Published: Just now
For 33-year-old Emma, the corona pandemic was the start of a completely new life – that of post-covid.
From having been an active and social person, she now struggles to cope with everyday life.
– I feel like a 90-year-old as the only hobby I can handle today is knitting.
Like many others, Emma, 33, fell ill with covid in March 2020. The disease started as a severe cold that never really subsided.
– At first I wasn’t so worried about myself, but more annoyed about being sick and not being able to go to work. Then I had trouble breathing, had a fever and felt really nauseous, but it was when the cold symptoms started to ease and I sat down at the work computer that my whole head started spinning.
Emma describes how a simple everyday thing, like having coffee with a friend, caused her to have to interrupt after a while to go home and rest.
– I got dizzy and it felt like my whole brain shut down. It was like the brain was boiling over. Since then, I’ve never gotten really good.
Fever for six months
Emma tells how she had a fever every day for over six months, and how she still has a slightly elevated body temperature.
– It’s like something is wrong with my body.
She tells how she initially ended up in primary care, where there was a lack of knowledge about post-covid.
– I felt really bad all summer 2020. I got fever, chest pains and dizziness from such simple things as just trying to watch a movie. It was like a merry-go-round. All of a sudden your body doesn’t work the way you’re used to and it takes time before you realize your limitations. The head simply does not hang with the body.
Emma tells us that, among other things, she has been diagnosed with POTS, postural orthostatic tachycardia syndrome, which involves a dysfunction in the autonomic nervous system.
– I feel that I am lucky to live in Stockholm, where there is specialized post-cdovid care that has time to follow the research and can start symptom-relieving treatment.
At the same time, she points out that her everyday life is very limited.
– I struggle with working part-time from home, but as soon as I get an infection I get much worse. I recently had a serious infection with a 40 degree fever, and since then I’ve been worse again.
“Much is impossible today”
Emma tells how, in connection with her illness, she was in a very good place in life and in her career. Today, she works part-time, thanks to an understanding employer who allows her to work from home.
– I have really struggled to keep a foot on the labor market, and have been lucky to have an understanding employer and friends. Before I got sick, I was at full speed. I was really passionate about my job, had a lot of social contacts and loved going to concerts and dancing. Much of it is impossible today. I feel like a 90-year-old as the only hobby I can do today is knitting.
– I am a person who does quite a lot on will, but it is tiring when you constantly exceed your energy limit. It’s like working with a constant flu. You can handle it for a while but not in the long run. If I meet a friend or go into the office one day, it requires me to take the next day off to recover.
What is the biggest difference in how you feel now, compared to before you got sick?
– You get to know your new body. I know that some who are sick with this can have periods where they feel better and worse. For me, though, it’s pretty flat-out bad, and on the low end there are degrees of hell. The smallest thing takes energy, a care visit, showering or cooking.
– I am approaching a thousand days of illness. At the same time, I am a person who partly does not want to give up and is keen to find new ways based on these new conditions. But at the same time, I don’t want it to be like this for the rest of my life.
How do you think about the number of cases now increasing, and thus also the risk of more long-term patients?
– I did not belong to a risk group, but was a healthy person, but I was still affected by this. Although vaccines reduce the risk of post-covid, they do not eliminate it. And the pandemic is not over yet. The spread of infection is still ongoing, and thus the risk of more people becoming ill with long-term symptoms increases. Therefore, it is important that we learn effectively and find a cure.
A shadow of themselves
– I think about the social costs that this otherwise entails, with many competent colleagues who may never have returned to work after the pandemic, or are now just a shadow of themselves.
How do you feel you have been treated?
– My biggest criticism is that there is a lack of structures to effectively manage post-covid in Sweden. Healthcare is a culvert system, where we easily end up between the seats. I think that a national knowledge center should be established that is responsible for following the research and spreading knowledge about post-covid in healthcare. If research progresses, maybe we can get healthy.
Are you afraid of setbacks?
– I have come to know my disability quite well, and know within what limits I can stay without getting worse. It is of course annoying that the body stops and to have to live such a small life. But within that framework, I don’t sit and think about my symptoms every day.
– You can’t take it when you feel the way I do. I try to focus on what I can still do, more than how I feel.