Long Covid can be a very restrictive illness in everyday life - but how do you live with it? As part of our app development, we spoke to many affected people, including Vanessa. Find out here how she coped and continues to cope with Long Covid in everyday life.

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Our interview partner

We met Vanessa — she is in her mid-twenties and has been suffering from Long Covid for almost a year and a half. She spoke to us about her illness. How is life with Long Covid? What restrictions and hurdles do you have to overcome in everyday life? We will get to the bottom of all these questions in this blog post.

But first: What was Vanessa's initial situation?

She had Covid-19 in November 2020, and 2-3 months later she was still not feeling well, she was permanently tired. She was then diagnosed with Long Covid in April 2021.

Vanessa used to be a social worker, traveling a lot, active in sports, and still a cheerleading trainer in her free time. However, at the time of our conversation in February 2022, she had already been unable to work for a year. She also had to stop her other leisure activities. Her Long Covid symptoms made it difficult for her to continue functioning in everyday life.

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symptoms

At the time of our conversation, Vanessa was struggling with a whole range of symptoms. One of them, which Vanessa described as “rather permanent,” was fatigue. Fatigue is a serious form of chronic exhaustion and is common with Long Covid, but also with other symptoms.

“But it's not as bad as others,” she said, “so I don't have as many crashes, for example.”
A crash is the colloquial term for the so-called post-exertional malaise, or PEM for short. PEM is a stress response that occurs approximately 24-72 hours after the triggering event and is out of proportion to the previous activity. After supposedly “simple” activities such as showering or shopping, those affected then sometimes have to spend days in bed until the symptoms subside.

As the conversation progressed, it came out that although Vanessa said she was “not as badly affected by crashes as others,” her fatigue sometimes affects her more than usual for 1-2 days. In the beginning, she also often had to deal with a high heart rate, which was also out of proportion to physical activity. “But that's better now,” she said.

What really bothered her, however, was sleep problems as well as muscle and nerve pain, which Vanessa described to us as a “feeling of heaviness in the right half of her body.” They also limited cognitive symptoms such as memory and concentration problems in everyday life: “Sometimes I'm so unstructured,” she explained, “and from time to time I have speech problems when I'm stressed. ”

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What does everyday life look like with Long Covid?

“There are good days and bad days,” says Vanessa.

If the fatigue is severe, she has to lie down a lot, do nothing, not think, not move much, preferably over several hours. “In general, the symptoms get worse when I'm busy or when I'm overwhelmed,” she explained to us. What helps her is a clear everyday structure with lots of breaks. It is particularly important to alternate between breaks and activity. Lying too much isn't good for her either. The challenge is therefore to find a good mediocrity.

This is where the keyword pacing comes in — pacing is one of the non-drug treatment options for long Covid. We'll go into more detail about this elsewhere (we'll link to the corresponding post at the end of this blog article). Roughly speaking, pacing means that those affected learn to understand their own physical, cognitive and emotional load limits and to move within these limits.

On good days, she could move, mostly for walks, sometimes she could exercise, said Vanessa. At the time of our conversation, she was usually able to do strength training once a week — progress that was hard to think of at the start of the illness.

With regard to her cognitive problems, Vanessa attended regular neuropsychological training at the time of our conversation. For some time now, she has also been sleeping with a weighted blanket, which makes it easier to fall asleep.

Vanessa's environment is largely coping well with the new and changed situation. Social support is extremely important in such challenging situations, in which living conditions are so mixed up!

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... And now?

Good news — We asked Vanessa again how she was doing after a few months.
She started a new job a short time ago, which she is very absorbed in. And even in her free time, she seems to be becoming her old self again bit by bit. Because she is once again active as a trainer there.
On the one hand, this makes us very happy and, on the other hand, hopefully gives others affected a bit of hope.

Thank you for your openness, dear Vanessa. It's great that you've shared your experiences with us and that you can encourage others with it.

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