'I had to kill my family': Long covid & the brain

There were rumbles for months beforehand, but for many, the Covid-19 pandemic came out of nowhere in March, and upturned normal life overnight.

The economic consequences of the pandemic have been far-reaching, but many people are also struggling with a virus that has continued its rampage through their bodies and their lives for the last six months.

Long-haul Covid is a growing concern in the medical community, but those struggling with the long-term effects of the virus are battling to convince doctors to take them seriously, the government to support them, and their friends, families and colleagues to understand that they can't get out of bed.

Many don’t have positive test results to bolster what they're convinced is true, since tests were scarce back in March and April, and even now, the type of test most commonly used (the PCR test) only detects the virus when people are infected.

One common thread among long-haulers is the neurological impact of Covid. Research is emerging to back up the virus's effects on the brain, particularly stroke and swelling of the brain (encephalitis). Scientists write in a paper published in the Lancet:

'The continuing pandemic, and the expectation that 50–80% of the world's population might be infected before herd immunity develops, suggest that the overall number of patients with neurological disease could become large.

‘Neurological complications, particularly encephalitis and stroke, can cause lifelong disability, with associated long-term care needs and potentially large health, social, and economic costs. Health-care planners and policy makers need to be aware of the growing burden.’

Aside from acute symptoms, long-haulers are struggling with the dozens of debilitating ways the virus has affected their brain – with little help from doctors, and no idea of when they'll be able to get back to life as they knew it.

At the height of what she understands to be Covid, Melanie Jones realised she needed to kill her family, and contemplated how she’d do it. She decided the best option would be to gather them in her husband’s car in the garage and put the exhaust on.

“The only thing that stopped me was that I have another daughter abroad, and the thought of her coming back to her whole family dead,” she says.

When she was 16, Jones, a researcher from London, cared for her dad after he had a brain injury that left him with neurological problems. Thirty-eight years later, she's seeing parallels with herself.

It started as a fever at the start of the UK going into lockdown.

“Five days into the fever I couldn’t breathe, I was having hallucinations. I realise that now, but at the time it seemed logical – my brain was starved of oxygen and I wasn’t thinking clearly.”

This is when Jones started thinking about how she'd kill her family. Recently, her husband asked her to help him out with something in the car, and she reluctantly obliged. But when she looked at the car, the memories of her hallucinations flooded back, and she had a panic attack.

Jones has since been suffering with chronic fatigue and brain fog, hallucinations, suicidal thoughts, flashbacks, loss of facial recognition, memory loss, bad spatial awareness, poor concentration, and verbal confusion.

“I recently walked to the corner shop with my daughter, and she stopped to talk to another family. I wondered why, because we didn’t know them. Afterwards she asked why I’d been so rude, and it turns out they were good family friends.” she says.

Another time, she asked a friend, who walked by with two older people, if she was going out with her parents.

“They looked mortified, and when I looked more closely I realised they were all the same age.”

The mix-up reminded her of when her dad, after his brain injury, drew a picture of his daughters and son, who are adults at the time, as small children.

“This made me realise my brain has been affected quite seriously,” she says. “I’ve lived all my life using brain and wits; it’s scary having them decimated.”

At times, she was convinced she’d had a stroke. But she’s never been seen or tested for Covid, she says, despite asking for help. Jones says her GP refused to believe her symptoms could be Covid.

“It’s psychologically damaging, it’s such a blow when you know you’ve been ill and the test is negative. The virus’s impact needs to be talked about and understood. The worst is not being believed.”

Sarah Lucas’s symptoms came on rapidly in mid-April – headache, sore throat, breathlessness – but doctors weren’t sure how to help her. “On day five, I was struggling to breathe and called an ambulance. The hospital said I wasn’t bad enough to go on a ventilator, so sent me home.”

After two weeks, the neurological symptoms began.

“I could feel the virus travel up my neck, burning up in my ears, up into my head,” she says.

She developed brain fog, fatigue and short-term memory loss.

“My husband got out a pack of cards and told me to pick one and remember it. I was in floods of tears 10 seconds later when I couldn’t remember what the card was.”

Now her children have gone back to school, Lucas has more to remember.

“I've been trying really hard, doing the card thing more frequently, and I’m starting to remember it better,” she says.

Lucas hopes her symptoms will continue to improve; she’s due to start degree in mindfulness at the beginning of October, but she’s still struggling to focus and read, despite being always a voracious reader.

“When was at my worst. I thought, ‘I need to seize the opportunity and do this course’,” she says.

On 19 March this year, Susie Golding went into hospital for her annual mammogram. Two days later, she developed a sinus infection.

“Then all these symptoms kept coming, one on top other,” she says, "They were all very unusual.”

She could hardly swallow, then she lost her sense of taste, developed a cough, then acid reflux, then she felt the virus go to her chest.

Golding's GP in Ontario, Canada, had no idea what was wrong with Goulding, and said it couldn’t be Covid because she didn’t have a high temperature. She got tested in June, which came back negative, but when Goulding listed her symptoms, a doctor told her she can probably assume she’s had the virus.

By this point, Goulding was suffering so much with fatigue that she was bed-ridden. She was dizzy all the time, she developed tinnitus, and tachycardia episodes at night, where her heart would start racing. Goulding has been passed from her doctor to specialists and back again, because no one knows know what to do with her, she says.

“There are thousands of people like me, who are struggling to connect with specialists who doubt they’ve had Covid. You have to advocate for yourself.”

