Monique Jackson believes she caught Covid-19 early in the pandemic and nearly six months later she’s still unwell. One of thousands in this position, she has been keeping an illustrated diary about her symptoms and her vain attempts to get treatment.
About a year ago, Monique Jackson watched a Ted talk about mushrooms and was enthralled. Fungi, the speaker said, are the original world wide web, they have a network that runs under entire forests; it enables trees to help each other if they get into trouble.
These days, as she battles the coronavirus for the 24th week in a row, it’s something she thinks about often.
She has suspected “long-tail Covid” a distinct reaction to the virus that doctors are just beginning to study. She got sick in March and at first it seemed to be a mild version of the disease but her symptoms have never gone away. Months later, she is struggling to understand what is happening to her body.
Monique is an extrovert, almost hyperactive she says. In normal times, she practises Thai boxing and jiu-jitsu and cycles 12 miles a day to and from her job in an art gallery in central London.
But the past few months have profoundly changed her life. Now, she has a list on her bedroom wall reminding her to save enough energy each day to brush her teeth.
“I’m not a lazy person,” she says. Some days, though, it’s all she can do to get down the stairs.
While her body refuses to co-operate she’s found an outlet for her restlessness in Instagram, where she’s started an illustrated diary of her symptoms.
She’s using the diary to tell people about this new condition and to connect with others in the same position, the “long-haulers”.
Much about coronavirus is confounding doctors but “long-tail” Covid is one of the most puzzling features of the pandemic. Why are some people getting a version of the illness that just isn’t going away – often those who were only mildly affected in the first place?
Monique got sick at the same time as a friend, after they took a train journey together. At the beginning they would keep in touch, their symptoms mirrored each other almost perfectly but then they broke off contact for a while.
“I had to stop, it was too freaky,” Monique says.
For the first two weeks she felt fluey – she was so tired she could barely get out of bed. It was still cold in London yet she was barely dressed and held a bag of ice to her head to keep cool. Thermometers were sold out but she thinks she must have had a temperature.
“It’s weird saying ‘I think’. So much of this is just, you think – but you just don’t know.”
By week two she was struggling to breathe. An ambulance came but said her oxygen levels were OK. “They told me I was having a panic attack, potentially off the back of symptoms.” She wasn’t tested for Covid-19 then because in March the UK was reserving the small number of test kits it had for the most extreme cases.
She tried to treat herself with natural remedies. When eating raw garlic and whole chilli peppers, she remembers thinking it was weird that she couldn’t taste anything. And she was tired. “I didn’t have energy to text more than two people a day,” she says.
After two weeks, some of the symptoms lifted but they just seemed to be replaced with new ones. “I had this pinch in the centre of my chest. And that pinch turned into what felt like a sort of fire,” she says. “It was like teeth-gritting pain on the left side. I thought I was having a heart attack.”
She called 111 and they advised taking paracetamol. They said it seemed to make the pain disappear for some people though they didn’t fully understand why.
The paracetamol worked but almost as soon as that pain went her stomach and throat began to burn “like fire” when she ate. Doctors thought she had an ulcer. It wasn’t until later that gastric problems were recognised as a symptom of the virus.
About six weeks in, Monique started having burning sensations when she urinated and pain in her lower back. The doctor put her on three different rounds of antibiotics before deciding it wasn’t a bacterial infection.
“It was just agony,” she says. “And then it just went.”
Monique cut herself off from social media. Even listening to podcasts was difficult because any mention of Covid would make her anxious and affect her breathing. A self-confessed news junkie, now she couldn’t face it.
She was afraid that if she went on social media she would see post after post of dead bodies. She found solace in online shopping but even entering a dress size in the search tab brought up horror stories about new symptoms of the disease. “I was actually scared of going on Google,” she says
After a while she asked a friend to fill her in on what had been happening in the world. One of the first things she learned was that a higher proportion of people from black and minority ethnic backgrounds were dying. Monique is mixed-race and she was scared.
“It felt like a horror film where all the black people died off,” she says.
One day she was lying in the bath listening to a podcast when the two white hosts casually mentioned that a lot of African Americans were dying from Covid-19.
She sat bolt upright and immediately grabbed her phone to email black relatives in the US.
And she reflected on the fact that the majority of people she had relied on lately had been members of minorities – the Uber drivers who took her to appointments, the hospital workers, the people in the corner shop where her food came from. “Everyone who I was seeing on my Covid journey,” she says.
In her regular day-to-day life, it wasn’t like that.
As weeks went by, some symptoms swapped out for others, getting more and more bizarre. A pain in her neck was accompanied by a strange sensation in her ear, like a packet of crisps being crushed in someone’s hand. Her hands went blue and she had to rush to a warm tap to try to bring the blood back into them. The doctor later asked if she had taken a picture, but it had been the last thing on her mind.
