Living with Covid-19 infection is weird as hell, Published in the Daily Maverick, 19 May 2020
I suspect I’m the original Covid-19 bore.
I’m the one you’d sneak away from at a cocktail party – if we still had those. My family has had enough of my excessive lectures, demonstrations of correct hand washing, disinfecting surfaces and door handles, or debates about whether and which masks you should wear. And don’t get me started on the stupid safer sex guidance delivered by organisations that fail to understand the ins and out of modes of transmission.
You might say I’m over-informed.
From early January 2020, streams of scientific articles landed in my In-box from a World Health Organisation (WHO) mailing list that I’ve been on for a decade. Schooled in treatment literacy by early Aids activism, I was fascinated by early epidemiological papers, emerging descriptions of natural history and infectivity, and then of course there’s the ebb and flow of clinical trials of various treatments, especially HIV antiretrovirals. I was glued to “The Novel Outbreak”, listening to my brilliant journalist friend James Chau reporting from Wuhan’s frontline.
I could go on and on.
And I have.
All of which makes it slightly awkward to reveal that this very pesky virus managed to find its way into my mucosa and is now sitting – very heavily – on my chest.
I had waves of embarrassment and discomfort when I first messaged people. Messages screamed back “What??? How?”; some made delicate enquiries about symptoms then flipped to “Just curious – do you know how you got it?”
Checking through old messages, I was moved to see that not one of my friends living with HIV asked how I got it. They know, very well, just how judgmental that “So any idea how you got infected?” question can feel.
Now when I tell people, I send a pre-emptive explanation: “Since you ask, I reckon it must be Waitrose.”
The more I come out about my Covid-19, the more I realise that instead of criticism, most people are doing their own risk assessments and scrambling for reliable information – something in short supply. Early in the pandemic, it makes sense that knowledge is new, evolving and often insecure. If a seriously over-informed person can get it, what must they do to avoid my error?
There’s the added worry of passing it on to others too.
I broke off writing this to order a food delivery from a local café and found myself anxiously tapping out a message explaining that I couldn’t have been infected when I was last there and we’d chatted so happily about my funky face mask.
Cloth masks are not yet mandatory here, but a German friend made me a really stylish one. Since I received my red polka dot mask, I always wear it out of the house, even sitting on the doorstep to catch some sun, sometimes choosing outfits to match. I can’t explain how relieved I am that I wore it when I met up with two friends for a socially distant walk, rather bossily forcing a careful two metres between us.
That was two days before the really nasty symptoms kicked in, when I would have been at the peak of infectivity. I suspect they thought I was indulging in some fancy new fashion craze; they laughed when I asked them to move away so I could lift it to try and smell jasmine flowers. Two weeks on, I’m reassured that both remain symptom-free.
So how do I think I got it?
The simple answer: I’m in a very high prevalence area, one of the top three UK boroughs for Covid-19 deaths. We’re the European country with the highest death toll. Official statistics have just topped 55,000 and are climbing. It’s a veritable virus stew in the streets outside my front door.
I live alone, and the week when I got infected I hardly left the house. I was caught up in a very intense process. In between day-long webinars, every few days I would dash out to forage for food at one of the local supermarkets.
I love good food and great wine (one of many reasons why I adore South Africa) so Waitrose – a slightly upmarket version of Woolworths – is my shop of preference. A supremely middle-class supermarket, the distancing and disinfecting routine has been in place since lockdown started. It can take 15 minutes to shuffle from two-metre marker to marker outside until one of the security guards, wearing gloves and masks, let’s you in the door.
More guards are deployed around the shop, urging people to keep their distance from each other, to stand on carefully measured stickers when waiting for tills where cashiers work from behind plastic screens. Yet another guard sits two metres beyond the check-outs, disinfecting used shopping baskets and trolley handles.
The elegant Covid-19 ballet happens around the food and veg, customers use wide aisles to navigate thoughtfully around each other, and glare (often over their N-95s) at people who get too close. First stop when I get home is the sink. I don’t unpack bags until I have scrubbed away like a surgical extra in Grey’s Anatomy.
So what happened?
One thing that is increasingly clear is that infection and the course of subsequent illness is dose related. That is why so many care and health workers succumb. You cannot get a virus if you don’t come into contact with it – and the more of the virus that you come into contact with, the more likely that you will not only get sick, but get sick badly. That is why it is so important, to keep countries and cities virus-free or virus-low.
