There was a moment, not that long ago, when I thought I might be done with them.

Not completely. Not dramatically. But quietly, subtly, as if I could just… move on.

Oxygen therapy had lifted my baseline. Not back to where it once was, but enough to make life feel a little wider again. A little more possible. And with that came a thought I hadn’t entertained for a while:

Maybe I don’t need them as much anymore.

Mobility aids have become part of my life over the past few years. Not by choice, but by necessity. They arrived gradually, then suddenly, then permanently. Each one marking a point along the journey where something had been lost… and something else had to take its place.

But now, with things slightly improved, I found myself resisting them.

Not in a dramatic way, just small decisions, repeated daily.

I’ll leave it behind today.

I’ll manage without it this time.

It’s not that far.

I’ll be fine.

In my head, this was progress.

In reality, it wasn’t.

The Quiet Experiment

For a few weeks, I pushed against using them.

I wanted to see what life would look like without the constant calculation. Without having to decide what to take, what to set up, how far I could go, or whether it was worth the effort. Without carrying the visible reminder that things are not as they once were.

There is a simplicity to that kind of life.

Or at least, the illusion of it.

Because what I discovered, quite quickly, is that the cost doesn’t disappear. It just moves.

Without the aids, the effort increases. The margin for error shrinks. The recovery time stretches out. Small outings begin to carry a hidden price that is paid later, often in ways that are harder to predict and harder to manage.

What looked like freedom at the start of the day often became something else by the evening.

Fatigue arrived heavier than expected.

My legs were in pain far more than before.

Symptoms that lingered longer than they should.

A body that reminded me, firmly but not unkindly, that it still has limits.

What They Actually Give Me

It is easy to think of mobility aids as signs of limitation.

And in one sense, they are.

They exist because something is not working as it should.

But that is only half the story.

Because what I have been reminded of, again and again, is that they are not just symbols of what has been lost. They are also tools for what is still possible.

They extend the day.

They widen the world.

They give me access to moments that would otherwise be out of reach.

A walk becomes manageable.

An outing becomes sustainable.

A conversation becomes possible without the background noise of exhaustion.

They do not remove the illness. But they change the way I can live within it.

And that is no small thing.

The Part I Still Struggle With

If I’m honest, the difficulty has never been purely practical.

It’s not just about carrying things, setting them up, or deciding what to use.

It’s about visibility.

Mobility aids have a way of announcing themselves, and by extension, announcing you.

They draw attention.

People notice.

People look.

Sometimes they ask.

Sometimes they don’t, but you can feel the awareness shift in a room or on a street.

I have never been someone who enjoys being in the spotlight.

I prefer to blend in. To go about my day unnoticed. To move through the world without explanation or commentary.

Mobility aids make that harder.

They say something before you have a chance to.

They tell a story about you, whether you want them to or not.

And even when that story is accurate, even when it is necessary, it can still feel uncomfortable.

There is a part of me that resists that. Still.

Coming to Terms (Again)

What these past few weeks have shown me is something I probably already knew, but needed to relearn.

Improvement does not mean independence from everything that helped you get there.

Raising my baseline has changed things. It has given me more room, more capacity, more possibilities. I am grateful for that in ways that are difficult to fully express.

But it has not removed my dependence on the tools that support me.

And perhaps that is the shift I am learning to make.

Not seeing mobility aids as something to graduate from.

Not treating them as a temporary inconvenience to outgrow.

But recognising them as part of how I live now.

Possibly for the long term.

That is not the ending I would have chosen, but it is the reality I am learning to work with.

A Different Kind of Freedom

There is a version of freedom that says: I don’t need anything.

And there is another that says: I know what I need—and I use it without apology.

I am slowly, reluctantly, painfully moving towards the second.

Not perfectly. Not consistently. But more honestly than before.

Because the truth is, my mobility aids do not take freedom away from me.

They give it back.

Even if they do so in a way that feels visible. Even if they draw attention, I would rather avoid or remind me of things I would sometimes prefer to forget.

They still open doors that would otherwise remain closed.

And for now, that is enough.

Perhaps they always will be.

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.

Subscribe now

I look forward to holiday periods, when the schools are out, and my wife is too, as much of her work is in schools. It is a chance to spend time together and for the pace of life to slow a little, away from school runs and the relentless rhythm of daily tasks.

But it also comes with its own challenges.

During a normal working week, I have a set routine. I wake at the same time each day, write in the morning, and aim to complete whatever tasks I can in the afternoon. Evenings are usually for catching up with family and, importantly, rest.

Rest is not optional for me. It is part of how I function.

After each article or task, I have to stop and recover so that my energy levels do not drop too far. If they do, I pay for it the next day. The joy of post-exertional malaise.

Because of this, I have to plan my week carefully. I need to know how much energy I am using, and when. If I get it right, I have enough left for the things that bring me joy. If I get it wrong, I can do very little and end up on the sofa for hours, stuck in a crash and feeling guilty for what I have not done.

