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A world forever transformed: Life with Long COVID | Health

In the Before Times, Meg St-Esprit is said to have defined herself as “excessively extroverted”. The mother of four under the age of 10 and freelance journalist based in Pittsburgh, Pa., Was the type of person who never really stopped moving. But that was before. Before COVID, yes, but, more specifically, before his own case of COVID. Meg fell with the sometimes deadly virus almost exactly a year ago, just before Thanksgiving, 2020.

COVID is a virus of vicissitudes. For some, the experience is minor, painless, barely noticeable. For others, it is like the flu, but on steroids. Countless more people – in the United States, 775,000 at the last count – have lost their lives to a disease that scientists are learning more about every day. For Meg, who developed a secondary syndrome known as Long COVID, the road to recovery has been difficult and overwhelming.

Although it’s difficult to trace, she believes she accidentally contracted COVID last November from her mother, who had been unintentionally exposed and who was helping with child care. From there, the virus spread to Meg; her four children, Eli, Naomi, Ezra and Naarah (one of whom, Eli, who struggles with asthma, suffered the most); then, the last days of quarantine, to her husband, Josh. In total, his home was quarantined for almost a month.

As her family began to recover, Meg noticed something curious: she didn’t seem to be recovering. “We were all in such a similar timeline,” she said. “Now my mother was driving a car again. During this time, she struggled with basic ambulatory tasks, like climbing the stairs.

The alarm bells did not ring until a few weeks later. In mid-December, COVID-free and hungry for fun, Meg took her kids to the Carnegie Science Center in Pittsburgh. “It has this big, spiraling ramp between floors,” surrounding a large space capsule, she said. That’s when Meg, normally fit and well a month old, ran into a problem. “I couldn’t climb the ramp,” she said. At the summit, his heart rate continued to skyrocket, even after a few minutes of rest. Then she realized she was facing a different complication.

A follow-up visit to the doctor revealed a series of life-threatening issues. His hemoglobin – the iron transport protein found in red blood cells – was 4 grams per deciliter; anything below 12 in an adult female denotes significant anemia. More dangerous was a swollen arm that masked incipient blood clots. She was admitted to hospital, where she stayed for a good part of a week. “I couldn’t see my children, no one could come to see me,” she said. “They gave me a lot of units of blood, a lot of iron. And then they must have put me on heparin for a long time, and that means they have to take your blood every two hours.

That was over a year ago, but Meg’s medical issues haven’t gone away. The anemia and the threat of blood clots persist, and she is still on medication and has regular ultrasounds of her major veins every two months to monitor her bleeding problems. She also developed myocarditis, an inflammation of the heart muscle often linked to a viral infection.

But one of the most life-changing lingering effects of COVID, which Meg still fights on a daily basis, is the so-called brain fog. An October neurological study, published by JAMA Network, confirmed that some patients recovering from COVID are likely to have cognitive impairment for months after the virus resolves. These impairments include attention deficit, memory recall, word recall, and category fluency. “In this study,” wrote Jacqueline H. Becker, PhD, Jenny J. Lin, MD, MPH and Molly Doernberg, MPH, “we found a relatively high frequency of cognitive impairment several months after patients contracted COVID- 19. “

But some patients experience these types of COVID-related issues a year or more after contracting the virus. Understanding of COVID is constantly evolving. The same goes for understanding the duration and persistence of these sequelae for those who suffer from them.

Meg describes her brain fog in the same way one might the early stages of age-related cognitive decline. She sometimes has trouble finding the right words, a handicap in her writing profession. Tasks that came easily before are more of a challenge now. Its volume of work has diminished. She has accepted, she estimates, 40 to 50% fewer assignments this year, a reduction in the workload which has had an impact on the financial solvency of her family. A piece she’s been working on for months for a major national publication – a data-driven piece requiring in-depth reporting – has suffered delays. “It’s so taxing mentally,” she said of this type of work.

[Jawahir Al-Naimi/Al Jazeera]

Long-term studies of Long COVID don’t yet exist, which means Meg and others like her – she participates in online forums that connect people with the disease – don’t have a precise answer as to whether when (or if) the symptoms will go away. Meg has only recently started to view her condition as a chronic illness. “My friend, who is chronically ill, told me something,” she said. “Now that you are struggling with a chronic illness, you just have to learn that on certain days you don’t have the spoons to do everything you need to do. Meg didn’t think of herself as a chronic illness. But then her friend brought up a salient point. “She said, ‘You’ve been sick for over a year.’ And it’s really hard to accept.

Meg is now struggling with the idea that her condition may be permanent. “Is it going to be forever?” Will it clear up? Will they find out? she was surprised. “They signed me up for the Long COVID Clinic, but it really looks like they’re just trying to gather information more than just problem solving.” This joint may be the most important when it comes to this condition – a condition that, according to a recent study by Penn State College of Medicine – affects more than half of people diagnosed with COVID-19. There isn’t necessarily an end in sight for some of these less tangible conditions, conditions that affect the way patients communicate, express themselves and go about their day-to-day lives.

And beyond impacting the ability to make a living in a profession steeped in cognition, Meg has found that Long COVID has reshaped the landscape of her social and family life. Its capacity, she noted, is diminished. A memory on social media recently reminded her of a night not too long ago when she took the bus into town, saw a play, and went out for a drink with a friend. The idea of ​​a similar social gathering today, in the aftermath of the virus, seems untenable, she said. “I thought to myself, this sounds overwhelming and exhausting,” she said. “I wouldn’t want to do this now.”

This feeling of exhaustion also permeated her daily life. COVID had previously revealed a fragile reality for American mothers, many of whom have left the workforce en masse (a 2020 Census Bureau report found that about 3.5 million women with school-aged children have left the workforce. the labor market at the start of the pandemic). Meg, who home-schooled her children for most of 2020 and 2021, has taken on multiple roles: parent, teacher, full-time babysitter. With a new set of health-related circumstances added to the mix, parenthood has become an unintentional minefield of emotions.

One recent evening, she returned home full of children after an iron infusion, one of the medical procedures she now needs on a regular basis. Her 8 year old daughter was holding a library book. “She asked me what the title page of this book said,” Meg said, but she didn’t have the bandwidth to offer an answer. Instead, she lost her temper. Meg, whose children are adopted, is putting pressure on herself, she said, to play the role of parent. “They [their birth parents] chose me to be their mom. I have to be the best mom I can be. And then, just feeling myself breaking down to do basic things sometimes… I feel like I’m letting them down on what they deserve.

Such is the thickness of Long COVID, a set of diseases with no clear resolution. For Meg, it’s a burden, tied to no definite moment in time. She can tell you when it started, of course, but not when it will end. Some days she feels angry – angry that her caution about COVID has resulted in illness anyway, angry that the vaccines came too late, angry that others in her life haven’t taken pandemic as seriously as they should be.

There is also a vulnerability to the aftershock of Long COVID, to suffering from an illness that shows up on medical records as a specter. It’s here? Can we prove it? Long COVID’s symptoms are amorphous, its timeline indistinct. There is no scientific explanation as to why some can develop it while others cannot. (For her part, Meg had no risk factors associated with a severe manifestation of the virus.)

What remains, she says, is a world transformed forever, a world where she wonders if she should stop trying so hard. This is his new reality, formed from a virus, a moment, a November a year ago. “I think a lot of parts of it will be under control,” she said of Long COVID. “But the fog and the word search… I really wonder if that will ever get better.”

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