My long Covid journey: Learning patience with my own body

In the moments of pure terror I felt as I was rushed to hospital, my yoga breathing kept me conscious as my oxygen level dropped so drastically I was dizzy and found it difficult to stand. As the weeks unfolded after my discharge from hospital, I began to realise that I would struggle with “long Covid” for an unknown period. 

The official term for what ails me is Post-acute Sequelae SARS-CoV-2 infection (PASC). What follows is an account of my journey to understand how to live daily life now. In a nutshell, PASC, or “long Covid”, as it is more commonly known, is a gut-wrenching slow burnout that is entirely unpredictable, and requires a much greater level of patience and understanding of my own body than I’ve ever had before. 

On day one (4 January 2021), I started to experience Covid symptoms: body pains, fever and a migraine. On day three, my Covid test came back positive, confirming that I had, indeed, succumbed to the second wave of this terrifying pandemic, despite my careful efforts to keep following the prevention protocols that had kept me safe in the first wave. 

I was in shock. I never removed my mask in public or communal spaces – from the mall that I visited once a week, to the elevator in my building (where some of my fellow residents selfishly refused to wear a mask). Social visits were rare and limited to outdoors.

As each day passed new symptoms emerged, including diarrhoea, nausea, extreme fatigue and dizziness, which unfolded in dreary succession. Then, on day six, like so many others who have been infected by this new virus, my health worsened. My oxygen level dropped below 92%, and then on the morning of day seven, to a dangerously low 85%. 

Gasping for air and extremely dizzy, I prayed and practised deep yoga breathing, which kept me conscious. I called my brother to take me to the hospital immediately even though I had refused to be admitted the night before. Fear had made me unreasonable and stupid. I was admitted to hospital hours later that morning. Oxygen was not easy to obtain and it took time to find a bed, too. What followed was five terrifying and lonely days in the Covid ward. The hospital only allowed a drop-off at the emergency room, but no visitors. I kept thinking that I, like so many others, would die alone in a hospital bed. It was haunting to wake up in the middle of the night to the calls of fellow patients in the ward who were gasping for breath. 

How can I ever put into words my gratitude for all the nurses, physiotherapists, cleaning staff and doctors who healed and assisted me during my hospital stay? I watched as they worked tirelessly, with the greatest care, risking their lives every day to ensure the best possible patient outcomes. My respect for them is unparalleled.

During my stay in the Covid ward I received oxygen and medication in the form of tablets, a drip and extremely painful injections in my stomach. To this day, I experience paralysing anxiety at the sight of needles and even the thought of going for blood tests. There have been numerous blood tests in the past few months as Covid has given me the unwelcome gifts of new health conditions.

The two doctors who have treated me since leaving the hospital could not explain some of the strange new things affecting my health, because long Covid is so new and relatively unknown. 

Here I am, nine months after being discharged, experiencing waves of debilitating after-effects. For a few weeks, I experienced Achilles tendonitis in combination with plantar fasciitis, first in one foot and ankle, then the other. I was in excruciating pain whenever I tried to walk.  After a few weeks, with the aid of crutches and lymphatic drainage massages, I was able to walk without limping or pain. 

Doctors assured me that the fatigue and brain fog would pass with time. However, it soon became clear that I had developed post-Covid fatigue, and my physician later confirmed the diagnosis of PASC. 

How do I begin to explain how exhausting PASC really is? 

For months I had to ask for help with even the most mundane tasks, such as cooking and cleaning. Some days I still can’t accomplish multiple tasks in succession. Now I can cook, but I need a break before I can do the dishes, and another break before I get into the shower, and then rest afterwards. 

Thankfully, the brain fog has passed for the most part. I can remember most names again, but I sometimes still find myself staring in frustration at the screen as I try to send work emails to colleagues whose names I simply can’t retrieve.

Long Covid, I’m learning, is a daily rollercoaster. How I will feel each day is entirely unpredictable. A day with excessive struggle to accomplish daily tasks leaves me exhausted and anxious. Even now, nine months later, I still experience frustration with the physical limitations of my body. My mind is often racing ahead with everything I want and need to do, but my body can suddenly stop me in the middle of an action, and there is absolutely nothing I can do to complete that task in the moment. 

On a particularly bad day, I had been driving my car for just 10 minutes when I had to turn around, as I was overwhelmed by nausea, attacked by a headache that emerged from nowhere, and burning pains in my upper arms that hit with an intensity that frightened me.

At my best, I can drive for 20 minutes without needing to nap immediately afterwards. Yes, I said nap – like a child. I’ve been taking midday naps when I can, which is not enough rest if you work a full day. 

I am fortunate to be able to work online from home most days, but my work is mentally demanding and I need to be alert as well as decisive. Initially, I pushed through my usual full work days. However, I didn’t realise how much damage I was doing.

On weekends I tried to catch up on sleep, an exercise that turned out to be futile, for two reasons: first, along with Covid came insomnia. Second, my occupational therapist explained that I am often in an energy deficit owing to energy expended the previous day. The bottom line is that I can never “catch up” on sleep. If I overdo it, I go to bed tired and wake up exhausted. My doctor offered sleeping tablets, but these leave me feeling groggy for about two hours after waking up, which means I can’t drive in the early morning as I experience brain fog. Eventually, my body crashed in May and my physician booked me off to rest and recover for several weeks.

On a good day I have sufficient energy to work for hours online at home if I take a nap and breaks during the day. My friends and family have a hard time understanding that I can drive my car one day, but am sometimes unable to get out of bed the next. 

How do I explain that my energy level is often low? How do I plan a life in which I’m debilitated by pain on some days, but not on others? How do I do my own inner calculus, carefully weighing the costs of doing too much one day, knowing I’ll feel tired and achy later on or the next day, or even bedridden for several days afterwards. 

Professional guidance has been crucial to my continued recovery. I’m extremely grateful to be treated by remarkable healthcare practitioners whose bespoke rehabilitation programme has helped me to improve in the past two months. The depression and confusion about my body’s limitations have lifted, and I feel hopeful as I continue my slow recovery.

It remains a strange experience to be chronically unwell, and what I’m learning is that each person’s post-Covid journey is unique. It’s not helpful to invite comparisons between experiences. Some days I’m my old self, and many days I’m not. So, when you see me leave my home, know that I’m having a good day or a few good hours and taking advantage of that. Know that I celebrate every improvement in my health, and that I’ve become conscious of the small everyday joys when my energy level increases and fatigue leaves me for a while. 

I am deeply appreciative of my family, friends and colleagues who have been exceptionally helpful and patient with me during these turbulent and uncertain times. As I keep moving on my path to improved health, I am thankful for everyone who has been a part of my healing journey. DM/MC

Khairoonisa Foflonker works at the Faculty of Medicine and Health Sciences at Stellenbosch University as Manager of Student Affairs on the Tygerberg campus. She offers strategic direction and a strong social justice approach to support services offered to medical and health sciences students. She also facilitates diversity, inclusivity and intercultural humility workshops.