- Lucy Adams
- BBC reporter
I am 44 years old. In my heart, I am a journalist, mother, wife, and bicycle enthusiast. I like swimming, climbing and exploring in the wild, just like I did 16 months ago.
But my body is like an old man in his 80s.
Most days, I wake up from pain and go to sleep with the pain. I suffer from dizziness, migraines and blurred vision, and my joint pain is unbearable.
Like hundreds of thousands (385,000) patients in the UK who have suffered from the new crown for more than a year, I am also one of the patients with long-term symptoms of the new crown (long-term new crown). Moreover, this number is still growing.
I was infected with the new crown in March 2020. There was no community test yet, but I had all the symptoms of COVID-19.
I was very ill and had difficulty breathing. I called the NHS 24-hour hotline of the Scottish National Health Service twice for help. But every time they told me that unless my lips turned blue, I should stay home and isolate.
My seven-year-old daughter is also ill. She seems to be recovering, but then she has been tired and has breathing problems. We don’t know how to help her, and the doctor doesn’t seem to know.
The doctor told us that recovery takes time, so we waited patiently.
By now, 16 months have passed.
New disease
The long-term symptoms of the new crown are still relatively new, and scientists are trying to figure out why it affects some people while others are okay, and how it can be cured.
There are many theories for this.
Some people think that these symptoms are caused by a live virus reactivating in the body; others think it may be an autoimmune problem-it means the body is attacking itself. There is another theory that it may be due to the immune system being not active enough, or the immune system is paralyzed after the initial virus attack.
Doctors try to divide it into different syndromes, including post-intensive care syndrome and fatigue syndrome after infection. Or, divide it according to the severity of the patient’s initial condition.
However, some people who have been hospitalized due to the new crown have recovered, while some who have remained in the community but have not been hospitalized have found serious health problems, including organ damage.
We know that women are more susceptible to the long-term symptoms of COVID-19 than men. Hundreds of thousands of long-term COVID-19 patients in the UK were young, vigorous and healthy before the onset of the disease.
According to the latest data from ONS, the British National Bureau of Statistics, there are still close to 1 million people with multiple symptoms four weeks after being infected with the new crown.
What I want to know most is what and how to make these symptoms disappear completely.
Barely maintain
Eight months ago, I wrote an article about how long a new crown makes me exhausted. In November 2020, I have a good day and a bad day. Later it developed into a good week and a bad week. I am just surviving, with a feeling of being barely maintained.
I often lie in a dark room by myself, because I can’t stand the noise of family life, and light-any light-is too bright for me.
The dark room that was supposed to be my safe haven began to feel like a prison, a place from which I could not escape; the originally comfortable and warm bed was like a boat swaying in the rough sea.
Unable to explain this sense of fear, isolation and loneliness, I am sure that I will never be able to work anymore.
I am worried that I will no longer be able to take care of the children, or find another job, home, or place in society. Illness takes up all of my life.
After I wrote a long new crown article for the BBC News website in November 2020, hundreds of people contacted me to provide support. They come from Australia, France, North America and the Netherlands.
Their messages contained comfort, greetings, and sympathy. Many people also ask me some questions for relatives and friends who are also tortured by the new crown.
I cannot reply to everyone who has contacted me, and my answer is not satisfactory, because I am not a medical expert, so I cannot provide them with answers. I can’t even say that I feel better.
Several people contacted me and told me that it would never get better and that I need to accept that it is permanent.
I couldn’t do it, so I tried different methods: restricted diet, cold water soaking, acupuncture, homeopathy, and all kinds of weird supplements.
I started going for a short walk-telling myself to stop and rest often. Sometimes, even when I am around my house, I am not sure if I have the energy to walk home. As long as there is a slight slope, I will be out of breath. And a year ago I could climb the mountain.
I am also worried that others will make irresponsible remarks. For example, they will think that I am well when they see me going for a walk.
What they can’t see is how miserable I am after walking. In fact, I will have to go directly to bed to rest, or I will probably suffer severe headaches, fever, or loss of vision later in the day.
