Currently, a lot has happened in Long Covid research and in the fight against this disease. Is there something like this Recommendations for those affected by Charite or Government. A few months ago, the situation looked different for many people: they were thought to have recovered even though they had a wide variety of symptoms; many doctors did not give any advice at first. A few months ago we asked you about your personal experiences with Long Covid and what advice you would give to other survivors.

Many thanks to everyone who wrote to us about their personal experiences.

We would like to take this opportunity to thank you for all the emails we have received. Many people shared very personal stories with us. These were stories of failure, fear and despair. But there were also stories of healing, of small and large progress, and of hope that, despite everything, is stronger than the symptoms of the disease.

A reader pointed out to us that, especially for people who struggle with fatigue (especially CFS) after an infection, it can be a huge effort to read a text or type an email—and to do it to yourself in order to cope with your own problems. disease. We would like to thank you for this important information – and all the people who have invested their energy in writing to us about themselves – and thereby helping others.

Below we have collected excerpts from some of the letters. Although we were very interested in them, we excluded letters containing specific medical information or medications. This is because we, as an editorial team, cannot provide any medical advice. However, we discussed some of this advice and content in interviews with experts – you can find them on our website. Focus on long Covid.

Medical marathon and self-discovery

“You read and search for help on the Internet, but unfortunately you don’t always find what you need, or a more concrete picture gradually emerges.

I have since learned that I probably already had a condition called mast cell activation syndrome and that it only really hit with Covid.

A low-histamine diet, as well as various medications and nutritional supplements, help stabilize mast cells, preventing the release of countless messenger substances that cause many different symptoms (palpitations, shortness of breath, skin rashes, headaches, brain fog, stomach/intestinal problems) . , muscle pain, etc.).

Tanya, Wesseling

Tempo: learn to do nothing

“A few weeks ago I had Corona. Symptoms such as cough, fever, etc. went away after a few days, but I am still very exhausted and can’t do much. I missed 3 weeks of my internship and now I can only go there because someone gives me a ride in a car. Yesterday at noon my headache started again and I felt so bad that I had to lie down or go to another room. I don’t know when I’ll be able to cycle long distances again without feeling completely exhausted.

What has helped me so far is to start slowly, release internal tension (!) and give the body time. I started doing things at home and more and more doing things outside, with a lot of patience and a little more each time, or listening to my body and not making it cramp (motivation comes naturally).”
Jenny, 28 years old, Freiburg

My experience with this is to go very, very slowly, even if you feel like you can do it. So I got a lot further. It is very difficult to stand, for example, at the checkout. I often pass out, so now I travel with a small folding stool. It was very important for me to be active with short breaks, keeping my feet up was very important. Also walk slowly around the apartment. Standing movements such as arm circles… all tailored to your needs.”
Erica, Berlin

Overall I feel much better, have regained my strength thanks to the so-called “boost” and have survived the infection and long Covid with great patience and faith in the body’s self-healing powers. However, now I am very afraid of getting infected again in the winter with a higher number of cases and lower antibody status and am thinking about a fourth vaccination with Omicron-adapted vaccines.”
Heike, 42 years old, Freiburg

Suddenly everything is different

“About 18 months ago I fell ill with corona infection and have been suffering from Long Covid ever since. My symptoms: severe decrease in performance, constant fatigue, memory problems, balance problems.

I’m in a support group […] I also regularly go for intense walks in the fresh air and consciously breathe deeply. I eat grapes regularly, immediately feel a slight boost of energy, exercise at the fitness center, take garlic tablets and iron tablets with lemon juice, after which I feel much better, more resilient and prepared for everyday life.
Gunther, Willich

“It’s nice that I finally have the opportunity to share my experience. I haven’t found a way yet, just a misunderstanding.

On August 14, 2022, my first symptoms appeared – a slight sore throat. By August 16, 2022, nasal problems and cough developed. There was a different type than the usual infection. On August 17, 2022, completely new symptoms appeared: extreme weakness, trembling, lack of concentration, very shallow breathing and balance problems, swaying when running, very nervous, very slow to react, especially when moving as a pedestrian. […] After I got better, the symptoms returned and continue to this day. There are good days and times.

