Every Day Is Opening Night
What the Relentlessness of Long Covid Really Feels Like
There are mornings when waking up feels less like easing into a new day and more like stepping through the stage door of a West End theatre.
The curtain hasn’t even lifted yet, and already you’re exhausted.
You know the drill. Costume on. Lights up. Smile. Hit your mark. Deliver your lines. Make it look effortless. Appear composed and competent, even when your body feels like it’s running on whatever’s left at the bottom of an old AA battery.
People without chronic illness can’t quite grasp this performance element of long-term fatigue. They picture tiredness, the sort that melts away after a solid night’s sleep or quiet weekend. They understand a short run of being “on”, a few frantic days, a busy family gathering, the emotional hangover of a stressful week.
But they don’t understand what it means when the run never ends.
The Show That Doesn’t Close
Living with Long Covid often feels like being signed up to a show every day with no closing night.
No season break.
No interval.
No understudy to step in.
No chance to step into the wings and whisper, “I can’t do another round of this today.”
Instead, morning arrives and the next performace is waiting.
Even on days when your faulty battery only charges your body to twenty percent overnight, the world still expects a performance:
manage the symptoms, pace carefully, plan each movement, anticipate the dips, cancel the non-essentials, and try to exist without tipping the delicate balance that keeps everything from collapsing.
It is remarkable how normal this becomes.
You adapt. You learn your cues. You improvise when your body throws the script across the room. And most days, you simply get on with it, not because you’re superhuman, but because the alternative is… well, there isn’t one. The show must go on.
Unpredictability: The Unsung Villain
The part outsiders rarely see is the unpredictability.
A “good day” can vanish by lunchtime.
A short walk can undo an entire week.
A quiet morning can turn into a crash by mid-afternoon.
Trying to manage all this is like juggling while someone else keeps changing the number of balls mid-air.
It isn’t just the fatigue.
It’s the thinking about the fatigue, the calculating of the fatigue, the relentless assessment of what you can safely afford today without bankrupting tomorrow. It’s the management layer of chronic illness that’s so exhausting, the invisible admin of simply being able to function.
People often say, “I don’t know how you do it.”
And honestly? Sometimes I don’t either.
The Treadmill No One Signed Up For
Even the strongest routines can falter.
Even the most determined pacing strategies buckle under the weight of long-term exhaustion.
Some weeks, the treadmill of maintaining a life while managing an unpredictable illness feels like it’s running just a fraction faster than you can handle.
Most days, I can live with it.
Most days, I can accept the limits, navigate the symptoms, and find moments of life that still feel like mine.
But then there are the other days, the days when the thought of performing the same routine again feels unbearable. Days when I want to step off the treadmill entirely. Days when I don’t want to pace or plan or think strategically. Days when I don’t want to “adjust my expectations” or “listen to my body” or “be kind to myself.” Days when I don’t want to be chronically ill at all.
On those days, the best I can do is what I actually do: stay home, do nothing, let the world shrink to the size of my sofa.
Those days aren’t failures.
They’re resets.
They’re the backstage moments that keep the whole show running.
What People Don’t See
Perhaps the most misunderstood part of chronic illness is the contrast between what others see and what it takes to sustain it.
They see us upright, functioning, speaking, smiling, and assume that means we’re “better,” or “recovering,” or “nearly back to normal.” They imagine that the energy they see is the energy we actually have.
What they don’t see is the cost.
The pacing behind the scenes.
The collapse after the conversation.
The reordering of the day around a twenty-minute task.
The emotional weight of accepting that tomorrow will demand the same effort all over again.
They see the show, not the strain.
And Yet — We Keep Showing Up
Some days with Long Covid are about resilience.
Some are about surrender.
Most are somewhere in between.
But here’s the thing that keeps me going: despite the relentlessness, despite the exhaustion, despite the uncertainty and the thousand small calculations that shape every day, I’m still here. Still navigating. Still learning. Still adjusting. Still trying to build a life that fits around the limits rather than collapses under them.
Not because I want to be inspiring, heaven knows no one with chronic illness is aiming for that job title, but because living is what humans do. Even when it’s hard. Even when it’s exhausting. Even when every morning feels like another opening night.
Some shows run because the actors want applause.
Ours runs because we’re still here, still moving, still trying and that, in its quiet way, is extraordinary. Our story matters.
Life with Long Covid is more than a few articles; it is also:
A community which you can find at www.lifewithlongcovid.co.uk
A podcast which you can access through the website or through Apple and Spotify, just search for ‘Life with Long Covid’.
I have also produced a short book that details some of my podcasts in short, easily digestible chapters. You can read it when you have the energy. It’s available on Amazon here.
Sales of the book help me with the cost of the podcast and website. You can subscribe to receive the latest articles and episodes in your email inbox. This is free, but there is also the option to pay monthly or annually to receive it. To the people who feel able to support me financially, I am very grateful to you.
You state the way we are feeling and living our lives through and with our chronic illnesses so well.
NICE ! After 3 years of this Crap.... & asking Myself Why am I Still Walking & Talking ? We must have a Story 2 Tell