Into the unknown One woman’s battle with long Covid
Karina Ormsby loved her sport, loved her job, loved being active. Now she lives in a fog of fatigue, with no way of knowing whether it will lift, writes
Karina Ormsby was at the Mount yesterday, supporting friends doing the women’s tri at Pilot Bay. Ormsby’s done it herself plenty of times.
She’s also done marathons, halfmarathons, the 59k run from Kuratau to Taupō. A couple of corporate boxing bouts (loved the camaraderie, won one, lost one, hung up the gloves). Just over a year ago she did the inaugural Ironmāori Toa triathlon.
Not now though. Those days are behind her, maybe for some time to come. Ormsby, hard worker, athlete, extrovert, all-round active person, has long Covid.
These days she is measuring out her days, not in work, social appointments and training sessions, but in spoons.
In among the long-covid morass, with its plethora of pills, none of which actually treats the condition, spoon theory offers a coping mechanism.
It goes something like this. You wake in the morning and work out how many spoons you have for the day, depending on your fatigue level. You then match those spoons with tasks you might have lined up.
Vacuuming, two spoons; hanging out the washing, two spoons; taking a shower, four spoons. So, will you hang out the washing or have a shower?
Ormsby doesn’t have many spoons today, after the exertion of supporting her friends at the Mount yesterday. That wiped her out – she got home around lunchtime, went to bed and slept for four hours, got up and had a bite to eat, went back to bed and slept the night.
She thought about pushing this interview back a day, but cancelled a doctor’s appointment instead, knowing there was no way she could cope with both.
Ormsby, 46, is the face of a pandemic that is grimly enduring. Last Wednesday, marked four years since the first Covid case was reported in New Zealand. No-one knew where this was heading. No-one knew what toll it might take. New Zealand scrambled, using lockdowns to try to eliminate the disease. Everything was turned upside down.
But a vaccine arrived, quicker than seemed possible, public health measures restricted its spread and, to cut a very long story very short, in September 2022, the government declared an end to measures such as household contacts isolating and vaccine mandates. In August last year, the final mandated measures – seven-day isolation period and masks in health settings – ended.
For some, however, this is a virus seemingly without end.
Estimates vary, but there could be 50,000 New Zealanders with long Covid. Impact varies as well. Some are bedbound. It is not quite that bad for Karina Ormsby, but this has been a dark time.
On a sunny morning in Ormsby’s Hamilton home, nothing in her demeanour gives it away. She is, above all, a cheery person, tall, with an athlete’s robust build and a ready laugh. She says she gets the brain fog associated with the condition, but you really wouldn’t know it.
Her family knows. Her husband, Myles, and their teenage daughters, Riley and Tayla, have seen the toll it has taken. The last thing to go was her job. Her last day at work is one of two key dates she can rattle off without thinking. December 22, two months ago, was when she left the role she loved as allied health co-ordinator at Atawhai Assisi rest home.
And May 28, 2022, is the date she got Covid despite being vaccinated, probably from a 50th birthday party she and Myles attended. It hit her hard, not the sore throat and cough, despite being an asthmatic, but massive headaches and fatigue.
Two weeks in bed, followed by almost two years of exhaustion. Her blood pressure’s been all over the show, and she’s had chest pain. A cardiologist found nothing wrong with her heart, but her lungs have taken a beating.
For the first eight months it was “sort of” manageable. That was when she was training for the Ironmāori in Napier in December 2022. When it came to the run section, she walked, but she made it. “In hindsight, I think maybe I shouldn’t have done that.”
Ormsby had learnt on August 9, 2022, that she had long Covid. There’s no specific blood test, but there’s a cluster of symptoms, with diagnosis involving eliminating other possible illnesses. Her chest pain was worse back then and the diagnosis came as no surprise.
“I think I already had an inkling that that was the case. And I suppose at that stage I didn’t really know what it meant,” she says. “The biggest thing was, I just thought it would be [that] there was something wrong, and we’d better fix it and I’d be OK again.
“But there’s nothing wrong. It’s just, something’s wrong.”
Long Covid is closely related to ME/ CFS, often known as ME or chronic fatigue syndrome.
Otago University biochemistry emeritus professor Warren Tate knows the disease’s impact better than most. He has an adult daughter with the condition, which she developed in 1990 as a 14-yearold.
Almost 35 years later, she still lives with the illness and Tate is proud of her achievements, including a degree and a postgrad diploma. “She gets fulfilment out of most days. And she’s had a very constructive life.”
He also has 12 years’ experience as a researcher. Sometimes those newly diagnosed with long Covid seek him out, and he tells them not to focus on feeling they have to cure themselves, because the stress from that is counterproductive. It’s better to rest and give the body a chance to heal.
“The emphasis should be on, how could I manage this condition, so I can have a better quality of life, and have fulfilment out of it?”
It is a sobering thought that 95% of those who contract chronic fatigue syndrome will have it lifelong. Tate says there are likely to be 30,000 people living with the condition in New Zealand.
Women tend to develop the condition at four or five times the rate of men, and there is also a group who, like his daughter, develop it young. But it can hit anyone.
Tate says researchers have found a person’s health history, such as how long it took to recover from a stressful event or childhood disease, may affect susceptibility. There can also be a genetic predisposition – sometimes more than
one person from a family comes down with long Covid or ME/CFS. With Covid, worldwide 10% go on to experience long Covid, about a quarter of whom are likely to recover within the first year.
