The Improvements I Nearly Missed With Long Covid
How tracking my symptoms during oxygen therapy revealed small but meaningful improvements I hadn’t even noticed.
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.
Paul, could you tell me what wheelchairs you use. The one I have is very difficult to steer and doesn’t cope well with cambers. I would be grateful to know how you find yours and would you recommend one. Thanks again for your podcasts and emails. Frances