‘We're not in the death statistics but long Covid has robbed us of our lives... we are invisible'
Susie Boniface speaks to one couple still suffering the devastating after effects of coronavirus, one year after their infection
Daily life for Antony Loveless was once packed with danger and excitement. As a freelance war photographer and author of bestselling military books, he was ready to dash to the front line at any time, with his “go bag” always packed.
“I felt invincible. The world seemed to be built around me, and I took it for granted, although whenever I did come home it was to find the milk had curdled,” he chuckled, then sighed.
“Now I’m invisible. It’s a battle just to get out of bed in the mornings.”
Today, Ant barely leaves the house. When he does, he walks with a stick and drives a car with a blue disabled badge. In January, he and partner Claire Hooper tested positive for coronavirus and almost 12 months later are among the estimated one million Brits with long Covid.
“After Freedom Day in July, life went back to normal for everyone else. But we’re wrestling with benefit applications, facing bankruptcy, and the world treats us like we don’t exist. On a bad day, I can’t even get out of bed, the pain is so bad,” said Ant, 54.
Claire, 52, a former nurse and health visitor, is even less mobile.
“An exceptionally good day is being upright for an hour or two. The fatigue is crippling, I can’t think in a straight line because of the migraines, and if I run the vacuum round for 10 minutes I’m laid up for the rest of the day,” she said.
“Our personalities have completely changed. Ant has lost his confidence, I’m constantly irritable. Our world has shrunk to just two rooms.”
The couple were teenage sweethearts, reconnecting two years ago. Ant was lead accident investigator at the Gateway port in Tilbury, while Claire worked for Southend council. “On New Year’s Day I went to work, and by mid-morning felt like I’d been kicked by a horse, and had a temperature of 37.9C. I went home and Claire and I both took a test,” said Ant. The pair weren’t hospitalised, but suffered badly with all the usual symptoms – fever, loss of taste and breathlessness.
“There were a couple of nights in those first few weeks when we said goodnight to each other and didn’t know if we’d wake up in the morning,” said Ant.
“After a month I went back to work but on the first day I left early and went home to bed. That night, I had a temperature of 39.9C and a resurgence of all my symptoms.”
The pair spent months almost entirely in bed, surviving on Hula Hoops and chocolate buttons, with chronic fatigue. Ant said: “You’re like a battery with only 20 per cent power. Everything you do or emotionally uses it up. And if you overdo it. it brings back the original symptoms. "We didn't even have the bandwidth to cook a meal for ourselves Anti-vaxxers urge people to rely on natural immunity to fight coronavirus. But Ant and Claire say their immune systems collapsed under its onslaught. Claire has regular trips and falls. She has been diagnosed with Type- -2 diabetes, hypertension and is being checked for a possible resurgence of a cancer she had years ago. Ant has been diagnosed with neutropenia„ a loss of white blood cells which fight bacterial infections. He has is a constant case of Covid tongue, which is cratered and covered with ulcers as a result of the
bacteria naturally found in mouths. He has also been left with an autonomic disorder called postural orthostatic tachycardia syndrome, or POTS, which affects his ability to regulate blood pressure. He suffers lightheadedness and palpitations, with regular falls. Long Covid also impairs brain function, which means these highly intelligent people struggle to find the right words. During our chat, their thoughts and speech become disordered – their batteries have run down. A benefits advocate had to fill out their 45-page application for a Personal Independence Payment. “Reading that back was cataclysmic. ‘Unable to prepare own food, unable to go to the toilet on his own’. It was like reading about an old man, but it was me,” recalled Ant. They both have tremors, headaches and diarrhoea on a daily basis. They’ve lost their appetites, and Claire has lost six stone, going from a dress size 22 to a 10, while Ant has dropped almost four stone.
“We’ve both got a fairly black sense of humour,” said Ant. “She says now I look like the 16-year-old lad she fell in love with. She gained an inch in height after so much time lying down. She’s Amazonian, but frail.”
Both are still too ill to start rehabilitation with their local hospital’s long Covid clinic, which has discharged them. They have lost their jobs and a joint income of £50,000 a year.
They used their £10,000 savings to cover the mortgage, bills and disability equipment. They expect their car to be repossessed, a six-month wait for their PIP, a year to get housing benefit and have just lost £20 a week from Universal Credit. This year Claire was expecting to be birth partner for her daughter Bella, 21. Instead, Bella had to care for her and Claire can cuddle her grandson only for short periods while sitting on the floor, in case she drops him.
Ant’s book launches were once attended by top brass and celebrities. He finds the change hard to reconcile.
“I’ve accepted this is who I am now, but I’m grieving for everything Covid has robbed me of,” said Ant.
“There’s no official support for us. Our advocate said we should apply for social care, someone to help prepare some food, do the laundry. A social worker rang me and said, ‘You’re not even old. What’ve you got, a bit of tiredness? We’re not sending someone round to be your maid and put the washing on’.”
Ant sighed again. His battery is almost empty. “I just want people to hear us,” he says.
More information, research and support can be found at longcovid.org