I don’t want to accept help, but realize that I really need help. I have trouble cooking, cleaning or using the dishwasher.
Our neighbors started to cook for us twice a week, and every Monday and Thursday they would make delicious home-cooked meals for us and hand them over by the wall. Friends took the initiative to help take care of the children.
After nearly a year of illness, I realized that I have never watched a full movie on the sofa during the day, not because I don’t have a TV, but because the sofa is too far away for me most of the time. I simply don’t have the energy to watch a complete movie.
A few nights I tried to sit with my husband, but often because my hands were shaking badly, or because of headaches and vision problems, I couldn’t hold on.
But I also found a few things that really helped me. They may not help other people much, but I rely on them to survive every day.
The first is yoga. A yoga teacher I knew was training to become a yoga therapist, and I became her first long-term new crown client.
Yoga helps to alleviate my breathing problems, but it also helps me cope with the uncertainty of when I will get better. There is also acupuncture, which seems to help me cope with some symptoms. I gave up alcohol and caffeine, and took some singing lessons to help with breathing exercises.
I believe that getting better is an important part of recovery, but maintaining a positive attitude is not easy.
Comprehensive care
My family doctor transferred me to the Glasgow General Nursing Centre and Dr. Odod, who is a chronic disease specialist.
I didn’t see her until December 2020, and the only advice I got before that was to take a break. However, rest is unexpectedly difficult to achieve.
I now know that if you just take a rest and stop exercising, your health will deteriorate-which in turn will cause other problems.
Dr. Odowder explained that I should do 3 things that I like every day, and each of them should not take more than 20-30 minutes. There are 3 tasks to complete every day, and each task should also not exceed 20-30 minutes, such as taking out the washed dishes from the dishwasher.
When your task is to organize and fold up the laundry, or make dinner, but you realize that it cannot be completed within the specified time, it can be very frustrating.
However, I found it to be the most practical way to deal with symptoms. It means you have achieved a little bit and lived a little normal life.
I also participated in an 8-week mindfulness course at the center, which definitely sounded too vain to me before. I started to see the therapist. But psychologically it is really difficult to know when or whether it will get better.
I am now participating in a pilot project in Glasgow organized by Dr. Odowd. The project provides some practical advice such as sleep and diet for a small number of long-term patients with COVID-19. At the same time, we also arranged for us to meet with psychologists, physical therapists and mindfulness courses.
Epiphany
The best email I received after the publication of my last article was Ghana, a professor of infectious diseases at the Liverpool School of Tropical Medicine.
We were infected with the new crown during the same period. Professor Garner described his symptoms in an article published in the British Medical Journal (BMJ). This was a moment of epiphany for me, because no one could understand what was wrong with me before that.
We kept in touch for a long time afterwards, he helped me a lot and provided me with support.
In November 2020, he emailed me to tell me that he was much better. If he can improve, I think that means I can also get better.
Just hearing the news of his improvement gave me great encouragement. I tried to focus on the methods that can reduce the symptoms, and began to imagine the mountains that I could climb after I recovered.
My daughter has returned to school. The school staff are very supportive. She struggled to climb the stairs, and a day of school life was too long for her. Therefore, the teacher asked her to rest in the teacher’s office.
She used to like sports the most, but she gets tired easily, so she rests when she goes to physical education class.
We used to ride bicycles on weekends, but now we rest and read books.
Secondary infection
By Christmas 2020, my daughter seems to be much better. By January of this year (2021), I also feel more powerful.
My migraines are less frequent-about once every two weeks instead of once every two days. I still feel dizzy most of the time, but the joint pain has been relieved.
I don’t sound so short of breath anymore when I talk to people. I did an occupational health assessment and agreed to gradually return to work. I need to work 4 hours in the first week, and I don’t have to finish it in one day. Although it sounds rare, I am still scared.
I haven’t used a computer for 10 months. The brain fog caused by the new crown makes me unable to remember words, and it is difficult to remember things.
