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Here people tell their very personal stories and share their experiences with Long COVID.

As a young mother with Long COVID, Noemi Khediry faces a daily balancing act between much-needed rest and the demands of being there for her family. The lack of support from the healthcare system makes this task even more difficult.

Long COVID: A never-ending search for understanding and support

Noemi Khediry's disease began in January 2022 with a rather mild COVID-19 course. She recovered from the acute symptoms caused by the SARS-CoV-2 infection supposedly quickly. It was a few weeks later, in March 2022, that she suffered a total collapse. Initially, she experienced mild dizziness that lasted for a week. A clarification in the hospital did not bring any results.&nbsp;
While she was helping out with serving in her husband's restaurant, the dizziness became increasingly stronger. In the course of the evening, headaches and nausea emerged so that Noemi had to lie down. In the end, the dizziness increased so much that even when lying down, everything was spinning and she was no longer able to stand up. She felt extremely helpless and was frightened because she couldn't understand what was happening to her, where this extreme dizziness was coming from. She was worried about what would happen next. Even when all the guests had left, Noemi could not get up, she was taken to the emergency room and a 12-day hospital stay followed.
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The arduous road to diagnosis
She was permanently in bed, had severe headaches, lacked appetite, and was accompanied by persistent dizziness. Even for going to the toilet Noemi was dependent on a walking aid. Still, she could only walk a few steps with support. In an upright position the dizziness was almost unbearable and even when lying down it persisted. After extensive examinations in the hospital and several disturbing suspicions, from meningitis to blood clots in the brain, she was diagnosed with burn-out.&nbsp; The uncertainty during the examinations and the various suspicions were a strong additional burden. As a result of the burn-out diagnosis, psychiatric treatment and physiotherapy were ordered.
Since an application for rehab was rejected by the health insurance, Noemi was discharged after 12 days in the hospital without any improvement in her symptoms. Noemi was distraught that she had not received any help from the hospital and did not know what to do next. She was barely able to care for herself, let alone her children, and her husband had to work throughout the day. She was granted support via Spitex, but the nurses only came about 2-3 weeks after Noemi was discharged from the hospital. In the meantime Noemi was on her own during the day and dependent on the support of her family.
It was her physiotherapist, who first realized that Noemi's not suffering from burn-out but probably from Long COVID. As a result, her family doctor referred her to the Long COVID consultation, but she had to wait half a year for an appointment. Meanwhile, on her own responsibility, Noemi's physiotherapist was already adjusting her therapy. In February 2023 she was finally admitted to the specialized consultation and received the definite diagnosis: Long COVID.
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Noemi tried numerous therapies
As her Long COVID progressed, various symptoms emerged, the most common being word-finding difficulties, cognitive impairment, persistent dizziness, headaches, tinnitus, muscle failures in the legs, constant sensory overload, and exercise intolerance and fatigue. Due to the lack of support and the symptoms not getting better, the circumstances feel like being permanently caught in a downward spiral.
The troubling dizziness is accompanied by fear of falling over and stays throughout the day. The same goes for the headaches, which often lead to nausea. You never feel fully awake and can&rsquo;t do as much as you would like to. The sensory overload, which sometimes makes even simple conversations or the trip to physiotherapy unbearable, makes everyday life additionally tough.
Until her appointment at Long COVID consultation, Noemi was forced to try numerous treatments on her own initiative, from physiotherapy and craniosacral therapy, to traditional Chinese medicine (TCM) and acupuncture, to occupational therapy, nutritional supplements of all kinds and various medications for chronic headaches.
<blockquote>
"You feel lost, nobody is helping you. You have to constantly seek help yourself &ndash; it's incredibly exhausting, especially for people affected by Long COVID."
</blockquote>
While some treatment attempts brought slight improvement, others led to a crash. After switching to a new medication for pain, a crash confined her to bed for a week. A stellate block in the summer of 2023 caused Noemi to have such a severe crash that she still hasn't recovered from it today, 2 months after the procedure. Currently, she is able to stay on her feet for a maximum of 2 hours a day.
Noemi had to go through numerous of such crashes after new therapies or supposedly mild infections, in the last months. During a crash, she is barely able to stand up and has to spend most of her time lying down. This repeatedly leaves Noemi, who is in her early 30s, dependent on assistance for almost everything for weeks at a time. Staying optimistic despite these setbacks is a big challenge. Hard-won minimal improvements are wiped away by a crash within a very short time and you are back to square one.