Maybe my error is that I rarely wash my hands again after I put away the food? Too many groceries are still covered in plastic wrapping. An alarming headline popped up on my Twitter feed with the Economist screaming: The virus can stick around for at least three hours in the air.
”Well that’s it”, I thought.
I’d re-tweeted it before I realised that they were just referencing an article I’d read several weeks ago showing that the virus hangs around longest on plastic and stainless steel (around 72 hours in the lab) and not so much on cardboard (24 hours) – although long enough to make rigorous hand washing after you pick up your mail a sensible idea.
What I hadn’t noticed on my original read of the article was the authors’ conclusion:
Our results indicate that aerosol and fomite transmission of SARS-CoV-2 is plausible, since the virus can remain viable and infectious in aerosols for hours and on surfaces up to days (depending on the inoculum shed). These findings echo those with SARS-CoV-1, in which these forms of transmission were associated with nosocomial spread and super-spreading events, and they provide information for pandemic mitigation efforts.
Don’t panic. The jury is still out on that one – but before I re-read the article, I’d already been wondering.
On the first day of my really nasty symptoms, late at night struggling to make sense of my own infection, I dropped a note to one of South Africa’s best doctors, asking for her assessment of whether the supermarket was to blame. I knew she’d been pondering the question of whether aerosol transmission was plausible. What I didn’t know was how amazing she would be in supporting me through the worst days of this illness.
Early the next morning, she called. Like all of my international friends, she wanted to know if I’d been tested. No, not me, and not my son either. It is crazy, we know.
We talked through my symptoms and she agreed: classic case.
At first, I’d wondered if my symptoms were a psychosomatic reaction. They’d emerged immediately after I finished writing a Maverick Citizen article on prevalence rates in the UK.
I’ve been vigilant with daily temperature checks since March 2020, in part because of my mother’s cancer, and the acute need to keep her safe. Every day I fill in the “Covid Symptom Study” App on my phone. Prof Tim Spector’s team has now recruited over three million Brits to track our normal and not so normal symptoms in an effort to help researchers get a handle on the progress of the virus, and to understand the natural history. This study is why we now know that loss of smell or taste (anosmia) is a common symptom, and recently, scientists started using the app to get a handle on the sex distinctions (could oestrogen be a protective factor explaining why more men are getting sick?).
Tick, Tick, TICK
As I pressed save on my previous article, I checked the box “Not feeling quite right” and it took me through to the follow-up page. I’d been there a couple of times, but this was different:
- Sore throat? – tick;
- Breathless? – tick;
- Headache? – tick;
- Skipping meals? – tick;
- Nausea? – tick;
- Sore or itchy eyes? – tick;
- Unusual fatigue? – Big tick.
The exhaustion was overwhelming, combined with not eating, it was glaringly obvious that this was no psychosomatic reaction to knowing that local risk levels were so elevated. Known for my high levels of energy and hearty appetite, the next day fatigue had me stranded on the couch for hours at a time, simply unable to muster the will or skill to get up.
The fridge is a short four-metre walk, but I could find no reason or energy to go to it. For three days, I just reached for the bottles of water at my side and tried to keep hydrated. Most mornings I put the kettle on, sat down while it boiled, and found myself an hour later, still on the chair, staring ahead with no strength or interest in making that cup of tea. When I got to it, it tasted like dishwater.
Living alone, and having a tad too much information, I realised I needed external checks. My friendship group includes some of the world’s best doctors, including several who have been deployed to their national Covid-19 efforts.
The day before I sent my “Do you think aerosol infection might be real?” message to South Africa, I’d sent a tentative WhatsApp to my friend in Malaysia. It was late in the evening for her, but she phoned back immediately, instructing me to get a pulse oximeter to monitor my oxygen levels. It was delivered the next day, by which time the coughing, breathlessness and chest tightening had really kicked in.
Ollie, my oximeter, is a small electronic device that beeps away when it’s on my finger. He lives by my bed, checking that my pulse rate is below 100 and that oxygen is saturating at least 95% of my lungs. Happy hypoxia is a jolly term for one of Covid-19’s silent killers: a person seems quite normal but very little oxygen is getting down into the lungs and the blood is turning muddy brown. The odd dip is fine, but consistent declines in oxygen saturation require an urgent call for help. Another doctor has been teaching me “lung toilet” – morning exercises to keep my airwaves open and receptive.