This is why holiday periods can feel both joyful and exhausting.

Everyone is at home. Plans are made. There are opportunities to spend time together with close family and extended family. All of that matters to me. It brings real joy.

At the same time, it becomes much harder to manage my energy. In truth, it becomes almost impossible.

What often follows is a kind of boom and bust cycle. I push a little too far one day, then feel the effects the next. I find myself constantly tired, and quietly calculating how today’s activity might shape tomorrow. Even that constant awareness is tiring in itself.

By the end of the break, I am usually grateful for the time we have had, hoping I have managed to be present without completely crashing.

There is some good news. Oxygen therapy has raised my baseline slightly, which means I can do a little more than before. The challenge now is learning where the new limits are without overstepping them.

If you are living with Long Covid, you may recognise this pattern. The unpredictability can be deeply frustrating. Even when you think you have found a balance, it can shift overnight.

That is part of the reason I have not recorded a podcast over the past couple of weeks. The fatigue has been heavier, and I have had to move into what I think of as survival mode. For me, that means getting through the day as steadily as I can and prioritising rest wherever possible.

The podcast will return soon. Thank you for your patience.

Whatever you are facing at the moment, please know you are not alone. And as always, if you need to reach out, you can email or message me.

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.

Subscribe now

Last week, I thought I might be getting my life back.

Not in a dramatic way. Nothing like waking up suddenly cured. But there was a shift during my second week of 24ft oxygen therapy. A lightness, a sense that something had moved. My brain felt clearer, my body more willing, and I was doing more without paying quite so much for it afterwards.

And quietly, perhaps more quietly than I realised, I began to celebrate.

I didn’t say it out loud, but somewhere underneath it all, I think I allowed myself to believe that this might be it. That I had turned a corner. That the oxygen therapy was the thing that had finally unlocked something. That this might be the beginning of the end.

This week has been different.

Not dramatically worse, not a crash, but a definite step back from that fragile sense of momentum. I’ve been more tired again—the chronic kind of tired that sits behind your eyes and slows everything down. The kind that makes even simple decisions feel heavier than they should.

The brain fog is still better than it was before all this started, which is huge. That improvement has held, and I’m grateful for that. It has been very helpful for my writing. And I’m still more mobile than I was, just not quite as much as last week—and that contrast is hard.

I’ve found myself asking the question that I imagine many people with long-term conditions ask over and over again: Is this working?

Is the oxygen therapy helping, or was last week just a good week? Is this progress, or just fluctuation dressed up as hope?

The honest answer is that I don’t yet know, at least not until my baseline becomes clearer again. And that uncertainty is, I think, one of the hardest parts of living with something like this.

When you’re dealing with an illness that follows a clear path, there’s actually a strange comfort in it. You know what stage you’re in, you know what comes next, and you know roughly what “better” is supposed to look like.

But long Covid doesn’t work like that.

It moves in increments and fragments, in what feel like ‘almosts’. You get a glimpse of something better, and then it shifts again. Not always backwards, but frustratingly not cleanly forwards either.

If I’m honest, the biggest challenge this week hasn’t been the physical symptoms. It’s been the mental adjustment.

Last week lifted me and, if I’m being honest, filled me with more hope than was realistic. This week has required me to steady myself again, because hope, when it rises quickly, can be disorientating when it settles. You don’t just lose energy—you lose expectation, and that can be harder to process.

I can see now why chronic illness and low mood so often sit side by side. Not because people are weak or negative, but because this constant recalibration takes its toll.

You are always adjusting what you can do, what you expect, and what you allow yourself to hope for. And if you’re not careful, that quiet erosion can begin to wear you down.

I’ve had to remind myself of something this week—something I knew already, but clearly needed to learn again.

Improvement, if it comes, will not arrive all at once. It will come slowly, in small and sometimes almost unnoticeable shifts over time. And those shifts won’t be linear. There will be better days and heavier days, weeks that feel like progress and weeks that feel like a pause.

That doesn’t mean nothing is happening. It just means this is how it works.

So I’m trying to reframe things, not as “last week was success and this week is failure”, but as part of a longer process that I can’t yet fully see.

The brain fog improving still matters. The increased mobility still matters. Even if they fluctuate, they are not nothing. They are signs, just not guarantees.

I’m continuing with the oxygen therapy, and I’m also taking antihistamines again, which have helped with fatigue in the past. Whether that’s coincidence or causation, I honestly don’t know, but when you’re navigating something like this, you pay attention to anything that seems to help, even slightly.

And yes, I’ve managed to sort all of this without actually speaking to a doctor, which probably says something about the strange, self-directed world many of us with long Covid end up living in.

You become your own researcher, your own trial-and-error experiment, and your own cautious optimist.

But perhaps the most important work isn’t physical at all. It’s learning how to hold the tension: to allow hope without letting it run too far ahead, and to acknowledge setbacks without letting them define the whole story.

Because the truth is, something is happening—even if it’s slower than I want, messier than I expected, and refuses to follow a neat narrative arc.