Although their strength is hardly sufficient, people affected by Long COVID are forced again and again to try out new treatments on their own initiative and to finance them independently, since many treatments are not covered by health insurance. One quickly feels abandoned by the health care system, even though living in such a wealthy country as Switzerland.
A positive note: Noemi felt well taken care of at the Long COVID consultation, where her problems at least seemed to be understood. Even now when questions arise, she turns to the consultation doctors, who support her. Nevertheless, this support came extremely late, and her health situation has not improved noticeably since then.
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With the support of her children and partner, Noemi remains optimistic.
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Without the enormous support of her husband, Noemi would hardly be able to cope with everyday life. In a household with two children (9 and 5 years old), it is difficult to find some peace of mind which is so essential for people affected by Long COVID. But both her husband and her children support Noemi wherever they can, show understanding and never blame her.
She is infinitely grateful for this support, but at the same time she feels guilty about having to give up the entire household and the many small everyday activities, no longer being able to work and for being so dependent on her immediate environment. Since her illness, Noemi can practically no longer drive a car since it takes up too much energy. The fact that she is always dependent on help makes her sad. She does not want to be a burden to anyone. Accepting this helplessness is extremely hard for a woman who is used to being independent.
Noemi is also very grateful for the support of her family, for example by watching over the children during particularly bad times. Especially since she knows what a great burden it is to see someone you love suffer. Her husband in particular has suffered greatly from seeing his wife in such poor condition.
Overall, however, as a person affected by Long COVID one feels left alone repeatedly. There is often a lack of understanding and imagination. Far too frequent you get to hear that you can't be helped. Noemi had to realize in the last 1.5 years that interest quickly wanes when one suddenly can no longer participate in social life.
For many people it is difficult to deal with the situation and to find the necessary patience. Others are simply unwilling to spend their free time with someone whose energy level is often insufficient to leave the house or hold longer conversations. These losses in quality of life are immensely saddening and raise the question of whether things will ever get better.
The financial burden of her inability to work, which has now lasted 1.5 years, also weighs heavily on Noemi. The fact that there are still people who doubt that the complaints of people affected by Long COVID are real is inexplicable for Noemi.
<blockquote>
"Anyone who is that bad is willing to invest anything for improvement."
</blockquote>
A rehab stay planned through the Long COVID consultation, was again rejected by the health insurance, recently. This decision confirms Noemi's sobering experience with the health care system and shows that she continues to be left alone as a Long COVID patient. Instead of rehab, Noemi was advised to seek more outpatient therapies, which she is now pursuing. From rehab, she had hoped to finally be in an environment where her symptoms would be taken seriously and where she would be understood. In the meantime, Noemi no longer expects to return to her pre-COVID-19 condition.
Now, Noemi wants to try IHHT therapy and hopes that this might help her. Unfortunately, this also presents the very next challenge, as the cost of the therapy is not covered by health insurance.
She hopes to eventually be able to go about her daily life again, relying on a stable state of health. She was always very active, besides her job as a computer course leader and her duties as a mother of 2 children, she did a lot of sports, e.g., in the gym or cycling. These hobbies and her job, which she enjoyed very much, were taken away from her by the disease.
Understanding and coming to terms with this discrepancy of going from being a functioning, working, active, young woman to being so much dependent on support from one moment to the next is an enormous challenge. And this process is made even more difficult by the great uncertainty as to whether things will ever get better again.
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Before Long COVID, Noemi was an avid cyclist.
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Despite the frequent setbacks, the financial and health uncertainty, Noemi holds on to her hope. It is important for her to use her experience to show the substantial impact Long COVID has on the lives of those affected, how bad the disease is and how important it is to take people affected by Long COVID seriously and to support them.
Even though it sometimes seems hard to distinguish small improvements from simply getting used to the condition, Noemi remains optimistic. She is convinced that her condition will improve. Above all, it helps to see how understanding her children and husband are about the situation. She is extremely grateful for her partner's support and for the fact that their marriage has now endured this difficult phase for more than 1.5 years. Noemi's closing word to others affected is:
<blockquote>
"Even though it's very difficult to see, which I understand very well since I'm going through it too &ndash; it takes time, but it gets better! Even if it's just small steps, we have to hold on to those, and things will get better eventually."
</blockquote>

