Beating long-haul COVID-19
This year I became a “COVID-19 long-hauler”. Not one of the more imaginative or fun nicknames I’ve ever had. But then, nothing about having COVID-19 is fun.
For “long-haulers”, symptoms can last weeks, a few months, many months, and I’m afraid to say that soon this will likely be years. It’s typical that they come in waves. Huge, crashing waves that drag you under without warning, toss you around in a world of confusion and darkness, and spit you out breathless, exhausted and weakened. For me, they lasted on and off, 4–5 months. Yet the impact on my life is permanent, and in many ways I am actually grateful.
My experience happened during the strict Barcelona lockdown, where for the first 7 weeks we could only leave our houses for groceries, the pharmacy, or to walk the dog. Unable to see friends or family while so ill, I struggled with the biggest mental health battle of my life.
But I count myself one of the lucky ones. Now I feel healed, I’m sharing my story and some advice, in the hope it will be helpful to others still suffering from long-haul COVID symptoms, and informative to those wanting to provide support.
Wave 1 — March
On Saturday 21st March, we’d been in lockdown one week, and I had my goals in place to use this as an opportunity to develop and achieve. Spanish, learning to cook, boot camp YouTube videos, taking courses, etc. I was ready to go, and prepared for whatever was going to be thrown my way. Go me! But although I’d trained for a marathon, I did not expect an injury after the first mile.
So on this Saturday, I got up early and started practising Spanish. Within 10 minutes, I lost all concentration, and couldn’t keep my eyes open or my body upright. All I could think about was sleeping. I went into my bedroom and slept for 3 hours… only an hour after waking up. For someone who slept 7 hour nights, did not nap, and rarely had issues with tiredness, it was odd. This fatigue was the symptom that affected me the most throughout everything. It was chronic, scary, and I often wondered if I would ever have energy again. Over the next few days, more symptoms appeared. I got severe shivers, where I was in bed with a duvet + 2 blankets + 2 jumpers + the heater on. I checked the outside temperature, it was 17 degrees and sunny. I gradually lost all sense of smell and taste. Imagine eating chicken and vegetable soup, and all you taste is air. I could have been world champion in the cinnamon challenge — I was piling the stuff on my porridge and couldn’t taste a thing. And terrible diarrhoea, although this could have been a lot worse if I hadn’t had the previous symptom mentioned. And I looked ill, I mean really ill. Think Sweeney Todd. I had dark circles under my eyes and looked like I hadn’t slept in weeks, yet it’s all I’d been doing.
Now I bet you’re thinking: “That sounds like coronavirus!” But hindsight is a deceiving friend. In March, the high-risk COVID-19 symptoms given by the World Health Organisation were cough, difficulty breathing and fever. I had none of these, so assumed it was the flu, took no time off work, and gave myself no time to recover. I then found out 3 work colleagues had exactly the same symptoms I’d had, and that “flu” became questionable. But tests were impossible to get in Spain, so I was left in limbo not knowing one way or another.
And when I could muster up some brain functionality, I forgot basic details like friends’ names, the Spanish for please, or how to cook an egg.
But as the symptoms (bar some fatigue) had dissipated, I didn’t worry too much. I actually thought if I’d had it that was probably a good thing. Most of what I was reading suggested that I would build up antibodies, and wouldn’t be able to get it again. Hooray! That was that. At least, I thought it was.
Wave 2 — April
A few weeks later, the same symptoms came back with a vengeance, and this time there were more. A week-long headache, that no amount of paracetamol gobbling could cure. Brain fog, where I couldn’t think about anything at all for hours on end. I’d lie in bed and literally do nothing. And when I could muster up some brain functionality, I forgot basic details like friends’ names, the Spanish for please, or how to cook an egg. Now I’m no Jamie Oliver, but it was eggtraordinary. My metabolism sped up so much, that even the 5 large meals a day still left me as ravenous as a bear coming out of hibernation. And this time, I had a fever. FEVER. So… hang on. What was going on? Hadn’t I had COVID before? Could you get it again? I thought antibodies were a thing!
While frantically Googling “Can you get coronavirus twice?” with one hand, I rang the doctor with the other. He insisted that as I had fever, I had to go in and see them. So masked and gloved up, I entered the doctor’s surgery which looked like a scene from the film 28 Days Later. I was overwhelmed with admiration for everyone working there, risking their health every day to help others.
The doctor told me the likelihood was that I had contracted COVID-19 when I first had symptoms, and that they were resurfacing — he advised me it can happen with viruses if you don’t rest and recover. So I had probably passed the contagious period, but as tests were still not available, I had to quarantine for another 2 weeks. Barcelona was still in housebound lockdown, so not a huge challenge. Still, it did give me immense gratitude for my balcony, which gave me fresh air and sunlight for a few hours a day.
But it struck me how little the people we place our trust in knew — doctors, the government, friends, family. We were (and still are) all making many mistakes, trying to beat an enemy who’s always one step ahead. That big word UNCERTAINTY hit me like a smack in the face.
Both results were negative. What?! Had I not had it? Was the test wrong? I was confused, sad, and feared judgement and disbelief that I’d ever had the virus.