As part of the gradual return to work, I agreed to participate in the BBC “Wide-angle Lens” program about the long-term symptoms of the new crown.
The work of the first week was completed, and I felt extremely happy. But the next day I woke up with a fever and severe kidney pain.
I thought it was a reaction to my hyperactivity, but then I started to feel exactly the same as 11 months ago. I went for a test and received an email in the evening saying that I was infected with COVID-19 again.
I haven’t been to anywhere, not even the shops near my house. But my children are in school, and a student and a teacher won the new crown. I feel really unfair.
Fortunately, the second time was not as serious as the first time. But I have the same symptoms as the first time, but my fever is not that high, and my breathing difficulties are not that severe.
I lay in bed for another 10 days, and then I started to feel better. I am especially worried that the second time I will be sick for another 10 months like the first time. I insist on practicing yoga and mindfulness.
I know I can’t think of myself getting better, but I also understand that fear can only make symptoms worse.
Helpless and helpless
My daughter’s symptoms also recurred. She was pale and weak, and she had a new crown toe-purple and itching toes. She had difficulty breathing and was hospitalized for examination.
I feel particularly helpless. But fortunately, she likes the food in the hospital and “overnight” in the ward. The test showed that she had problems with her breathing, but the doctor asked her to do exercises every day to try to improve, this should be reversible.
Many patients with chronic Covid-19 have respiratory pattern disorders or hyperventilation syndrome (hyperventilation syndrome). But it is one of the symptoms that a physical therapist can help change.
But it was not until April this year when I met Professor Carson, a neuropsychiatrist at the University of Edinburgh, that I realized that I also had this situation.
The good news is that it can be reversed. Professor Carson explained that the hissing noise I felt in my blood vessels over the past few months was caused by excessive carbon dioxide in the blood that changed the pH.
The bad news is that I waited more than a year to get the diagnosis, and I am still waiting for the breath test he recommended for me.
One of the disadvantages of getting sick in a pandemic is that it is particularly difficult to seek medical attention. It is not difficult to understand that the NHS is very busy. Not only that, but the problem is that I have a new disease that no one knows how to treat.
My family doctor has always been very helpful, but she is not an expert on long-term COVID-19 disease. She asked me to do some basic examinations: including chest X-ray and electrocardiogram, these results were all right.
On the one hand, it’s good to have no problem, but on the other hand, I feel helpless because I still have no solution. I don’t know what went wrong and how to solve it. I feel very helpless.
At the same time, Professor Carson of the University of Edinburgh is conducting an in-depth study on the effects of long-term new crown symptoms on the brain. I was fortunate to be allowed to participate in this study. It includes hours of various clinical examinations and questions, as well as MRI scans of the brain.
Most patients with long-term symptoms of COVID-19 have brain fog, which is a memory and concentration problem for me. In addition, there is still no suitable vocabulary to express.
Many patients with brain fog are told that their symptoms are entirely anxious or the result of “imaginary”, and they express dissatisfaction and frustration with this on social media. But scientists and more and more studies have shown that brain fog is a real phenomenon, not just imagined.
Professor Carson said that (imaginatively) this statement implies that a problem without obvious physical symptoms is not considered a disease to some extent.
Professor Carson said that this “unpleasant undercurrent” in the medical world seems to mean that if you have an obvious disease in your body, it is real and worthy of attention, otherwise it is not worth mentioning. “I find it hard to bear,” he said.
Professor Carson said that he believes that if a person is in the medical profession and thinks that a certain biomarker is necessary to believe that the patient’s suffering is real and worthy of attention, then you are actually in the wrong line; separate the body from the mind Looks “ridiculous”.
He said that we need to understand that the brain is a “predictive organ that interacts with the world” and that our brain is the only organ in the body that can sense pain. It is the brain that regulates body temperature and heart rate, as well as many other functions. The long-term symptoms of the new crown seem to make all this disorder.
Like the virus itself, the long-term symptoms of the new crown have different effects on different people.