This week hasn’t taken everything away. It has just reminded me that recovery, if it comes, will not be simple.

And perhaps that’s the real shift. Not the physical improvement, but the understanding that I need to learn to live with uncertainty, not just wait for it to disappear.

If you’re walking a similar path, you’ll recognise this rhythm—the lift, the dip, and the quiet question of what now?

And maybe that’s where we meet. Not in certainty, but in persistence.

I’m still here, still trying things, still paying attention, still hoping—just a little more carefully this time.

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.

Subscribe now

When you live with a long-term condition like Long Covid, progress rarely arrives with an announcement.

There are no clear turning points.

No dramatic “I’m better now” moments.

Most of the time, change happens incrementally, so quietly that you can miss it entirely. That is exactly what happened to me recently.

The Questions I Had to Answer Again

As part of my oxygen therapy programme, I recently had to complete a set of assessment questions again. These are the same questions they ask when you first start treatment. The idea is that you can see if the therapy is working, and how.

They cover things like:

• How far can you comfortably walk?

• How severe is your fatigue?

• How is your mental health?

• How much does your energy fluctuate during the day?

At the start of the programme, I answered them honestly, but also a little automatically. When you have been unwell for a long time, it is easy to lose track of what “normal” used to look like, and you become much more attuned to your body.

Long Covid slowly redraws the map of your life.

The boundaries shrink.

The expectations lower.

You adapt.

So when I sat down to answer the questions again this week, something unexpected happened.

My answers were different.

A Subtle Shift

It wasn’t dramatic. I am not suddenly running marathons or going to the gym. But when I compared my answers with the ones from the beginning of the programme, there was a clear shift.

My first instinct was to think that it was wrong, but the more I thought about it, the more I realised.

Walking has been slightly easier. I have not needed my stick as much, and my posture has begun to change.

Energy levels were slightly more stable. I have been having longer periods of feeling more ‘present’.

My brain fog has dramatically improved. The fuzzy brain usually only visits me again after a day or two of treatment.

My mental health scores were noticeably better.

In short, my baseline had improved, and the strange thing was that I hadn't fully noticed it.

The change had crept up slowly, day by day, like the tide coming in.

The Problem With Living Day to Day

When you live with Long Covid, you tend to measure life in very short windows.

“How do I feel today?”

“Can I get through this afternoon?”

“Will tomorrow be a crash day?”

It becomes a daily survival rhythm rather than a long-term perspective. The difficulty with that approach is that slow improvements can become invisible. If something improves by one percent each week, you probably won’t notice. But over several months, that one percent becomes significant.

Without some kind of record, it is very easy to overlook.

The Case for Tracking Symptoms

Since I developed Long Covid, I never tracked my symptoms in any structured way; I simply lived with them. Looking back, that now seems slightly surprising.

We track so many things in modern life.

Steps.
Sleep.
Calories.
Heart rate.

But many of us with chronic illness simply endure our symptoms without recording them.

I have flirted with tracking devices, used flashy journals on my iPad, and even signed up for a few apps with good intentions, but it soon fizzled out. I think it is because it is so easy to overlook when you are managing energy levels day to day.

Now that I have started paying closer attention, I can see how useful it is. It turns vague impressions into something clearer.

Something measurable.

Something you can actually look back on.

A Simple Tool That Helps

One surprisingly helpful tool has been the default journaling app on my iPhone and iPad. They are not flashy or very refined at the moment, but they are simple, quick, and always available.

Each day, I can jot down things like:

• Energy levels

• Mood

• Walking ability

• Any crashes or flare-ups

• What treatments I have used

Crucially, it takes less than a minute. But over time, it builds a record that becomes incredibly valuable.

Because memory is unreliable when you are tired, and Long Covid fatigue does not exactly sharpen your recall.

A written record does.

Seeing the Bigger Picture

What struck me most when I completed the clinic assessment was the sense of perspective it gave me.

For months, I have been living with the daily ups and downs.

Some days better.

Some days worse.

Some days confusingly both.

But stepping back allowed me to see something different.

A trend.

Not a straight line.

But a gentle upward curve.

That realisation alone was surprisingly encouraging. Because when you are inside the struggle, it can feel like nothing is changing.

Oxygen Therapy and the Baseline Shift

Since starting oxygen therapy, something has clearly shifted in my baseline.

Again, I want to be careful not to exaggerate this.

Recovery from Long Covid rarely follows a clean, simple path. But I cannot deny that there is a difference.

My capacity for walking is a little better.

My energy envelope seems slightly wider.

My mental health has improved too, which may partly be the result of feeling that something is helping.

Hope itself is a powerful medicine.

The Next Step in the Journey

What makes me especially hopeful is that I have just begun my oxygen journey. The next stage of my therapy will increase the pressure level to 24 ft pressurisation. That is the equivalent pressure used in hyperbaric oxygen therapy to simulate being about 24 feet underwater.

It allows the body to absorb higher levels of oxygen into the bloodstream and tissues, and many people report further improvements at this stage.