When Ormsby really got smacked was a Waitangi Weekend open water swim last year in Taranaki. She did the swim fine, but when she got home it hit her. “It was like a switch went off and I was just exhausted.”
The most Ormsby can do now is the 5km parkrun, which she walks in an hour maybe a couple of times a month. She is director of Hamilton Lake parkrun, but even had to step back from that for a couple of months, when anxiety hit.
“I feel like my body doesn’t know what it’s supposed to do anymore. I feel like my heart doesn’t know what it’s supposed to do anymore. My brain doesn’t know what it’s supposed to do. And so every little thing sends me into overdrive.”
She clung as long as she could to her job, even offering to go part time, but would be exhausted by the end of each day and finally had to finish up.
There’s a minor historical irony to the job – the Matangi rest home was one of the first to have a Covid outbreak among its residents, in March 2020.
Ormsby worked through the lockdown as a caregiver, PPE gear proving its worth. Staff had to isolate, and with Myles also working in an essential service, she quit the family home for the duration.
Neighbours across the street had put their house on the market and moved out; they agreed to let Ormsby stay. From a first-floor vantage point, she could see her family going about their lives. Her daughter would sometimes cross the street to leave a meal for Ormsby once she returned from shift work.
An “overly empathic person”, Ormsby still visits some of the rest-home residents, and gets library books for two of them.
She says her GP, Mark Taylor, has told her she’s the worst-affected person he has seen.
Taylor, whom Ormsby gives permission to discuss her case with the Waikato Times, says she has done amazingly well to keep going with everything she’s done.
“It’s really challenging mentally to go from a fully functioning person to someone who is not, and for something you can’t see,” he says. “With long Covid, no-one can see it and so, a) people can think you’re a bit of a malingerer and, b) you can think that people think you’re a bit of a malingerer.”
Those people should meet Karina Ormsby.
Tate says too often ME/CFS patients are put in the “default” psychological or psychiatric box. The condition has suffered from a lack of research funding, he says.
As long Covid has arrived in a wave at high numbers, research funding has started to pour in, potentially bringing diagnostic tests and possibly even treatment closer for both conditions.
Essentially, they are illnesses in which the immune system is disrupted. Instead of just reacting to an invading virus for 10 days or so, it stays in a chronic activated form, Tate says. “The brain has sensing neurons, and it senses that. So the whole thing gets switched to the brain, and the brain essentially responds as though there’s a danger.”
A vicious cycle kicks in.
Tate is hopeful there will be a molecular ‘Therediagnostic test within the next five years. There are also trials on therapeutic treat-ments. There is a promising upcoming trial on an anti-inflammatory drug coupled with a drug that activates the vagus nerve. “We can look with some optimism towards the future, but [there’s] a long way to go yet on therapies.”
That is down the track. Tate has three immediate wishes.
He wants to see medical schools offering substantive teaching on the illnesses and wants the Health Ministry to send out clinical guidelines developed by top US clinicians for best management practice. He would also like to see the diseases classified as disabilities, which would help people access more services.
Taylor says the Healthpathways online manual gives good clinical advice on chronic fatigue. He says people with long Covid are mostly managed in primary care, and physicians are basing their management on what they know of chronic fatigue syndrome.
That includes the likes of reducing stress, eating healthily and looking at how to minimise medications.
“I think the art is to try and push yourself gently. If you’ve pushed too hard, then you go over the top, and pay for it with fatigue very quickly. And that’s a very, very fine line,” he says.
But most with chronic fatigue syndrome will return to a good level of functioning over time, he says. “It doesn’t mean they make a full recovery, but they’ve learned to live their life within the limits.”
That’s the hardest thing about the condition for Ormsby, accepting where she is at. “It's like a wave, I’ve had some terrible dark times where it’s like, well, what’s the point of me actually being here when I can’t do anything?”
How does she get through those times? “I love my family, and I’d never do anything to leave them without me. But I mean, it is hard.”
She’s aware that when times are dark, the advice is to talk to people about it. “But it’s so hard to when you’re in that black bubble. And you don’t want to be in this black bubble. And you don’t know why you’re in this black bubble. How do you talk to people about that?”
When she stopped work she told her GP she wasn’t in a good space. He referred her to counselling, but she says she was rejected because she wasn’t bad enough.
In the scheme of things, however, she says she’s luckier than those who are bedridden. “I don’t think I would cope if I was that bad.”
She doesn’t know how single parents with young kids do it, struggling to get on a sickness benefit, and sometimes even to get a diagnosis. In her own case, she discovered long Covid isn’t enough in itself to trigger her income protection insurance.
But today the sun is shining and Ormsby is spring cleaning. It’s a slow job, considering how many spoons it takes. Outside, the raised gardens are bursting with vegetables and berries, while apples are ripening on the tree. A pumpkin plant is scrambling exuberantly over two walls, with no regard for boundaries.
She has been enjoying spending time in the garden, and has been able to give surplus produce to friends.
“I’ll decide what we’re having for dinner, and I’ll go grocery shopping out in the garden.”
The longer term is far less certain. There has been talk in a long Covid Facebook group she has joined about how some people feel a lot better after two years.
“I’m hanging out. What are we – February, March, April, May. I’ve got three more months,” she says with a laugh.
“That would be amazing.” She pauses. “But yeah, I don’t know. I don’t know.”