Long Covid shared experiences

Patients' impressions:

• "I was sick at home for 1.5 weeks, in a coma for 6 days and in hospital for another 10 days. During this time I lost 8 kg of weight (mainly muscle)"
• "I lost 15 kg within 4 weeks."
• "I have lost 10 kg, mainly leg muscle, and my tummy circumference reduced."
• "I lost 10 kg as a result of nausea, vomiting and lack of appetite."
• "Loss of appetite, loss of taste, extreme diarrhoea, severe weight loss (> 10 kg), body became very dehydrated."
• "I had only little weight loss, but muscle loss, particularly in my legs.

Patients' impressions:

• "I had weak legs and arms, my skin was hanging down." 
• "The Scales showed 'weight loss'. Also, I was unsteady while walking: it was painful and I had a lack of stamina."
• "Scales, trousers too large."
• "My external appearance obviously changed."
• "Walking is difficult, my legs often fail."
• "My Leg strength is weakened."

Patients' impressions:

• "I've walked a lot (as much as strength permits) during rehabilitation."
• "My muscles developed through exercise therapy, ergometry, gymnastics, swimming and walking."
• "I did physiotherapy and functional gymnastics."
• "Constant walking exercise"
• "Movement and load adapted to my respiratory situation"
• "I followed a healthy diet and did courses during rehabilitation."
• "Where appropriate, medication to at least limit diarrhoea"
• "Ergometer, wading through water"
• "Walking exercises, taking a walk, exercise"

Patients' impressions:

• "Excellent prospects, it's a question of time and effort."
• "Good, I felt significant improvement after just 3 weeks through constant active training."
• "Muscle development and mobility is progressing (still in a wheelchair on day 1, 5 rounds of gait test already possible on day 15)"
• "Sound evaluation of chances"
• "It's still too early for me to tell, for now the focus is on breathing."
• "My capacity still limited, I continue to do exercises at home to improve my resilience."
• "It's improving all the time."

Patients' impressions:

• I had a feeling of pressure in the corners of the lungs when breathing in and out.
• I felt like I had a low lung volume.
• I had pain in the extreme corners of the lungs, but only in the acute phase.
• Sometimes it was extremely painful, strain when taking a walk and during lung function test.
• I had irregular mild pain and difficulty breathing when walking uphill or climbing stairs.
• Pain was initially assessed at 7 to 8 on pain scale, extreme on gentle walks, currently much better: 2 to 3 on the pain scale following exertion.
• Suddenly everything fails under exertion (climbing stairs, walking, uphill), I had no air.
• Slight coughing when taking a deep breath
• I had a recurrent indeterminable burning sensation in the area of the pleura, especially during exertion.

Patients' impressions:

• I had an X-ray.
• I recognised it by having difficulty breathing after light activity.
• Rapid breathing.
• Feeling that you are about to suffocate, like having panic.

Patients' impressions:

• I had respiratory therapy following instructions, always breathing in and out deeply and consciously
• For me, respiratory exercises helped.
• I advise to perform breathing exercises adapted to pain and combine with stretching exercises, functional gymnastics, additional exercises using a TheraBand.

Patients' impressions:

• I feel like I had a resolution of pain through rigorous breathing exercises.
• My symptoms decreased steadily over time, which a doctor can also confirm using a stethoscope.
• Good prospects of rapid improvement.
• In my case, these symptoms diminished with time.
• I say, relatively good prospects with professional help during rehabilitation.

Patients' impressions:

• Very difficult to breathe in, irritating cough
• Breathing through the mouth seems OK, but not enough oxygen absorbed by the blood

Patients' impressions:

• On the day of discharge from hospital, I was told that my breathing was very bad (“only up to the level of my chest”) and that I had to breathe in twice
• My body was unable to cope with exertion; even the most minor activities are difficult (putting on socks, tying shoes, picking something up off the ground etc.)

Patients' impressions:

• For me, respiratory therapy devices helped, they made it possible to breathe in again in one go.
• External supply of oxygen helped me.  
• Lots of practice with respiratory therapy devices (Coach2 and Threshold)

Patients' impressions:

• When I concentrate on breathing (especially exhaling for a long time), saturation is right (97/98); when I forget and/or exert myself, saturation falls (91-93)

Patients' impressions:

• The sentence "I'm going to put you in a coma now" is etched in my memory, probably also in my subconscious. In the hospital I had a hard time getting to sleep, probably because I was afraid that it would happen to me again. When I got home I was able to sleep better again.
• I have periods of depression due to isolation.
• I had a feeling of despair only at the beginning of the acute illness.
• Sorrow
• "Why did I of all people get it?”
• I had a feeling of helplessness, a guilty conscience.
• I had an increasing sadness, feeling my healthy social environment doesn't understand me, feeling pressured by work colleagues. I was frequently close to tears.
• Those affected feel so powerless.
• Initially, I had a distinct, life-changing fear of a severe course as I am a type I diabetic, then I had extreme fear of being able to infect someone (still persists), otherwise later also fear of becoming infected again. The depressive moods grew stronger in the course of the disease, marked reduction in motivation, resignation.

Patients' impressions:

• My feelings were examined with questionnaires and talks. 

Patients' impressions:

• I recommend: Acceptance that your physical condition is not good, but that you can do something about it, and acknowledgment of the modest progress you have made.
• Be compliant with the specified measures, readiness to be vaccinated.
• Speak about your fears, have the courage to take a risk.
• Partners, friends, awareness-raising by professionals is very important.
• Emotional support from acquaintances, friends, family is very important and helpful.

Patients' impressions:

• A great deal depends on physical recovery; the emotional burden is more pronounced in worrying about relatives who you cannot help yourself.
• There are no magic remedies; time restores courage, strength and joy; don't force anything
• Good to very good