Of course, everyone’s response is different.

Long Covid has taught me to hold optimism carefully, without making promises to myself that my body may not keep.

But it will be interesting to see what happens next. And now that I am tracking things more closely, I should be able to notice those changes more clearly.

The Value of Noticing Small Wins

One psychological challenge of Long Covid is that improvements are often incremental.

They arrive quietly.

They build slowly.

And if you are not looking carefully, you can miss them.

But those small gains matter. They accumulate. They widen the space of what is possible.

One day you realise you can walk a little further.

Another day you realise your brain fog has lifted slightly.

Another day you notice that your mood has stabilised.

Each improvement is small.

But together they begin to change the landscape.

A Lesson I Wish I Had Learned Earlier

If I could go back to the beginning of my Long Covid journey, I would start tracking things much sooner.

Not obsessively.

But deliberately.

Because whilst the human mind is very good at remembering bad days. It is less good at remembering gradual progress. Keeping a simple record changes that. It turns recovery into something visible.

Something you can see unfolding over time.

The Quiet Encouragement of Evidence

The most encouraging moment for me recently was not a dramatic breakthrough.

It was simply answering those assessment questions again.

The evidence was right there in front of me.

Things had shifted.

Not completely.

Not perfectly.

But meaningfully.

And that realisation brought a surprising sense of encouragement. Because sometimes the most important progress is the progress we almost fail to notice.

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.

Subscribe now

It is a ‘barmy’ fifteen degrees in the UK as I write this. Bright sun. Blue sky. The kind of day that quietly lifts your mood without asking permission.

I cannot currently see any of it, though.

I am sitting inside an oxygen chamber, mask in place, listening to the gentle hum of compressed air. This is my fourth session. This time, there has been a week and a half between treatments.

During that gap, the brain fog returned.

The fatigue followed.

Not dramatically, just stubbornly.

The warmer weather has lifted my spirit, but strangely, it has made my symptoms feel heavier. My limbs feel weighted. My energy has dipped again. Mentally, I feel brighter. Physically, I feel slower.

It is an odd contradiction.

Sunlight improves mental health for many of us. There is something about warm light on your face that reminds you the world is still turning. Yet, my body seems unconvinced. It moves at its own pace, indifferent to the season.

Perhaps there is a medical explanation. Temperature regulation. Autonomic dysfunction. Circulation changes. I am sure there is an official name for it somewhere.

But knowing the name does not always make the heaviness easier.

Between sessions, both the brain fog and energy levels slid back to their familiar baseline. I have had moments recently where tiredness has felt overwhelming again. The sort of fatigue that presses down rather than merely slows you.

Five years in, this rhythm is not new or any worse.

Chronic illness reshapes your sense of normal. What once felt like a crisis slowly becomes the backdrop of life. The body you keep expecting to “return” does not return. Instead, you adapt. You adjust. You live inside a new baseline.

On Monday, I recorded a podcast episode about the long-term effects of living with chronic illness. Not just physically, but psychologically. What it does to motivation. Identity. Patience. Hope.

Nearly five years of recalibration.

And, here I am again, hoping.

I have good reason for my newed hope. The previous oxygen sessions yielded noticeable results. After each treatment, the brain fog lifted. Not metaphorically or a bit. It genuinely cleared. My energy returned for a while. The world, which normally seems kind of fuzzy, sharpened at the edges.

Last time, the effect lasted a little while before fading. That is why I am sitting here today, quietly hopeful that this session might do the same.

Maybe even more.

There is still the possibility that the effects are cumulative. That something subtle is building beneath the surface. That each treatment nudges the baseline upwards by a fraction.

I find myself wondering whether the temporary clarity allows me to do slightly more, and if doing slightly more creates its own momentum. A knock-on effect. I am sure there is a clinical term for that, too.

All I know is that small windows of energy are a gift.

If oxygen therapy allows me to organise one more practical thing at home. To adjust one more energy drain. To create one more system that protects tomorrow’s strength. That matters. With an unpredictable illness, the predictability of knowing when a burst of energy might occur feels wonderful.

Recently, something as simple as getting a small table positioned at sitting height beside the sofa has made a difference. Before that, I was constantly stretching, twisting, and reaching. It sounds trivial until you live inside a body where small movements cost more than they should.

These are not dramatic victories.

They are survival strategies that work.

Warm weather also has a way of reminding you what you are missing. Everyone else seems to accelerate. Gardens are tidied. Walks are longer. Evenings stretch out.

Meanwhile, your body negotiates.

But the sun also reminds me that joy and limitation can exist together. My mood genuinely is better today. There is lightness in my thoughts even if there is heaviness in my limbs.

Both are true.

Living with long Covid often means holding two realities at once. Improvement and setback. Gratitude and frustration. Hope and weariness.

Perhaps this is what long-term illness slowly teaches you: you can feel emotionally lifted while physically slower. You can be encouraged and tired in the same hour.

The sun is shining outside this chamber.