Acceptance, patience and even more small steps

In 2020, 6 weeks of severe illness were followed by a long phase of lack of stability, shortness of breath and weakness. I could no longer climb the slopes and could only climb the stairs to the top floor with difficulty and interruptions.
In the summer of 2020, I noticed problems with short-term memory and difficulty finding words, which was very annoying, especially since I was in the final stages of distance learning at the time.
In 2021, the situation has improved and almost disappeared, with only a slight improvement in the lack of physical stability.
After reinfection in early 2022, cognitive complaints quickly returned and intensified, and then decreased again to a certain level after 3 months.
Now, in September 2022, I have gotten used to living with it, albeit with regret. Here’s how I deal with it:

  • Problems with short-term memory: I take a lot of notes, lists, bullet points, and use the digital reminder features on my cell phone and computer. One more thing: I’ve always enjoyed doing different types of brain runs, so I’ll stick with this one.
  • Word search problems: I use paraphrases or other terms for the same topic and I am quite good at it because I have a very wide vocabulary. A fascinating additional problem: I work in a “talking” job that requires eloquence and the harmonious flow of speech. “Uh-huh… how was it, how should I say it?” Of course this doesn’t work. But since I cannot rule out stagnation, I fight the disease openly. I tell my listeners (clients) that I have a word finding disorder associated with Long Covid and that I may suddenly stumble. Anyone who thinks they can help me can “call” and if not, I’ll cover the situation with a little joke that will defuse the situation and then things will go pretty smoothly. In general, I approach the situation openly, with humor and a pinch of self-irony. This is true. I can try, train, work on myself, but I can’t do miracles. So I don’t take it seriously.
  • Lack of physical stability: every incline along the way causes shortness of breath. Stairs anyway. Counterstrategy: I take my time along the path I want or need to take. I think about how I can get to the right place. Unfortunately, when it comes to stairs, I prefer elevators. Getting to the top and gasping for air is pretty suboptimal. I’m not a fan of exercise, but I’ve learned to manage my stress within reasonable limits. Example: I love swimming, but I realized that I could drown. That’s why I take what’s called a pool noodle with me into the water, which means I can move slower when swimming, I have enough air and I don’t end up in an emergency situation.

Beatrix, 60 years old, Markersdorf

“I treated myself. I am almost completely symptom free. Perhaps others can help themselves with this:

  • […] Sleep problems: Don’t stress yourself. You sleep when you sleep. If you don’t sleep, distract yourself with radio or TV.
  • Pace: Accept your illness. Accept it, don’t get angry or sad, it takes a lot of energy from your body and mind. Give it the peace and self-love your body needs. It is very important! And when the crash comes, get angry for a moment and then pick up the pace again and embrace it!
  • Sports and exercise: Start slow and build up. At first, you may need to take a day or two off in between. Even if it was just a short walk.
  • Healthy eating: Lots of vegetables, lots of low sugar fruits, no sugar, whole grains, no white flour.”

Sabina, Cologne

When people around you are sick

“When a family member fell ill with corona, I first made him chicken soup. […]. I then advised this man to exercise every day, despite his illness, to maintain blood circulation and to go out to the balcony for fresh air as often as possible.

Then I think it would be beneficial to do everything that is good for the lungs and the immune system. for example, sit in front of a saltworks, go to the sea more often, or walk in the forest. Avoid stress in everyday life as much as possible; meditate or hypnotize; calm the mind and activate self-healing powers. Drink plenty of fluids and eat a balanced diet. I drink tea that is good for the lungs, etc.”
Elli, Mülheim an der Ruhr

“As a yoga teacher, I regularly hear about the positive recovery experiences that people suffering from Long COVID have had when they have practiced yoga with me. By working with the components of the breath, body and mind, typical symptoms can be systematically relieved. The respiratory organs are gently stimulated and supported and the body can be mobilized again. The mental effects of yoga help bring mental effects such as lethargy and depressive disorders under control and restore a positive outlook on life. Meditation calms thoughts revolving around (and around) illness and promotes mental balance. Best wishes to everyone recovering.”
Stephanie, Münsterland

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