I took sick leave from work, the short-term symptoms disappeared, I went back to work, and we remained in house lockdown until 2nd May, when we were allowed out for one hour a day to exercise. By this point, Barcelona had spent 7 gruelling weeks inside, and I’d had 2 waves of COVID symptoms, for roughly 1–2 weeks each time. The one that never left was the fatigue, which continued to overwhelm me. COVID had turned me from a mad gym bunny into someone who could barely survive a light yoga session. I was constantly exhausted. So my hour of allowed exercise was spent walking to a nearby park, sitting for a bit, walking home, snail-climbing the 3 flights up to my house, taking breaks along the way. All the while, huffing and puffing like the Big Bad Wolf, whose motivation was not 3 little pigs but a 3 hour nap. Oh yes, hours of napping every day, along with 10-hour sleeps at night.
But I battled on.
Wave 3 — May
I left it 3 weeks before seeing friends, just to be on the “safe” side. But the day after seeing them, the symptoms decided to rear their ugly heads once again. I felt the fatigue, brain fog, and dread wash over me. I panicked, was there a chance I could have given it to my friends? Although likely that my contagious period was over, I still did not know if I’d had COVID at all. What would they think of me? What if they became ill? What if, what if, what if?
Fortunately tests had just become available (2 months after I first displayed symptoms), albeit only privately, at a fee, for people who had symptoms. So I had an IgM and IgG antibodies test (PCR was not a thing yet). IgM is supposed to show you whether you currently do/do not have COVID-19. IgG is supposed to show you whether you have/have not had COVID-19 previously at some point. So, naïve little me, fully expected the result to be IgM negative and IgG positive. But COVID is sneaky and full of nasty surprises. Both results were negative. What?! Had I not had it? Was the test wrong? I was confused, sad, and feared judgement and disbelief that I’d ever had the virus. We now have a lot more information to suggest negative IgG tests are not the be all and end all, but back then we didn’t know any better. I was selfishly relieved when I found others online who’d had the same experience. I was not alone.
Well, at least I could go out and see friends now knowing I was not contagious. Right? But it wasn’t as simple as A, B, C. My mental health was in tatters. I had a constant feeling of being low, and not wanting to speak to anyone. And I had developed anxieties over everything. Getting out of bed. Leaving the house. Exercising. Eating. Drinking caffeine or alcohol. Seeing friends. My job. People’s judgement. Developing chronic fatigue syndrome/ME. The future. The past. The present. EVERYTHING seemed dark, dismal and overwhelming.
A real low point was when Barcelona beach opened up, my favourite place to be, as it symbolises freedom, happiness, and being with friends. I couldn’t go. It was too far to get there, and I worried that I would feel exhausted and not be able to get home.
Then I had to quit
I’d taken 3 weeks of sick leave on and off. I had such severe anxiety that I was waking up crying. I had the worst week of my life, and at this point I have to say how grateful I am that I have a good support network around me who helped me see my priorities.
I needed a break from everything. All my ambitious life goals that I’d set in place went out the window. And I not only had to quit my job that I loved, but every other thing I was working towards achieving. I had to just be.
Since then, any sort of self-development or challenge has taken a backseat to rest and recovery. My goals have shifted to daily meditation, yoga, practising gratitude, recognising when I need a break, spending time with people I really love, and being kind to myself when I can’t do something that was previously possible. I’ve built back up my physical strength, and am now back to exercising the amount I was before. But I check in with myself daily, ask myself how I feel, and listen to my body.
Illness is a part of every human being’s experience. It enhances our perceptions and reduces self-consciousness. It is the great confessional; things are said, truths are blurted out which health conceals. Virginia Woolf — On Being Ill
There were many milestones throughout my Odyssey. But nothing quite felt like the first day I made it to Barcelona beach, walked along it with a good friend, and decided on my next life chapter after defeating COVID-19. A memory that I’ll hold in my heart forever.
Advice for long-haulers
These following things were instrumental in supporting my mental and physical health during my COVID-19 battle:
- Meditation and yoga provide a time and safe place every day to just be with yourself without judgement. Stretching and light yoga are also a great way to exercise if you have fatigue. I especially love Buddhify, Headspace and Yoga with Adrienne.
- There are several Facebook groups for people with long-haul COVID which gave me an immeasurable amount of advice and support in not feeling alone. For example ‘Long Haul COVID Fighters — Round 1 (Onset of illness PRIOR to 04/01/20)’ and ‘Long Covid Support Group’. I encourage you to join these, or other support groups, and share your experiences as much as you can online— you don’t know who might be eternally grateful to read about them.
- Ask for help from people you can rely on. It takes bravery, but remember…
- Implement gratitude into your life. Keep a journal of what you are grateful for, and tell people why you are grateful for them. Because although the cup might be half empty, we are lucky to have a cup at all.
- If you are feeling overwhelmed or suffering from brain fog, “Checking In with Susan David” and “Meditative Story” are helpful podcasts to keep your brain stimulated with words of support. I particularly like the episodes “Bonus: Self-soothing exercises with Dr. Kristin Neff” and “I let go of my plan — and found myself, by Krista Tippett”.
And remember, you will be ok. It will take patience, prioritising being over achieving, self-care, and being kind to yourself. However deep and dark under water those waves take you, there is a light at the surface.