“Now, I’ve got severe brain fog, and short-term memory problems. I won’t remember what I spoke with you about, and if I stopped mid-sentence, I wouldn't be able to retrieve what I was saying before,” she says. “If I start doing too much, my brain starts throbbing.”

Goulding hasn’t exercised in six months. Even a drive-in cinema date with her son left her in bed the entire next day.

“I’m afraid to do anything because of the fatigue. I have lot of mood swings, and often have bursts of anger. It’s just me and my son, so he’s bearing the brunt of this. But it’s hard to control your emotions when your brain isn’t working properly,” she says.

The anger, she says, is also partly down to feeling like she has a lack of purpose. Goulding is a floral designer and a “workaholic”, but has been unable to work since coming down with the virus in March.

“It’s an alienating time. People don’t want to be around you because you’ve had the virus.”

Alan Sandwell, 63, says he was healthy and fit for his age until he contracted what he believes was Covid. The joiner from Somerset had four months off work after coming down with symptoms, including breathlessness and a “banging headache”.

Sandwell has managed to return to work, but it’s a struggle – he’s still experiencing short-term memory loss, fatigue and brain fog. He had chest X-rays, which showed scarring on his lungs.

“Some days, the fatigue wipes the flood with you. I just get to a point in the day where I can’t think straight. It’s the weirdest experience, I stand there looking at the wall, I can’t think what was meant to be doing, I just go blank.”

“I have to be mindful what I’m doing, I’m checking everything ten times. It’s taking longer to make things because I can’t think straight.”

“I spoke to my GP today and got nowhere. It’s frustrating, they can’t tell you what the answer is. It’s a very lonely place because there’s nothing anyone can do for you.”

Unlike many other long-haulers, NHS worker Helen Dove, who was redeployed to work with Covid patients, was tested for the virus in April. She tested positive, and five months later, she's still unable to work, and battling to get help.

The virus started off with a cough and a sore throat, and progressed into shortness of breath.

“It felt like it got into my head, I got dizzy, nauseous and very painful sinuses,” she says.

In July, Dove managed a phased return to work for six weeks, but she was crashing on weekends, and became too unwell to continue.

“I couldn’t concentrate on anything, I couldn’t remember things. I thought I was getting through the week so I was okay, but I crashed on weekends.

Dove says her symptoms, including fatigue, pain, constant thirst, loss of taste, heart palpitations and a raised heart rate, remain debilitating,

“Sometimes I get up and have a shower. That’s it – then I’ve got to rest again. Hoovering can knock me for six.”

“I was struggling with memory and general brain function, I had a blinding headache unlike any I’ve had before, it was like tiny explosions going off in my head.”

Dove was admitted to hospital with one particularly bad headache, worried she was having a stroke.

“I was discharged with codeine. Doctors weren't interested in finding out what was wrong,” she says.

She couldn’t get a face-to-face appointment with her GP until the end of August – now her GP’s advice, she says, is to wait it out.

“She cut me off halfway through me listing symptoms. Unless we’re listened to, how are they supposed to get a full picture?”

“Awareness needs to be raise that people are suffering long-term effects and can’t get access to their GPs,” Dove says.

After 50-year-old Nic Mitchell got divorced, she treat herself to a week in St Lucia in December last year. On the 22 December, she says eight flights from Wuhan came in while was in Gatwick Airport. She realised she’d lost her sense of taste when she tucked into her Christmas dinner three days later.

Mitchell developed skin rashes, nausea, headaches, and lost 6 kg in eight weeks, but no doctor knew what was wrong with her.

She developed tremors, breathing became difficult and she started losing her vision intermittently. Nine months later, Mitchell is still getting stabbing pains, brain fog, confusion and short-term memory loss, and has developed arthritis symptoms in her hands and feet.

Mitchell says she has been to hospital with a suspected heart attack, and scans show that she has liver lesions and damage to her heart's mitral valve.

Mitchell was given a blood plasma test by Oxford University, who are trialling vaccines for the virus, which came back positive. But she is still left in the dark about how her symptoms can be treated.

She has had to start paying someone to walk her dogs, and has cut her hair short because she doesn’t have the strength to hold up her hairdryer. She has some good days, but these are bittersweet.

“There’ll be a few days when you can breathe a bit easier, do something normal without collapsing on the floor with shortness of breath, then bang – you can’t get out of bed and your eyes won’t open, and it’s back with a vengeance.”

The neurological symptoms of long-haul Covid, Mitchell says, should be taken more seriously.

“There’s a massive need for education for the medical sector, so they can embrace the neurological aspects of Covid-19. These symptoms are driving people into chronic depression and anxiety,” she says.

Civil servant Sally Jones (name changed) is used to presenting for hundreds of people at work, but after first developing symptoms in March, a relapse has left her housebound.

Jones has depression, and socialising used to a big part of managing her mental health before the virus - when we speak, she hasn’t been able to get out of bed for five days.

“I have a lack of concentration, I can’t always structure a sentence, and I forget words,” she says. “I’m getting daily headaches, shortness of breath, and heart rate spikes.”

Jones, who says she can barely walk 20 metres, is going on a break to the Lake District soon, and is “devastated” because she’s planning to use a wheelchair. She's been relatively lucky with her GP, who, despite Jones testing negative for the virus, believes she had it and has told her to rest. But she feels let down by the government, who she says aren't supporting long-haulers.

“We’re just dismissed. We’re very vulnerable and we’ve got nowhere to turn. The fact we’re not being recognised is so awful,” she says.