‘Living death’: Spicer’s damaging effects of long Covid

She fell victim to the virus on January 2 after a family holiday to South East Queensland – but the persistent pain and suffering in the months since has taken over her life, rendering her unable to do a fraction of what she did before.A delayed diagnosis of post-viral pericarditis (swelling of the tissue around the heart) was taking its toll.“I was bedridden for almost two weeks with debilitating fatigue, a smoker’s cough – even though I’ve never smoked in my life – extremely sore throat, unusual skin rashes, bleeding gums, and a vice-like headache,” she says.“I lost a little bit of taste, but that was the least of my worries.“After getting out of bed and trying to resume normal activities, I developed a bad case of post-Covid cystitis for a fortnight but I was still able to walk the dog for an hour without feeling breathless.“It was around four weeks after initially contracting it that I started to really go downhill.”Spicer, 54, is living with long Covid. And while she’s more fortunate than other “long haulers” putting up with symptoms for up to eight months after the fact, she says chest pains that felt like a heart attack were frightening, to say the least.So was how quickly it changed her life.“Last year I was training for both a 30km walk and a four-day mountain trek,” she says.“I exercised for one to two hours each day, alternating hiking with pilates, yoga and paddle boarding.“Suddenly, I found I could only exercise at about 10 per cent of my usual rate. If I did push myself, I’d collapse in a heap for 48 hours afterwards – a classic example of what they call ‘post-exertional malaise’.“Then came the regular chest pains, which felt like a heart attack.“I feel like I’ve lost all of the strength in my body, and that I might well pass out.“The body just wants to be horizontal and still for as long as possible.”Spicer has been a journalist for 35 years and put those skills to work, researching everything she could about long Covid.Daily Telegraph – News Feed latest episodeShe also put her questions to medical experts but has been dismayed that some of the advice she received turned out to be wrong.“I read countless systemic reviews and meta-analyses of medical and scientific research into long Covid – still, I am by no means a medical professional, so I sought the advice of several doctors,” she says.“Unfortunately, most kept advising me to keep exercising, which is the worst thing to do – this merely prolongs the long Covid symptoms.“It’s best to listen to your body in these circumstances – and my body was telling me to lie on the lounge and watch Netflix.”Spicer recently met up with a family member who had previously suffered from chronic fatigue syndrome, which carries similar symptoms to long Covid.“I told her I felt like a corpse, dragging my broken body from one place to the next,” she says.“She really understood … it’s a little like a living death.“Every morning I wake up feeling utterly exhausted, despite getting a decent eight or nine hours sleep.“Up until this time, I’ve been spending each day ferrying between medical appointments, in snatches of time between work commitments.“Four blood tests, three ECGs, two emergency department visits, one cardiologist, a haematologist, an echocardiogram, and an MRI later, I was diagnosed with a bit of extra fluid around the heart, and mild post-viral pericarditis.”How Covid changed Spicer’s lifeWhile older people and those with serious medical conditions are most likely to experience lingering Covid symptoms, even young and otherwise healthy people can feel unwell for weeks to months after infection.Common signs and symptoms, like those experienced by Spicer, include fatigue, shortness of breath, persistent cough, joint pain, chest pain and headache. Sleep problems, dizziness and depression round out the stable of indicators, which according to a UK survey of people who tested positive, can be reported by up to 10 per cent of people even 12 weeks later.Experts don’t know how long it lasts, and there is no specific treatment. While NSW’s first long Covid outpatient clinic opened last week at St Vincent’s Hospital, Spicer claims there’s not enough information for sufferers to understand what it is or how to live with a condition that could end up affecting millions of Australians.“Honestly, the Australian government is really behind the eight ball on this,” she says. “There are long-Covid clinics all over the US, the UK, and many other parts of the world. Melbourne has had a long-Covid clinic for a while, and now there’s one at St Vincent’s Hospital in Sydney – Professor Greg Dore is doing terrific work there.“Having said that, we are extremely fortunate to have a strong public health system in this country.“During my first – and free – appointment with Prof Dore, he said he’d seen many people with similar symptoms.“He told me to stop exercising immediately – we urgently need public health and information campaigns, because this will end up affecting millions of Australians.“It’s incredibly hard to find proper, robust advice on what to do.”Today, Spicer manages to work in one to three-hour slots, resting in between.Each day, she does some gentle seated yoga stretches to “oil the joints”, and says deep breathing is brilliant if you find yourself short of breath.“I’ve always had a healthy diet, but I used to drink alcohol a couple of days a week,” she explains. “Now, the body can’t handle that at all. There are no more walks with friends. Instead, we catch up by having a quiet coffee or a bite to eat, or a quick chat on the phone.“I know it sounds odd, but socialising can be exhausting – things really have changed.“The family has been wonderful, taking care of me and doing all of the household chores. We usually split it up between us, but I can’t manage to do anything at the moment.“I really feel for people living alone, without such support.“To others going through this, I say listen to your body – you’re not going crazy. There are plenty of other people feeling exactly the same way.“If you feel chest pains, go immediately to an emergency department. Try to relax as much as possible, whether it’s by reading, doing gentle gardening, or arts and crafts.“Do one thing each day that makes your heart sing: listening to music, meditating, or watching a gripping series on Netflix.“Contact friends, who might not know how to help – maybe they could cook a meal and drop it on your doorstep.”Damaging effects of long CovidIt is estimated that anywhere from 10 to 30 per cent of patients might experience long Covid after recovering – even if they weren’t very sick in the first place. Recently, a team of researchers and clinicians from UNSW Sydney’s Kirby Institute and St Vincent’s Hospital Sydney uncovered an immune profile for long Covid, potentially paving the way for tailored treatment for those with ongoing symptoms.Their research has shown unvaccinated people with long Covid – even those whose initial infection was mild – have a sustained response for at least eight months following their infection.Researchers analysed multiple samples from 62 patients diagnosed with Covid between April and July 2020. Patient samples were analysed at three, four and eight months after initial infection, and compared with control groups.Dr David Darley from St Vincent’s Hospital, who was co-lead author on the paper, says they are hopeful that with a milder variant and Australia’s high vaccination rates, we may see less long Covid.“We are currently looking at some data from the Delta wave to understand whether vaccination may reduce the possibility of long Covid,” Darley says.Recent research has also found that people who have contracted long Covid are at an increased risk of developing type 2 diabetes within a year. Researchers reviewed the medical records of army veterans in the US where they looked at more than 180,000 people who developed Covid from March 2020 until September 2021.The group was then compared with millions of veterans who did not have the infection, and found that people diagnosed with Covid were 46 per cent more likely to develop type 2 diabetes.Dr Devang Sanghavi – medical director of the intensive care unit at the Mayo Clinic in Jacksonville, Florida, US – has seen about 100 patients with long Covid, many of whom take weeks to recover.He says cases are lower in children and women are affected more than men – and no one should be suffering in silence.“If you have long Covid symptoms, you should seek care,” he says. “What is reassuring is that patients who were vaccinated, in those rare instances where they got a breakthrough infection those patients are 50 per cent less likely to develop long Covid.“The other thing that everyone should know is that they are not alone in this.“There are millions of others like them who are suffering and have similar symptoms.“The key is forming support groups and using technology to fight this thing together.”

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