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That’s one of the things I hear first from people: “You look good, do you probably feel better?” But there is a lesson behind all this.
As a journalist, I have produced news and documentaries about people who suffer from chronic pain. And the question arose, how to convey their suffering through the camera so that viewers would feel empathy for someone who is essentially invisible?
The answer is to tell the story in your own words. Give voice to your pain.
Lucy Adams with COVID-19 for 7 months
© Photo from personal album
It is more convenient for me to tell other people’s stories, but now I have to tell my own because I feel the need to explain what that “long COVID-19” is like.
My brochure says “Viral fatigue after COVID-19 infection.” It’s painfully obvious to me, but others can’t understand how it has affected me in those months.
How it all started
Like thousands of people in the UK, I experienced the symptoms of COVID-19 in mid-March.
I was in my early fifties and fairly healthy and active, but the disease hit me hard. His joints and head ached, his throat burned, and his head went numb. But I was able to lie on the bedroom floor and teach the kids about cheetahs or things like that.
It was an attempt at home teaching, often leading to falling asleep. I was able to walk around the neighborhood with the kids outside, but then I slept through the afternoon.
After a week, the temperature jumped from 37.7 ° C to 39.4 ° C and stayed that way for 10 days. My back ached agonizingly. In the case of her seven-year-old older daughter, the fever developed at the same time, but for the most part she felt tired and her younger sister warmed up one day and recovered. My husband had no symptoms.
The disease did not leave me. I could not sleep. Nausea and stomach pain terribly. He was constantly sweating and shaking. I couldn’t get up, but laying down was a pain. I desperately wanted to be tested, but there was no testing outside the hospital at the start of the pandemic.
My daughter and I had a rash and lost our taste and smell.
Then there was a shortage of air. Initially, going up the stairs. So, even when lying in bed, it seemed impossible to fill the lungs with air.
I called the NHS and they advised me to stay home unless I could no longer speak or lick my lips. My daughters also started to run out of air, but then recovered.
Shame for such a disease
When I was sick for seven weeks, I remember telling my brother that I was embarrassed to leave work for so long.
According to the NHS, COVID-19 should last around a couple of weeks, but fever, heart arrhythmia, and many other symptoms are felt after two months. Then I read an article by Paul Garner, Professor of Infectious Diseases at the Liverpool School of Tropical Medicine, to the BMJ and wept with relief. He also experienced the same kaleidoscope of symptoms. Not only that, but little by little they began to feel better. He got sick at a similar time to me, so I figured I’d probably be apart for a few days from the time I recovered.
Unfortunately, he was wrong.
In another article, Professor Garner details how he fell after a long walk. He described it as a game of “snakes and ladders” and spoke of “hidden cameras with speed limits” when you don’t know what those limits are.
Psychological effects of poor health
On good days, I can take a little walk, sitting down to catch my breath. I can carry on a conversation and seem quite normal. On bad days, it seems impossible to get out of bed. The mattress looks like a ship floating on a stormy sea, his hands are shaking, the image is blurred, he has trouble breathing, his body trembles and every sound shakes his head like shards of glass.
I have not experienced anything like this even though I have had malaria. In comparison, it was a walk in the park. The psychological effects of such a long-term illness are difficult to explain. It is normal to feel better and return to normal life after an illness. Maybe a couple of days or a week in bed, but that doesn’t happen.
“Times before mom got sick”
Before my illness, I was biking every day, swimming twice a week, and walking in the hills on time. Now even the slow movement through the park is exhausting.
I can still do something, but every action responds. Flushing the entire dishwasher in one go can cause migraines, so I flushed it in portions. When I come back from walking, I have to go to bed immediately. If I go too far, the temperature can rise. Dizziness, tremors, and cardiac arrhythmias develop and resolve. And that constant fatigue, and that anxiety to eat because you don’t know when it will get better.
And no one seems to know what is happening to my body.
My kids talk about “mom when my mom wasn’t sick” and they keep asking when will I recover. Asking why I can’t catch them, I can’t play ball. Why can’t I get out of bed and take them to school?