“I kept calling about new symptoms and I would be asked, ‘How’s your mental health doing?'” she says. “The implication being that these symptoms weren’t treatable or weren’t real pain.”
She got strange rashes all over her body or her toes would go bright red, sometimes she would wake up with stabbing pains in different parts of her torso.
One night, as she was talking to her friend on the phone she felt the right side of her face drop. She went straight to the mirror but her face looked normal. She was worried she was having a stroke but the doctors found no evidence of one.
She’s had strange sensations all over her body too. Sometimes it feels like someone is grabbing her leg with their hands or hairs are being dragged across her face – even inside her mouth.
She spent a lot of time trying to explain what was happening to doctors. Often she only had a five or 10-minute call in which to try to relay everything that was happening in her body and it wasn’t enough.
“If they’d said to me, ‘Look, you’ve got Covid, and we have no idea how to treat this,’ then that’d be fine,” she says.
She squirms as she tries to summarise how she was treated. She’s reluctant to criticise staff of the NHS, many of whom have given her excellent care but she says the system isn’t working for people in her position.
It was nine weeks before Monique could get a test for coronavirus. During that time, she was terrified of passing the virus to someone else.
Government advice said to isolate for seven days or until symptoms went away – but what if they never went away, she thought.
Her flatmates devised a system to avoid contact in the house – they each had a spot on the fridge they’d use to pull it open.
Then they would go to their rooms to eat alone.
One day she went to get some fresh air at a park near her house with a friend when a small child ran up close to her. Monique jumped up to get away from the toddler. The mother was indignant. “The child was nowhere near you!” she said. Monique tried to explain, she wasn’t afraid of getting infected, she was afraid of passing the virus on. Sick people should stay at home, the mother told her.
She hopes that her diary will help people to understand that it’s not always that simple.
While friends went out of their way to help her, Monique could tell that others were getting fed up. None of what was happening to her made sense to anyone. “One person said I was becoming obsessed with having Covid,” she says.
Finally the UK government opened up testing to anyone showing symptoms. She was thrilled but there was a catch – the only centre she could find was a drive-in and she didn’t have a car. “Most of my friends can’t even drive,” she says.
One friend did step up and give her a lift, and the fact that he put himself at risk in the process isn’t lost on her.
At the testing centre she expected to be reassured by nurses and doctors but instead it was staffed by soldiers, their khakis soaked on a sweaty day in June. As she stuck a cotton swab up her nose it struck her how young they were.
The results came back negative – proving that she no longer had the virus, though not that she had never had it. It was a huge relief because she’d been told this meant she couldn’t infect her friends and family. But she felt strange. “The feeling of being contagious is psychologically very hard to move on from,” she wrote in her diary later. It was also confusing because she wasn’t feeling any better.
Four months after she first got sick, she decided to move out of her house-share in East London. Keeping up with simple things like cleaning was difficult and she wanted to be around family who could help her.
Her breathing had improved, whereas at the beginning she couldn’t make it up the stairs without stopping to catch her breath by July she could do it one go.
But after picking up the hoover for about four minutes to try to clean her room she collapsed from breathlessness. She was in bed for three weeks after that.
“A lot of people tell me, ‘Monique, you will be able to cycle again and you will be able to box and you can come around to my house when you’re feeling better.’ But for me, that’s not really that helpful.”
Doctors still don’t know how to help people with these symptoms that won’t go away.
“It’s been about acceptance of what I can and can’t do and just being flexible because sometimes you’ll have plans for the day and your body just doesn’t care about those plans,” Monique says.
“The thing is, I would get stuck into doing emails or talking to doctors, and then I’d speak to my friends and then I’d be exhausted and I wouldn’t brush my teeth.”
She has managed to get mental health therapy which gives her tools to manage the new reality of her ill-health and she’s campaigning for this support to be available to everyone on the NHS.
One thing she never expected was that her illness would connect her to other mushroom enthusiasts.
Mushrooms have antiviral properties, she explains in one of her posts. But they’re also part of something bigger and more beautiful.
They’re the fruit of the mycelium – a network of underground threads, which are in contact with the roots of nearby trees. The mycelium swaps nutrients with these roots. Many fungi experts believe they also help trees to communicate with each other, taking nutrients from one healthy tree to another that is struggling.
It reminds her of the friends that brought food to her door, month after month. The people that she has relied on so much since she got sick.
“Isolated in my room,” she posted on her Instagram diary, “I felt more connected than ever.”
You may also be interested in:
Long after the start of the coronavirus pandemic, doctors are still on a steep learning curve. One surprise is just how long symptoms seem to last, for some patients. Dr John Wright of Bradford Royal Infirmary (BRI) talks to two young women who are still tired and breathless many weeks after falling ill.