Long Covid patient complains: "My life largely takes place without me"
Created: 11/23/2022, 13:58
By: Katja Thorwarth
Long-Covid patients hardly take part in everyday social life.
© Frank Molter/dpa
In an interview, a long-Covid sufferer talks about her suffering, the ignorance of society and the failure of politics.
You are ill with Long Covid. When did you receive the diagnosis?
Two weeks after my corona illness on June 7th, 2022.
How did you know you were suffering from Long Covid?
Two weeks after my corona infection I was very exhausted and had severe headaches, ear and throat pains and heart palpitations as well as a severe cough and loss of taste.
I could only walk short distances, climbing stairs (one floor) and riding my bike immediately became out of breath.
The people around me also stressed me out.
After only a short physical or mental exertion, I was totally exhausted.
A condition that I had not known before and could not classify.
I then asked the doctor.
How are you currently? What therapy are you being treated with?
My cough is gone, my sense of taste is back and the pain is bearable.
I try to stay below my breaking point.
Shopping takes a maximum of 45 minutes and meeting friends takes up to 2.5 hours - but sometimes less or not at all.
People around me continue to be very tiring for me.
Long Covid patient: "I'm always surprised what's not possible"
How do you notice that?
In the case of overload, more and more symptoms set in, such as shoulder pain, neck, head and ear pain, neck pain, heart and lung palpitations.
Then only rest for several hours helps.
Sometimes there are also symptoms such as muscle pain in the upper arms or thighs and others.
How can one imagine a day with you?
my days are short
I manage about 4 hours in the morning and afternoon, and I need 2 to 3 hours of rest in between.
I think carefully about what I can do that day.
This is usually only one thing in the morning and afternoon.
And I'm always surprised at what's not possible.
What is your therapy like?
I was in rehab for five and a half weeks.
It was very exhausting for me to endure the therapy.
I had to end some of them early.
Also, I could hardly talk to anyone, socialize because it was too exhausting for me.
But the rehab experience and a long-Covid book by an affected doctor helped me understand this disease - and how to deal with it.
Otherwise I go to physiotherapy twice a week, once for speech therapy (breathing exercises) and once for rehabilitation sports (a lung group, the trainer has a long-Covid training course).
I also do short walks and light stretches, but no longer than 15 minutes.
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There are people who think Long Covid is 'conceited'. What are you saying to these people?
The symptoms, the pain and the stress intolerance are there.
The body shows you the limits.
I can tell them that my life largely takes place without me.
For example, I was recently with my doctor who asked me why I needed a speech therapist referral.
He hadn't even read my medical report from rehab.
In the end he recommended that I go to a psychologist, maybe it was all just psychological after all.
This ignorance is really killing me.
A lot of people who should know don't have a clue.
Many also do not accept the exhaustion of the sick.
For many sufferers, this leads to the fact that they constantly overload themselves, i.e. do exactly the wrong thing.
You have to explain everything to everyone over and over again.
Nobody imagines such a disease.
none.
What is Long Covid doing with our partners or family members?
Partner's response:
It's a heavy burden.
Many things are no longer possible or only possible to a very limited extent.
A lot has changed or needs to be done in a different way.
But it is important that my wife gets well again if possible.
I've given up the word 'soon' in this context.
The disease is a stroke of fate that we have to learn to live with.
What does the disease do to our social life?
Partner's response:
Difficult to keep in touch.
Participation in the sports club with training is not possible.
Also, not all friends have understanding for just a short meeting.
Christmas markets, street festivals, theatre, cinema, other events and much more.
are possible for me - but not at all for my wife.
Long Covid: Politicians send the signal 'that everything is not so bad'
Politicians give the impression that the pandemic is over. What do you say about the current Corona policy?
I find that very dangerous.
Those who test positive should continue to stay at home for a week to reduce contagion and thus the risk of contracting Long Covid.
Politicians must invest more money in research and in the treating physicians.
And make it possible for those affected to receive suitable therapies in a timely manner.
Despite the corona infection, many politicians do not let their work rest. What is that signal to people?
It's the signal that things aren't so bad.
If we can do it, so can you.
Maybe they all only have a mild course or medication that is inaccessible to us.
Or they have a doppelganger who represents them.
For me, the question arises as to whether any of them or their families have ever been seriously ill with Long Covid, which to be honest I can hardly imagine.
Do you feel let down?
Yes.
Interview: Katja Thorwarth