As they prepare their food, the pan falls from their shaking hands. The next day, dizzy, I bumped into them. The eight-year-old daughter still has some symptoms. He’s back in school now, but he tires quickly and his heart beats rhythmically. You can climb trees, but climbing the stairs is exhausting.
We both did complete blood tests, chest x-rays, and heart scans. They were both instructed to rest, walk, and wait, but how long? And how can I explain the step-by-step for eight years if I can’t do it myself?
What is long COVID-19?
Tim Spector, professor of genetic epidemiology at the Royal College and director of the COVID-19 symptom study app, says that some 300,000 people in the UK have reported symptoms lasting more than a month, the so-called COVID-19 long. Gadget data shows that some 60,000 people have been ill for more than three months. According to him, the more we learn about COVID-19, the “stranger it gets.”
There is growing concern about post-viral inflammation and long-term damage to organs and the cardiovascular system.
On Facebook and Slack, thousands of people from the UK and around the world have joined long-term COVID-19 support groups where mothers and fathers, sons and daughters describe the long suffering caused by symptoms such as shortness of breath, fever, cardiac arrhythmias, gastrointestinal problems, headaches. , itchy throat and chronic fatigue. Many members of these groups were previously healthy, active and did not belong to the demographic stratum to which the virus is said to pose the greatest threat.
Many are in their fourth, fifth, or sixties. There are marathon runners, cyclists and gym goers, parents talking about young children with long-term COVID-19, and students in their twenties. Many find it difficult to get support. Some tests for COVID-19 came back positive. Others, like me, got sick when the tests weren’t there yet.
For us in the Facebook Long Covid support group, this is the only place to get help.
When my hair started getting tangled in strands this summer, the other members said they had it too.
Professor Garner says that now “many patients know more than doctors” and it is time to start sharing this knowledge and ensuring adequate medical follow-up of COVID-19 patients in the long term.
No one knows how long this will last
My GP was attentive. The consultants were interested and rejected everything except COVID-19, but no one seems to know how long the symptoms will continue or how to get rid of them.
One consultant explained that even though the coronavirus is gone, my body still thinks that it is still hiding somewhere. He has become a ghost in my system, devoting all his energy every day to fighting what no longer exists. The cardiologist explained that the virus can destroy normally automatic systems: heart rate, respiration, body temperature. All the things that do not attract much attention in normal mode, although they are already quite important.
Some doctors, patients, and researchers are working to ensure that people with long-term COVID-19 receive more research and rehabilitation. The UK government and the English NHS have said they are setting up COVID-19 rehab centers and community services throughout England.
But so far there are not many such centers, and it is difficult for members of the Facebook group COVID-19 in the long term to get medical and psychological help. Many feel ignored.
The Scottish government spoke of the protracted COVID-19 “blueprint” and person-centered rehabilitation. But when I asked her GP to send her to a rehab center, she said she had never heard of anything like it.
The NHS now says it officially recognizes Covid for a long time, but even the doctors I spoke to don’t have easy access to testing, care and support. Most have to scratch.
But I was lucky. I have the support of a husband and family, I have enthusiastic children who entertain me and make great friends. And I still have a job that I can go back to.
Many others have not been so lucky. I interacted with people in Scotland and elsewhere who lost their jobs because they had COVID-19 for a long time. Others, including cleaners and care staff, feel compelled to return despite all symptoms because they work on a zero-hour contract or have used paid newsletters.
Therefore, employers and governments at all levels continue to face the serious question of how to support those with COVID-19 in the long term.
The end is not visible
I thought I could overcome this disease. Being able to get out of it by exercising, eating right, and using food additives used to always work. It turns out that this is not the case this time. And a new small-scale study shows that trying to “escape” really only makes things worse.
In January, our daughter, who was seven at the time, was so concerned that the coronavirus would reach Scotland that we showed her on the map how far away China was. We said that even if it did come, it would be like a severe cold. This prediction was extremely inaccurate.
Approximately 1.5 million people died worldwide. people. Destroyed families.
Everyone gets used to the new reality.
With the growing number of long-term COVID-19 patients, it seems important to change the narrative of viral mortality. There are thousands of long-term effects that are not over yet.
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