5 Things I Wish I Knew When I Got Long COVID

It’s been over a year since I had COVID and well over six months since I was completely incapacitated by my long COVID symptoms. It has been the most challenging period of my life. Slowly but surely, I am getting better at managing my symptoms. Photo by Alex Ivashenko on Unsplash

5 Things I Wish I Knew When I Got Long COVID


It’s been over a year since I had COVID and well over six months since I was completely incapacitated by my long COVID symptoms. It has been by far the most challenging period of my life and I’ve learnt so much about myself. Though I’m no closer to understanding this bizarre condition, slowly but surely, I am getting better at managing my symptoms.

The Early Days

The first three months were a complete whirlwind, as I not only came to terms with my condition, but searched for a diagnosis. On good days, I would convince myself I was better, minimising my experience to a small blip. I was in a state of complete denial. Little by little I tried to piece together what was happening to me. I would obsessively take notes of my symptoms, the changes day-to-day, the new ones appearing week-to-week. I spent many nights frantically scouring the internet for answers.

After five days of being bed bound, I'd suddenly convince myself that I’d imagined the whole thing. My inner monologue taunted me, with “it’s not that bad, get up, how can you be so lazy?” I’d get up quickly only to find that after ten minutes of walking my body had completely given way and was no longer my own.

My main symptoms were breathlessness, chest pains and fatigue. But on many days, I've also had migraines and nosebleeds. It often feels as if my body has been completely taken over by an external force, which seeks to take advantage of any weakness I might be exhibiting (lack of sleep, stress or anxiety).

When I got ill, there were no long COVID clinics, no long-reads in the Guardian about young people being sick for months. There were far too many hospitalisations for us to begin to understand the hidden story happening simultaneously, long COVID. At that time, I would spend hours hoping to find someone's story that resembled my own. So in the hope that I can help someone in the early days of their long COVID journey, I want to share five of the things that have been helping me to better cope with this tumultuous condition:

  1. Listen to Your Body by Pacing and Finding Your Baseline

I can now trace the first signs of long COVID to intense chest pains that lasted a few seconds at a time straight after I "recovered" from the virus. I also had a rash that made the skin on my back discolour. During this period, I carried on as normal, exercising a few times a week, working and socialising. Several months later, my symptoms took on an increased intensity, as I started to experience constant pain in my chest that after several days forced me to remain bedbound as any movement increased discomfort. After several trips to A&E to ward off the most serious possible ailments, I started to get a bit of respite from the pain. Hoping that was an isolated incident, I then carried on as normal.

For so long I kept trying to push through my symptoms. I held myself to the same expectations as before I got ill, convincing myself that if I couldn't push through, it was because I was weak. It took me six months to realise that I needed to take a completely different approach. Enter pacing: the aim to maintain a fairly even level of activity every day. Sound simple?

Pacing is based on three core principles:

  1. Take frequent, short breaks
  2. Gradually increase the amount you do
  3. Break-up tasks into smaller bits

The first step to start with pacing, is to find your baseline. Your baseline is the amount of activity you can do without worsening your symptoms and without doing too little. It's a fine line and it has taken me months to find mine after a lot of trial and error. Everyone's baseline will be different.

2. There is No Miracle Cure, But Ways of Managing the Symptoms

So much of my anxiety in the early months, were linked to me spending hours searching for a cure. I'd find an array of vitamins, minerals and a new diet that had helped people. After weeks of testing this out, my heart would sink when I didn't feel like my old self. Not even close.

I didn't realise that although there are lifestyle changes that can help ease symptoms, there is no "cure" and it should be treated more like a chronic condition. Healthcare professionals are in the early-stages of researching long COVID. I had to change my mindset from finding a cure to managing my symptoms. Since then it's become a lot easier to get by.

3. You're Not Alone

Getting ill after seeing many people my age and much older recover, was very isolating. Finding support groups online has made me feel less alone. Potentially up to 1 million people in the UK have long COVID and there are such a diverse range of symptoms. I've been part of Body Politic since the end of 2020 and it's enabled me to find more stories like mine, which has been a crucial part of my recovery.

4. Don't Give the Symptoms Too Much Power

After many months of denial and then feeling pretty hopeless, I realised that my state of mind had such a huge impact on the way I perceived my symptoms. The more attention, you pay to your symptoms, the more they thrive. Obviously it's not helpful to push through and pretend they don't exist there, but there is a balance to strike.

Whenever I could sense a bad flare up coming, I would instantly cancel all plans, go to bed and despair. Now I try to acknowledge the worsening of symptoms and not change my behaviour too much. I decrease my activities by a maximum of 50% and if I need to change plans, I do it on the day. There's nothing worse than anticipating how bad you're going to feel because when the bad spell comes you will feel even worse.

5. Your Pain is Real Even If No One Can See It

One of the most challenging parts about long COVID, is that in many cases, these are self-reporting symptoms. I've done countless blood tests, X-rays, ECGs, CT scans and am about to do an echocardiogram and lung function test. Even though I have been experiencing debilitating symptoms for over eight months, very little of use be seen from any of these tests.

When I received my CT scan results and found out that both my heart and lungs were healthy, I felt a deep sense of dread. I asked the doctor, "but why am I so ill when there's nothing wrong with me?" He helpfully replied that what I was facing was indeed very serious, but there were, as of yet no real answers for what caused long COVID.

It's a very disconcerting feeling to not know why you're ill and have so few answers. In many cases, long COVID is an autoimmune response to the virus, where your body attacks you instead of the virus. This makes it that much more difficult to treat.

Resources

  • 📺 To find out more about long COVID, check out Long COVID: an unfolding story with Professor Brian Cox from The Royal Society (a great webinar that helped me understand it a bit better)
  • 📰 To find out even more about long COVID, check out Researchers are closing in on long COVID (bit of a longer read, but very thorough)
  • 📚 If you need help with pain management, I'd recommend Manage Your Pain: Practical and Positive Ways of Adapting to Chronic Pain by Michael Nicholas
  • 📕If you would like to better understand how to find your baseline and get better at pacing, I'd recommend Overcoming Chronic Fatigue by Mary Burgess