet kind of heroism.
Long COVID took away the ease of my old life. But it gave me something else: perspective. A deep, unshakable gratitude for the smallest things a day without dizziness, a meal enjoyed without pain, a body that, even when faltering, is still trying its best to keep me here.
Long Covid Journey 