Living in the Moment
Chronic illness teaches you how to survive the present, but it still asks you to reckon with the future.
People often tell you to live in the moment when you are ill.
It is usually well meant. Sometimes it is even wise. But when your body no longer behaves predictably, the present can feel like the only safe place to stand. Tomorrow is uncertain. Next month is unknowable. So you learn to keep your eyes on today, sometimes on this hour. You focus on whether you can get through the afternoon without needing to lie down. So far today, I am winning.
But life does not stop asking questions just because you are trying to stay present.
The future keeps tapping you on the shoulder.
It asks about work. About money. About purpose. About how long you can keep doing this, whatever this now is. It asks what happens if benefits change or disappear. It asks what you will do if your energy never fully returns. It asks how you are meant to plan a life when you cannot reliably plan a week.
For those of us living with chronic illness, living in the moment is not a lifestyle choice.
It is survival.
But survival does not cancel responsibility, and responsibility has a way of generating fear.
One of the stranger things about long Covid is that it creates a double exhaustion.
There is the physical tiredness, the bone-deep, cellular fatigue that no amount of rest quite touches. The kind that turns ordinary tasks into negotiations. You know how it goes. Do I make lunch, or answer that email? Do I shower, or save my energy in case I need to leave the house later?
And then there is the cognitive and emotional exhaustion. The constant background processing. The calculations. The quiet accounting of risk and cost.
What if I don’t get better?
What if I do get better, but not enough?
What if the safety net I am standing on quietly frays?
These thoughts do not shout. They hum. They sit at the back of the mind, persistent and unresolved, even on the better days.
Especially on the better days.
Recently, something good has happened.
I am starting to earn a small income from my writing.
Not a fortune. Not enough to celebrate or plan a retirement in the Bahamas. But enough to matter. Enough to shift something internally, from this is just something I do to this is becoming something I would like to rely on.
Under normal circumstances, this would be clarifying. Encouraging. A sign that a new chapter is opening.
It is all that, but with chronic illness, it is more complicated.
Because income brings questions.
If this grows, am I well enough to keep up with it?
If it stalls, what does that say about me?
If it succeeds, is this the life I want to rebuild, or simply the only one that currently feels possible?
Long Covid has a way of turning opportunity into effort, and effort into risk.
Every step forward asks for energy. Every decision comes with a cost. Not just financial or emotional, but physical. When energy is limited, choices feel heavier. Less reversible. Higher stakes than they should be.
It is not that I do not want a future.
It is that the future feels very expensive right now.
Underneath all of this sits a quieter grief.
The grief of the life I might have been building by now.
The grief of ambitions put on hold.
The grief of not knowing whether “later” will ever arrive.
I used to imagine the future in terms of expansion. Growth. New projects. More capacity. Now I imagine it in terms of management. Sustainability. Containment.
How do I build a life that does not break me?
That question sits at the centre of everything. And it is not one I can answer quickly or confidently.
Fear for the future is not surprising when you are chronically ill. It is a reasonable response to living in a body that has already surprised you in painful ways. What makes it harder is the pressure to be positive. As if naming uncertainty somehow invites it. As if acknowledging fear is the same as giving up.
But pretending the future does not exist does not make it kinder. Your body knows when you are pretending.
What I am learning, slowly and imperfectly, is that there is a difference between planning and predicting.
Prediction tries to control outcomes.
Planning tries to create room.
I cannot predict whether my health will improve, plateau, or decline. I cannot predict policy changes, economic shifts, or how long this fragile balance will hold.
But I can plan for gentleness.
I can plan for flexibility.
I can plan for a life with margins, rather than one that squeezes every ounce of capacity.
That might mean earning less than I once imagined.
It might mean moving more slowly.
It might mean redefining success altogether.
And that redefinition brings its own kind of grief.
There is a temptation, when rebuilding, to treat the new life as provisional. Something to endure until the “real” one returns.
But the longer this goes on, the more I suspect that this is my real life, even if it is not the one I would have chosen.
So perhaps the question is not, Is this the life I want?
But can this be a life that holds the new me?
A life that makes room for rest.
A life that does not require heroics.
A life that allows fear without being governed by it.
I do not have answers yet. Only practices.
I love writing, and I will continue to show up to it, however much I manage on a given day, because it is part of how I remain present in the world.
I am learning to name fear without shaming it. To take opportunities without turning them into demands. To allow good things to be good, even when they are tiring.
Living in the moment is sometimes all we can do.
But living towards something … gently, cautiously, with compassion for our limits, may still be possible.
Even with long Covid.
Even with fear.
Even with exhaustion.
For now.
Paul
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 cover the costs of the podcast and website. You can subscribe to receive the latest articles and episodes in your email inbox. This is free, but you can also pay monthly or annually to receive it. To the people who feel able to support me financially, I am very grateful.
Thank you for writing this. It is exactly how I feel now. Off sick from a job that made me sick. What do I do next that won’t kill me. Or do I go back.