Inside, oxygen is flowing steadily.

And somewhere between the two, I am learning patience again.

Five years in, the new norm still shifts at the edges. Perhaps my baseline will change. Perhaps oxygen therapy will move the dial in ways that are not immediately obvious.

As always, I would love to hear how you are doing. Whether the sun energises you or drains you. Whether you have been able to leave the house today or are reading this from bed.

Wherever you are, you are not alone.

We are all here alongside one another, navigating this strange in-between space of light and limitation.

And sometimes, that shared understanding is its own kind of oxygen.

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.

Subscribe now

Three sessions in.

After my third treatment at Suffolk Oxygen Centre, the brain fog lifted. Not metaphorically. Not in a poetic, I-feel-a-bit-better sort of way. It genuinely cleared, like a mist rolling back from a field.

Last time it lifted too, but only briefly. By the following day, the familiar heaviness had crept back in. The fog descended, and the fatigue followed close behind, as it so often does. Long Covid has a way of giving you hope in the morning and humbling you by tea time.

So I am holding this lightly.

And yet, I cannot ignore what is happening.

There is, in general, a little more energy than before. Not the old energy. Not the pre-COVID “I’ll just get on with it” energy. But something steadier. Something that feels like a small upward nudge rather than a dramatic swing. It feels as though my baseline might be shifting. I find myself wondering whether the benefits are cumulative. There is no doubt that each session gives me short-term clarity. But am I quietly building something beneath the surface?

Time will tell.

For now, it remains a fascinating experiment.

Hyperbaric oxygen therapy is a strange thing to explain. You climb into a chamber, the pressure increases, and you breathe oxygen through a large mask that, at first, feels very artificial. The breathing has a different quality to it. You are aware of each inhale in a way that feels engineered rather than natural.

In the first session, I was self-conscious about the mask. It is not subtle. It covers much of your face and hisses gently as oxygen flows through. There is no elegant way to wear it.

But something has shifted there too.

I am more confident now. More relaxed. The novelty has worn off, replaced by familiarity. I know what to expect when the pressure changes. I know how my ears will pop. I know the rhythm of the session. So instead of enduring it, I settle into it.

I even take my laptop in.

That still makes me smile.

There I am, zipped into a pressurised chamber, wearing a substantial oxygen mask, writing away as if I am in a quiet café. The time flies. Words come. Ideas form. There is something strangely productive about being enclosed and slightly removed from the world. No errands or interruptions, just breathing and typing.

If nothing else, it is the most unusual writing studio I have ever had.

Another unexpected gift has been the people.

Our online Long Covid community is extraordinary. It has been a lifeline over the past months and years. Shared stories, frustrations, and small victories. It is a space where you do not have to explain why you cancelled something again or why a good day can be followed by three difficult ones.

Yet meeting others in person adds a different layer.

Inside the chamber and in the waiting area, I have met people with my condition and many others besides. Different diagnoses. Different journeys. But the same quiet resilience. The same calculation of energy and cautious, unsaid hope.

There is something grounding about sitting opposite someone who understands without a lengthy preface. You swap notes. You compare timelines and laugh about the absurdities. You speak honestly about the hard bits.

Illness can be isolating. Treatment, unexpectedly, has been communal.

Today, as I was leaving the centre, it struck me that the treatment will not last forever. The course of sessions will eventually come to an end. Sadly, at some point, I will no longer make regular trips to Suffolk Oxygen Centre. When it happens, I will miss the friendly staff who have quietly cheered me on. I will also miss the small conversations before and after sessions. I will even, I suspect, miss the ritual of putting on the big oxygen mask and settling in.

That surprised me.

When you live with a long-term condition, so much feels uncertain. You measure progress in tiny increments. You try not to over-interpret good days or catastrophise the difficult ones. You become wary of declaring victory too soon.

So I am not declaring anything, but I am observing.

The fog lifted again.

There is, perhaps, a little more energy overall.

The sessions feel less intimidating and more familiar.

And I find myself quietly hopeful.

Hope, for those of us living with Long Covid, is not naïve optimism. It is not pretending everything is fine. It is the willingness to notice small changes and to keep going anyway. It is making notes and learning to listen to your body. It is also allowing yourself to imagine that improvement might be possible, even if it comes slowly.

For now, I am taking each day as it comes.

I am writing in the chamber.

I am talking with others who understand.

I am recording honestly what happens next.

I will continue to share updates as the treatments progress. Not a polished success story, but a truthful account. If it helps others considering oxygen therapy, that would be a gift. If it simply documents the winding path of recovery, that is worthwhile too.

I am off to enjoy this brief period of energy, knowing that tomorrow may feel different.

Wherever you are today, remember: you are not alone.

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.

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Yesterday, I found myself sitting inside what looks, quite convincingly, like a deep-sea diving chamber.

It’s small, round, and surprisingly human in scale. There are oxygen masks clipped neatly to the sides, space for around four people, and just enough room to sit comfortably without feeling cramped. As the big door is shut and the session begins, the sound of pressurised air fills the chamber. A steady whooshing that reminds you very quickly that something unusual is happening.