“Brain and Body”
As part of the research, Professor Carson’s patients include both those with lung scars and those with dementia on brain scans; some have clear and healthy brain scans, but they have various debilitating symptoms.
Unfortunately, the condition of a small number of patients with potential dementia has been accelerated by the new crown. Professor Carson believes that this is not a new case of dementia, but a few years ahead of the new crown.
Carson believes that a small number of elderly patients with new coronary disease have caused permanent damage to the brain during the acute attack and in some cases their “delirium”.
For many other patients-including myself-he believes that part of the reason is a malfunction in the communication between the brain and the rest of the body.
There is no problem with my brain scan. Professor Carson confirmed that I suffer from breathing pattern dysfunction and explained that it means too much carbon dioxide remains in my body.
He also said that my dizziness is actually continuous postural perception dizziness, which should ease over time, but I need to keep walking.
He said that doing yoga will help. He recommended me to take a further breath check and suggested physical therapy. He also said that my current yoga and mindfulness should be helpful.
Professor Carson said that my long-term COVID-19 symptoms should be reversible. He explained to me that although the results of my brain scan did not seem to be structurally problematic, there seemed to be some problems in the way it predicted and monitored my behavior.
Symptom improvement
In 2020, my energy is very limited. I can do more things now, but still have a cap. I still tried to do more, but every time I was reminded of my illness and had to stop.
To some people, these symptoms may not sound so scary. A headache for a day may be annoying, but headaches and joint pains for several months are difficult to deal with.
There is also constant worry about whether you will be able to work normally again; whether you can go to the park to run with the children or hold them above your head to play; whether you can cook for them without feeling dizzy and feel as if you are giving 100 People cook instead of just cooking for 4 people.
The time has come to July 2021, and I have been able to watch a whole movie, but on the condition that I did not do much other things that day.
I can ride a bike for short distances on flat ground. I even paddled for a while. I plan to go on vacation with my family and will try to swim in the sea. But I have to weigh everything.
For example, I either work; or walk; or play with my children, but I can’t do all of them. I have to rest in between.
For me, life has not returned to normal, and it has not returned to the way it was before contracting the new crown. Many places in the UK are back to normal, but I still have a long way to go.
I have already received two shots of the new crown vaccine, and I am still very nervous and do not want to be infected again three times. Perhaps I am more worried that this pain and fatigue will continue.
But on the other hand, I know that many people have recovered from the long-term symptoms of the new crown, and I need to firmly believe that I will also recover.
I’m much better. It took me several months to write an article in the fall of 2020 when I was suffering from long-term symptoms of COVID-19 for 7 months. The whole article was written by me lying on the bed and tapping on the phone with one finger.
When I started writing this article at the beginning of this year, my hands were trembling and I couldn’t type. I can now sit up, work, and go out to shoot the “Wide Angle Lens” show. If there is no obvious improvement, I would not consider agreeing to make this documentary.
But I must also admit that it is difficult to go to work after being sick, and it is also very uncomfortable to let my family and me become the center of the documentary. I prefer to write other people’s stories.
It is touching to hear the stories of many other patients, and it is also fascinating to interview some leading scientists who study the long-term symptoms of the new crown.
People all over the UK and even the world are investing a lot of research on this new disease. But so far there are far more questions than answers-about its causes, how to diagnose and how to treat it.
It is becoming more and more obvious to me that it is almost impossible to defeat it by yourself. People need help from friends and family. But it also requires correct examinations and medical support.
The long-term symptoms of COVID-19 affect different people in different ways.
The experts we interviewed on the show said that we need to ensure that people receive the correct treatment and examinations so that we know who has underlying heart or organ damage; who has respiratory pattern dysfunction and needs specialist physical therapy?
I am gradually recovering. I can do more and I am not as exhausted afterwards as I used to be. But I still have a long way to go before I get back to my normal state.
I firmly believe that I am a bold adventurer, mother, wife and journalist, even though I can’t climb the mountain yet, I can only dream.