How my Long COVID journey began

My Long COVID journey did not start with drama or urgency. It began quietly, in 2021, here in the UK, in a way that will sound familiar to many.

After what seemed like a mild case of COVID, I assumed I was recovering. Instead, my body began to change in ways I could not explain.

At first it was breathlessness. I could not read my child a bedtime story or sing a lullaby without struggling for air. Climbing the stairs felt like exertion. Leaving the house stopped being part of normal life and became something reserved for emergencies, hospital visits, and appointments.

Then came chest pain. My heart rate would spike to 180 beats per minute while I was standing still, as if I were sprinting without moving. I genuinely wondered whether my smartwatch was broken. Soon after followed crushing fatigue, dizziness, and a growing list of unfamiliar symptoms that did not fit neatly into any explanation I had been given before.

It felt as though my body had stopped following the rules I had always relied on. Rest did not fix it. Pushing through made it worse. And nothing about it made sense.

Diagnosis, relief, and a different kind of uncertainty

By 2022, after months of questioning myself and trying to function through symptoms, I was formally diagnosed with Long COVID.

Having a name helped. It brought relief, validation, and a sense that I was not imagining any of this. But it also opened the door to a different kind of uncertainty.

This was not anxiety. It was not stress. It was not “all in my head”.

My symptoms were physical and systemic. Alongside fatigue and breathlessness, I developed signs of autonomic dysfunction, including a persistently elevated resting heart rate and evidence of organ involvement. Some symptoms gradually became more manageable. Others remained unpredictable and stubbornly resistant to improvement.

Recovery, I learned quickly, is not a straight line. It loops, stalls, retreats, and occasionally surprises you.

I am still navigating overlapping conditions, learning how to remain functional without crossing the invisible limits that trigger setbacks. This is not a sprint. It is a marathon I never trained for, with no clear finish line.

What you will find on this site

This blog focuses primarily on mild to moderate Long COVID, grounded in my own lived experience in the UK.

I am deeply aware that people with severe Long COVID face challenges far beyond what I can personally describe. While I cannot write from that perspective, I hope this space still offers understanding, validation, and solidarity.

Here you will find writing about:

Managing Long COVID symptoms such as fatigue, brain fog, breathlessness, heart rate instability, and dizziness
Living with pacing, energy limits, and the constant negotiation of daily life
Personal reflections on progress, setbacks, grief, humour, and the strange adaptations chronic illness demands
Honest accounts of navigating healthcare systems, appointments, and uncertainty
Thoughtful conversations about hope, acceptance, frustration, and balance

Everything shared here is rooted in lived experience and informed by current evidence where possible, without overstating what science does not yet know.

Why I write this blog

Long COVID dismantled many of the assumptions I held about health, recovery, and resilience.

Writing became a way to process what was happening, to slow things down cognitively, and to stay connected to others walking a similar path.

The aim is simple:

To make Long COVID visible in its everyday reality
To share practical insights that may help others feel more oriented
To offer empathy, clarity, and occasionally a bit of lightness

I am still living this experience myself. This blog is not written from the other side of recovery, but from inside the process. My hope is that it becomes a place where people feel less alone and more understood.

Gratitude along the way

Living with Long COVID has been one of the hardest experiences of my life. It has also revealed the importance of compassion, persistence, and community.

I am grateful to:

Researchers and clinicians working to deepen understanding of Long COVID
Advocacy and support organisations including Long COVID Support, Long COVID SOS, POTS UK, and Asthma and Lung UK
The ME CFS, Lyme, MCAS, autoimmune, HIV, and wider post viral communities who have long pushed for recognition and research
NHS specialists and private healthcare providers who supported me, even amid early uncertainty and dismissal
My mental health and coaching team, who recognised early on that this was a physical illness and encouraged me to keep seeking answers
My family and friends, for their patience, belief, and care

Stay connected

You are welcome to share your experience or get in touch. Every story matters.

New content is added as energy allows. If you are living with Long COVID, your energy is precious. I aim to keep writing clear, grounded, and accessible, especially for those navigating fatigue or brain fog.

Disclaimer

This site shares personal experiences and reflections, including those of guest contributors. I am not a medical professional.

The information provided here is not a substitute for professional medical advice. Please consult a qualified healthcare provider regarding diagnosis, treatment, or medical decisions.

No responsibility is assumed for actions taken based on the content of this site.