This was my first experience of high-dose oxygen therapy.

Going Down to 16 Feet

Because it was my first session, we only went to the equivalent of 16 feet in depth. I was told there’s no single “ideal” depth, sessions can go up to around 32 feet, and it’s a process of gradually finding what works for each person.

Nothing is rushed.

Beforehand, everything is carefully explained: what to expect, which sensations are normal, and what to do if you feel uncomfortable. At every step of the way, Mark and his staff were kind and considerate to me and my fellow first-time “divers”. That mattered more to me than I expected.

When the pressure starts to change, your ears pop, much like ascending in an aeroplane, but it was gentler than I’d anticipated, and we were warned at every stage. No surprises.

The Mask and the Moment of Doubt

Once the oxygen mask goes on, I’ll be honest, it feels strange.

Looks-wise, there’s something slightly Top Gun about it, but without the cool factor. The mask is big, heavy, and unmistakably industrial. I’m used to wearing a CPAP mask every night, but this felt different. Breathing takes a little more effort at first, and there’s a moment where your body thinks, I’m not sure about this.

Then, slowly, something shifts.

As the minutes pass, your breathing adjusts. Your body acclimatises to the pressure, the oxygen, the unfamiliar rhythm. I noticed my shoulders dropping. My jaw unclenched. The initial alertness gave way to something calmer.

I felt fine. Slightly claustrophobic, perhaps, but not distressed. More aware than anxious.

Feeling Safe Matters More Than You Think

One thing that made a huge difference was the personal approach.

Mark, the manager, was in the chamber with us, guiding the newbies, keeping things light, and reassuring without being overbearing. His staff were always outside and checked on us every fifteen minutes via an intercom. Ever the writer, I even tried fishing for a few gruesome stories (as you do), but sadly, there weren’t any. Reassuringly dull, in the best possible way.

At no point did I feel unsafe.

That might sound like a small thing, but when you live with Long Covid, your body already feels unpredictable. You notice when you’re being properly looked after.

Afterwards: A Subtle Shift

When the session ended, I felt light-headed, but in a pleasant way. Clear rather than spaced out. Before I’d even left, I’d booked my next appointment.

The man sitting next to me had gone in looking pale and washed out. When we came out, the colour had returned to his face so noticeably that it was hard to ignore. It wasn’t dramatic, just a lot better. And sometimes, that’s enough to feel like a win.

One Day Later

I’m writing this the day after my first session, and I want to be cautious.

I’ve tried many things over the past few years to improve my Long Covid symptoms. Hope is a renewable resource, but it’s also one you learn to ration. I don’t want to get carried away.

That said…

I had a fantastic night’s sleep. Not just longer, but deeper. My watch recorded over an hour of deep sleep, something I haven’t managed for a very long time. Quantity and quality.

Yesterday evening and this morning, I feel unusually sharp. My brain fog, which is often my most stubborn symptom, has lifted significantly. Not vanished, but noticeably improved. Enough that I’m aware of the difference.

Is it a placebo? Is it a coincidence? Is it a short-term effect?

Honestly, I don’t know yet.

What I do know is that today feels different, and I’m journaling and paying close attention.

Cautious Optimism (The Only Kind I Trust)

I’m looking ahead to my next session on Friday, curious to see whether these effects wear off in the meantime or whether something begins to build. I’ll be documenting this properly and honestly, not just the good days, but the flat ones too.

If you live with chronic illness, you’ll understand this approach: hopeful, but grounded. Interested, but sceptical. Open, but not naïve.

That’s where I am right now.

A Word of Thanks

I want to thank Suffolk Oxygen Therapy, a company I didn’t even know existed until recently.

This is only the beginning. I’m not drawing conclusions yet.

But for the first time in a while, I’m cautiously and deliberately paying attention to the possibility that something might help.

And that, in itself, feels like a small step forward.

Watch this space for further updates.

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.

Subscribe now

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.

Subscribe now

I am sitting in the doctor’s surgery.

“What can I do for you?”

I swallow, hesitant about how much to share. I have had experience with doctors who hate the mere mention of Long Covid. I never get to see the same doctor; in fact, an ‘in-person’ appointment feels like a luxury.

I begin.

“I suffer from chronic fatigue that was brought about by Covid”

Tumbleweed. No response. Is this good, or is the doctor indifferent? I hesitate before continuing.

“The fatigue has been worse lately, so I wondered if there is anything else I can do that might help”.

That’s it, I have asked. What follows is a four-minute exploration of all things obvious relating to fatigue.

Am I getting enough sleep?

Am I eating enough?

Big ticket question: How is my mental health? (Subtext, it’s all in your head).

I answer these as truthfully as I can and wait for the conclusion.

“I think we need to do your bloods again, just to make sure nothing has changed”.

I squirm in my seat. I had bloods done less than a year ago, and they were all clear, whilst the fatigue was present. This feels like we are just reaching for an action, but I can't say that.

