Lene (49) has been ill for two years – but now there is hope

Most of us have put the corona pandemic behind us.

Many have said goodbye to measures and staying at home, and are happy that life is back to normal.

But for others, the virus is still a big part of everyday life. The healthy and active life is put on hold. Maybe forever.

– Here it is still the corona that decides. It decides everything. It is terrifying and a great sadness to have lost so much of my life.

She is one of many affected by long covid. Ever since she was admitted with pneumonia after corona, in the autumn of 2020, she has struggled with exhaustion, breathing difficulties and severe cognitive impairment.

– First of all, it is a shame. The fact that I can’t get things done. And then I feel a great longing, both for training, reading and writing, says Rygh.

Can’t bear to exercise or read

Lene Rygh had an active and contented life before corona.

– I have always trained a lot, danced, and I walked close to a mile every day before I got sick, she says.

She loved to read and write, and was an important resource at work, as an environmental therapist for children.

– I have always been good with language and words. I could sit in meetings and just listen, and then write a good report afterwards.

Now it’s an effort just to walk those two dogs, Elliot and Bram. She doesn’t have the energy to read books anymore.

Lene Rygh already had the muscle pain disease fibromyalgia when she got corona. The symptoms have several features in common with long covid. But Rygh is determined that she is much worse now.

– Some symptoms have gotten worse, and some are completely new. Now the pain is more or less constant. And the brain fog is much worse, she says.

Have to sell the childhood home

Rygh has also had to quit his permanent job. She is on employment verification allowance and is only at work occasionally, in an assignment position.

– That means I have to sell my childhood home, which I managed to get. The loan will be too large, she says.

She is about to lose the small network of friends and acquaintances in Bærum.

Rygh says that it is not only physical effort that affects her form.

– If I push myself physically I get worse, but I also can’t stand a lot of light or sound. Going to the mall is almost impossible.

She struggles a lot with brain fog and memory loss.

– I remember standing at the Post Office and about to send a package. And then I wanted an alcohol marker, but I just couldn’t find that word. My head was completely empty, says the 49-year-old.

The disease also affects social life. Just meeting friends wears Rygh out.

– It is also very frustrating for those around me that I do not remember. They can tell me things that are important to them, but then it just goes in one ear and out the other. It doesn’t stick at all.

– I feel I have lost part of my identity. A part of myself, Rygh says despairingly.

– Public health problem

17 million people in Europe had symptoms of long covid during the first two years of the pandemic, according to the World Health Organization.

The symptoms are many. Fatigue, impaired memory, headaches, loss of taste and smell, muscle pain, dizziness, depression and “brain fog” are among what people report.

It is unclear how widespread long covid is in Norway, states FHI.

It is also difficult to prove that such ailments are caused by covid-19, or something else.

– NAV has previously reported that there was an increase in doctor-reported long-term sick leave during the pandemic. We are trying to find out how many of these sick reports may apply to people who have late effects after covid-19, says research manager Signe Flottorp at FHI.

Doctor and leader of the major Corona study, Arne Søraas, nevertheless believes that long covid is about to become a public health problem.

– This will probably be the biggest new chronic disease this decade, he says.

One of the biggest challenges is treating the disease. Long covid affects people to very different degrees.

Lene Rygh is frustrated, and believes that the healthcare system does not take the disorder seriously.

– I think it is quite provocative that it is labeled as something psychological, just because the doctors can’t find anything on the test results.

She agrees that long covid is a public health problem, and believes the authorities must work harder to actually find a cure or treatment.

– I wish they used at least half the energy and funds they used to stop the pandemic. After all, they have canceled it, despite the fact that people still get sick, and get long covid.

Norwegian research gives hope

There has been a little hope for those with late effects after corona disease.

A unique research project is to be implemented at Lovisenberg Hospital in Oslo.

The researchers will test methods that have shown positive effects in people who struggle with cognitive difficulties due to depression, ADHD or more serious brain damage.

So-called brain training.

– Patients say that they have experienced improved cognitive functioning in everyday life. Many say they get more done. They achieve more goals and remember more. They also have improved attention, says Jan Stubberud, associate professor at the Department of Psychology at UiO.

He has faith that even those with long covid can manage to get better cognitive function.

The researchers will now recruit 240 patients with chronic covid. Through the project, the patients will learn to identify what kind of cognitive challenges they have, and train their brains to cope with them.

– We are very optimistic. These are techniques we strongly believe in for this patient group. Similar studies have never been done either nationally or internationally, says Jan Stubberud.

Rygh thinks the project sounds exciting. She dreams of being able to read books again, and would like to participate.

– I strongly believe that the brain can fix a lot. If it is possible to restore something to improve cognitive function, then I am absolutely in favor of it, she says.

At the same time, she believes the researchers must take into account that the project can be a strain.

– They must have respect for the fact that pushing oneself cognitively can knock the patients out physically. I notice that very much, she says.

She emphasizes that mental training is only part of the problem. For Rygh, and thousands of other Norwegians, the physical ailments are just as bad, if not worse.