Friends on four continents now get regular photos of Ollie’s readings – kinder at the start than spluttering in their ears, now easier than listing confusing symptoms, which still regularly include dizzy, light-headed, brain fog.
Once I knew I wasn’t making things up, I knew that – just in case this worsened – I should be in the local system, not relying on far-away friends with very busy jobs. Since I’m living 60 miles away from my usual home and GP service (on the lovely Brighton seaside), I dialled the non-urgent NHS number 111.
After a few frustrating hiccups (made tougher by extreme exhaustion), I got through the triage: “Yes,” they said, “No question, these are the symptoms. Keep your phone to hand, a clinician will call you soon.”
A few hours later, the phone rang with “No Caller ID”: my Brighton GP. He didn’t know why he’d been told to call me urgently. Struggling for breath and increasingly exhausted, once again I described my symptoms, and one more person agreed that it sounded like a classic case of Covid-19.
But what to do?
He’d like to refer me to a “Covid HotHub”, and maybe someone would even come round to test me. But he couldn’t do that: the UK’s range of healthcare services are locally determined by CCGs (Clinical Commissioning Groups) who pick up the costs – so it was up to my local, London, CCG whether a HotHub was for me.
Next step: a local GP.
I telephoned every GP practice within a two-mile radius. Explaining my situation over and over, increasingly breathless and coughing, I begged them for ideas when one after another they told me that their lists were full and they couldn’t accept a temporary patient.
Four surgeries told me to call an ambulance and get tested at Accident and Emergency (A&E), even though my symptoms had not worsened to a level meriting such a waste of NHS resources.
Eventually, three days later, a surgery nearby signed me up and the GP phoned late on a Friday afternoon. We had a great chat: she was just back to work after four weeks off with her own Covid-19 (one of the thousands of British BAME Health workers who’ve come down with it).
She shared great advice from her own experiences as well as her clinical wisdom. Like my band of medical mates around the world, she gave strict instructions to monitor my fever and oxygen saturation levels and reach for an ambulance if either headed in the wrong direction. She worried that I was on my own and we were heading into a holiday weekend.
My new GP could only refer me for a drive-through test. Without a car, I could try walking to an A&E department (physically impossible) or apply online to have a home test kit mailed to me – but that wouldn’t happen until Monday.
On Monday, I spent three hours trying online and with more calls. Still no joy, they’d run out. By then, not only were my symptoms easing a little, we knew that my viral load would be dropping too.
The antigen test (for a good description of the different types of Covid-19 tests in use, see here), only works when viral load is high, for a short time after you get the virus. If I waited for the test kit to arrive in the post, it would be unlikely to show up positive. Nothing would change my clinical management and monitoring.
I gave up.
It’s day 15 now. There is some risk of a nasty kick-back in the second week, but it seems rare, and fortunately I have no underlying conditions. I still check Ollie the oximeter often, and my global medical support group remains vigilant, messaging me daily. I was relieved, on day nine, when they stopped checking every couple of hours.
I’d woken up early and hungry – promising signs – although my chest was still very tight. I was pleased to have enough energy to start writing this. After bouncing around for a couple of hours, eating the delicious salad I’d had delivered, I was slumped back in bed with two litres of water and Ollie at my side, listening to the sirens. I still hear about 10 a day.
The UK government says our epidemic is easing and most new cases are in nursing homes. How can they know? If you don’t test, you don’t find. Mailing out antigen tests is a smart way to hit testing targets, but not to find cases, since few people will still have detectable viral load when they arrive.
My Facebook feed is full of friends spending £70 to get antibody tests done privately. That same feed is increasingly littered with stories from other people – many medical or working in public health – telling their tales of the bitter sting in the Covid-19 tail.
As the epidemic matures, many – especially those of us in the more mature age groups – find ourselves struggling to bounce back. On Saturday, I left the house for the first time. 15 minutes later I was back home, feeling wretched. My appetite is back, but the idea of wine is repulsive. I rock between glorious moments of energetic near normality, and sofa-pinning exhaustion, heart racing, bizarre dizziness, headaches and brain fog that have me lurching for my support group.