“ I did have some done not long ago”, I offer apologetically, as if I am questioning the doctor's authority, “They were clear then, and I have had this fatigue since 2021”.

That’s done it. The doctor looks at me, clearly pressed for time.

A tense few seconds.

“Well, it can’t hurt to do them again. Let’s get them done, and then you can come back and see me afterwards”

The thing is, I won’t see this doctor. My surgery is so overworked and busy that we get any doctor who can possibly fit in a four-minute appointment. He knows it, I know it. We both know I am being fobbed off, a metaphorical tin can that has been kicked down the road again.

“Thanks very much,” I say, resigned and walk out.

I don’t blame the doctors, but the system here in the UK is broken. The response to Long Covid has not advanced or improved since I contracted it in 2021. Nothing has changed, save for the increasingly dismissive nature of the benefits system.

How are your experiences getting help with Long Covid symptoms? Let me know in the comments below, and let’s reassure each other that we are not alone.

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.

Subscribe now

I’ve been grieving recently for a version of myself that I always assumed would remain constant. Not the dramatic things. Not the big headline moments. The smaller ones. The spontaneous ones. The me who could just do things without calculating the cost first. The me who was lighter (mentally and physically), funnier, and more available at short notice. The me who didn’t need to negotiate with his body before saying yes.

Lately, I’ve been grieving something else too: the dad I thought I’d be. Not because I don’t love my children (I do, deeply), but because some days I don’t have the energy to be as active in their lives as I’d like. That kind of grief doesn’t come with a clear moment of loss. It doesn’t arrive with a single before-and-after, no obvious “this is where everything changed” marker you can point to and say, that was the day.

It just shows up again and again on ordinary afternoons.

It shows up in the things I could have done but couldn’t, to make their lives easier. It shows up in the quiet probing every parent does with their teenagers, trying to make sure everything is fine in their world, even when they pretend it isn’t a big deal. It shows up in the background awareness that all of this used to be effortless, and these days, I’m often struggling to keep up.

A life that used to be effortless

Before Long Covid, spontaneity was one of my favourite ways to be alive. I didn’t always plan things properly. I didn’t (mostly) always do things “wisely”. But I lived with a kind of freedom that I didn’t even recognise as freedom at the time, because I assumed it would always be there.

I could decide at the last minute to go somewhere. I could take the kids out without needing to consider how many hours it would cost me afterwards. I could arrange, last minute, to take my lovely wife to the theatre on a cheeky Tuesday evening. I could meet someone, do something, say yes, stay a little longer, push a little harder, and then just go home and recover naturally.

I was the person who would pride myself on being able to lift the mood in a room, raise the energy (ironically). I didn’t realise how much of my joy was wrapped up in that version of me. Not because I needed constant excitement, but because I didn’t have to treat life like an ongoing negotiation. I could just live it.

So yes, I am feeling sorry for myself and what I have lost. I long to live without treating every decision like a trade.

Long Covid didn’t just slow my body down. It has edited my personality. Not because I have become a different person on purpose, but because the boundaries of what I can do are constantly shaping who I am allowed to be.

Am I becoming a “better” person? Sure.

There are benefits to taking the slower, more practical route. But sometimes, like the last couple of days, I miss the old me.

The constant negotiation no one sees

One of the strangest things about chronic illness is that so much of it looks like nothing. From the outside, it can appear like rest, like choosing the sofa, like suddenly being emotionally unavailable. But on the inside, it’s a constant negotiation, and you wake up doing the maths before you’ve even properly opened your eyes.

How much energy do I have today? How much will this cost? How long will the payback last? What will I lose tomorrow if I do this today?

It isn’t that I don’t want to. It’s that my body keeps billing me for things that used to be free. That’s hard to explain without sounding like I'm being dramatic, because “I can’t today” sounds like a preference, but isn’t. Sometimes it’s a warning, and sometimes it’s the moment where you realise your body has limits you can’t fight without consequences.

The grief of a smaller life

There are losses that people understand easily, such as losing their job. Losing someone you love. A sudden trauma that changes everything. But the grief of Long Covid is quieter than that. It’s the loss of your pace, your reliability, your confidence, your ease. It’s the loss of being able to trust your own body to show up when you need it most.

It’s the grief of seeing your life shrink, and having no idea if it will ever expand again. The hardest part is that it isn’t just your body that changes. It’s your relationship with yourself.

Because you remember who you used to be. You remember what it felt like to decide something and then just do it. You remember what it felt like to be the one who coped, the one who didn’t need help, the one who could keep going. So when you can’t do those things anymore, the loss isn’t only physical.

It’s personal.

The dad I thought I’d be

This is the grief that catches me when I’m not expecting it. Parenting is physical, even with teenagers. It’s movement, noise, constant small needs, and those strange moments where something huge has to be talked about right now — usually whilst someone is half-playing a casual game.

With teenagers, the energy isn’t about chasing them around a park. It’s about being available at the right moment, staying calm when emotions flare, asking the next question, and having the capacity to hold what they tell you without crumbling afterwards.

There are days I watch my children moving at full speed, and I feel two things at once: gratitude that they’re well, and grief that I can’t always join them. I want to be the dad who is emotionally and physically present as much as I can be — the dad who says yes without hesitation. Instead, I’m sometimes the dad who has to sit down halfway through, not because I’ve stopped loving them, but because my body has stopped cooperating.

That comes with guilt attached. Not because anyone is telling me I’m failing, but because I can feel the gap between what I want to give and what I’m able to give. When I miss a moment, it can feel permanent.

When your love has to change shape

This is where I’ve had to learn something that doesn’t come naturally to me: that love isn’t only expressed through energy. Love is not just the dad who runs around with a football. It’s also the dad who notices, the dad who listens, the dad who stays.

The truth is, I might not always be able to be the most active parent, but I can still be a present one. I can still read, still talk, still laugh with them, still create small rituals that don’t cost too much. Sometimes it’s not about doing more. It’s about being there.

I don’t say that to make it sound neat or to force a silver lining, because it isn’t neat, and sometimes it doesn’t feel like enough. But it is real, and it counts.

There is a kind of bravery in rest that no one celebrates. Rest doesn’t look like strength. It doesn’t look like resilience. It doesn’t look like winning. It just looks like stopping. But in chronic illness, stopping is sometimes the most responsible thing you can do.

I still miss the old me. I miss the spontaneity, the fun, the ease, and being able to say yes without thinking. But I’m learning that my children don’t only need my energy.

They need my presence.

And as limited as I feel sometimes, I am still here.

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.

Yesterday, I had a disability benefit assessment via video link.

It lasted over an hour. An hour that felt far longer once fatigue, brain fog, and the quiet pressure of being evaluated all kicked in at once.

The questions came thick and fast. Often the same question, asked again and again, just phrased slightly differently each time. I understand the theory behind this. It’s meant to test consistency, spot contradictions, and ensure nothing slips through the cracks.

But when your brain is foggy, when words don’t line up neatly anymore, when concentration drains like a faulty battery, it doesn’t feel like a neutral process. It felt very much like a trap that I was not equipped to deal with.

I found myself second-guessing everything I said. Not because I was lying, but because I was terrified of saying the wrong thing. I could sense the unspoken assumption hanging in the air: Are you exaggerating? Are you sure? Are you really that unwell? Do you need to push yourself more?

That’s one of the cruellest parts of living with a chronic illness. You don’t just have to manage the illness itself. You also have to constantly validate it to other people.

And validation, apparently, requires a lot of stamina.

By the end of the assessment, I was so exhausted that I couldn’t complete the physical part of it. My body simply shut down the conversation. No drama. No heroics. Just that familiar internal click that says, That’s enough now. So I had to explain that I did not have the energy for any more.

I already know how that will look on paper.

“Unable” becomes “unwilling.”

“Exhausted” becomes “uncooperative.”

“Not today” becomes “not at all.”

Today is a recovery day. One of those quiet, flattened days where everything feels heavier than it should and the only real plan is rest. I’m still exhausted, still foggy, still carrying the dread of the letter that will eventually arrive with a verdict on my worthiness.

If the funding is removed, it won’t just be inconvenient; it will also be detrimental. It will be frightening. It will affect the whole family. If I am denied, it won’t magically make me more employable, more productive, or more resilient. I don’t have the option of working right now, no matter how much I might wish I did.

There’s a persistent myth that support breeds dependency, when in reality it often just makes survival possible.

What these assessments reveal, more than anything, is how deeply our systems struggle with illnesses they can’t see. Pain without proof. Fatigue without spectacle. Cognitive fog that doesn’t show up on a scan. If you can walk into a room, speak in sentences, and hold it together for an hour, the assumption is that you must be fine.

But chronic illness lives in the aftermath. In the days after. Following the ‘performance’, the crash occurs. There’s no cast, no scar, no visible sign; there’s an unspoken suspicion that maybe it isn’t that bad.

Even feeling sorry for yourself becomes socially unacceptable after a while. Which is unfortunate, because today I am sneezing again, after a month-long cold, and I feel sorry for myself. Seriously, just how compromised is our immune system in the winter?!

So if today finds you tired, frustrated, fed up, or quietly angry at how much explaining you have to do just to be believed, you’re not alone.

However you are doing today, I hope you can forget, even briefly, the noise that surrounds chronic illness. The pressure to justify yourself. The need to appear credible, productive, or brave.

You don’t owe anyone a performance.

Rest is not failure.

Needing help is not a weakness.

And being exhausted by all of this is a completely reasonable response.

Be gentle with yourself today.

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.

Subscribe now

A quiet New Year reflection on hope, limits, and living without waiting.

Five years into long Covid, this episode asks a simple question:

What are you hoping for in 2026?

Thank you to everyone who listens and subscribes — your support keeps this possible.