Instead of focusing on what Long COVID prevents her from doing, psychologist Isabella P. always keeps her eyes on what brings her joy every day. With the support of her husband and an unwavering positivity, she faces her illness head on.

Instead of focusing on what Long COVID prevents her from doing, the psychologist Isabella P. always keeps her eyes on what brings her joy every day. With the support of her husband and an unwavering positivity, she faces her illness head on.

You need to look for things that bring you joy

"I love my job and would very much like to return to work. It's important to understand how much people affected by Long COVID suffer when they can no longer do their jobs." Isabella P. is a psychologist at heart, and her work as a clinical psychological diagnostician in her own practice, at the Children's Village, and at a school for continuing education have been an important part of her life. Since her Corona infection in November 2021, however, Isabella can no longer pursue her beloved profession.
She had contracted SARS-CoV-2 three weeks after her 3rd vaccination. Her doctors suspect that the double stress on the immune system from the vaccination plus the infection may have contributed to Isabella developing long-term sequelae. From the beginning, she experienced severe palpitations that have not subsided to this day. After the acute infection, the psychologist remained in isolation for a long time, as she did not recover for weeks.
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Persistent cardiovascular problems and initial overwork led to the first crash
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On Christmas Eve, she went to the emergency room because of her persistent palpitations and circulation problems. Cardiac exams performed there showed no abnormalities, and a tentative diagnosis of Long COVID was made.
Although her condition hardly improved, Isabella started an attempt to return to her job in January 2022. She had never heard of pacing until then. Following the motto "to get active again, you have to keep challenging yourself", she permanently overloaded herself and quickly felt the consequences. Teaching while standing was soon no longer possible and the dizzy spells became more frequent and occurred even while walking short distances.
Isabella started Interval Hypoxia-Hyperoxia Therapy (IHHT), in which oxygen-depleted and oxygen-enriched air is alternately inhaled through an oxygen mask. She was given various nutritional supplements including vitamin C infusions. However, her condition did not improve. Finally, in early February, she collapsed on the way back from her internist's office, which she normally walked without any problems. Subsequently she was confined to bed for 6 weeks.
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Knitting and crocheting are two of Isabella's new hobbies.
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In April 2022, Isabella accidentally ended up at a convalescent center instead of a rehabilitation center as planned. Here, the doctors and nurses quickly realized that as a person affected by Long COVID, rest was what Isabella needed most. While she suffered 2-3 collapses per day at the beginning, the passive, calming treatments led to a huge improvement within three weeks. By the end of her stay she no longer had any circulatory collapses and could walk with &nbsp;again.
Even after making so much progress, Isabella strictly adhered to her recovery plan and learned to properly manage her resources with the help of pacing. By the end of the year, she was able to walk without canes and felt fit enough to plan her return to work. To prepare, she went to a rehab center again in January 2023.
However, the stay at the rehab was disastrous, the distances at the center were so far that the psychologist was back in a wheelchair after three days due to the severe strain. Since then, her life is characterized by fatigue, muscle weakness and circulation problems. At home she can move and gets about 2000 steps a day, but continuous distances over 50 m, such as in the supermarket, are almost impossible to conquer without a wheelchair.
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"Pacing is hardest on days you're feeling better."
</blockquote>
What helps her the most is pacing and pulse control. Even minor activities in everyday life can cause Isabella to crash, and she must always be careful to keep her pulse below 80 beats/minute. She is all the more grateful for the enormous support she receives from her husband, who not only relieves her of everyday tasks, but also makes sure she gets her rest.
Cryotherapy can also provide a small boost in activity - after a treatment in the cryo chamber, Isabella feels fit for a few days. However, this does not bring long-term improvement. The general helplessness of those treating and those affected by the disease often means that one has to ask for help again and again. The answer is usually the same: there are no new therapeutic approaches yet.
Due to her illness, Isabella is very susceptible to infections, she catches them quickly and each infection sets her back by weeks. In the meantime, she often struggled with fear of contact as a result. "The fear of infections cannot be allowed to lead to isolation". Her close friends now know not to visit unless they feel healthy, and at indoor public events Isabella always wears a mask to protect herself.
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From the window, Isabella likes to watch a red kite. Especially on bad days, it helps her to watch him preen his feathers in peace.
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As a psychologist, Isabella advises other people affected by Long COVID to allow themselves to feel sorry for themselves sometimes. Having to turn your whole life upside down because of Long COVID is not fair. But you also have to overcome these dark phases and learn to recognize the small joys of life again. When her mood is particularly bad, Isabella's husband provides the necessary change of scenery and motivates her to leave the house.
Moreover, it is important to take pacing seriously and start early, to accept help, and not be ashamed of the disease. People should find hobbies that work well with their current energy levels. For example, Isabella has replaced her old hobbies such as line dancing, playing billiards, mountain biking, and hiking with ones that match her new activity state: knitting, crocheting, watching a red kite, or playing Escape room board games, whenever her cognitive state allows.
Such systematic changes in everyday life are just as important as seeking out people in your own environment who give you strength and who you can rely on. For Isabella, it is her husband who gives her this support. On darker days, the gratitude for his help reminds her that she wants to be strong not only for herself but also for him, and that it is worth gathering new courage every day to face Long COVID.

Neither multiple sclerosis nor Long COVID can stop Natascha Brüstle (34) from enjoying life. Despite her illnesses, the lively young woman radiates incredible courage and contentment.

Fighting Long COVID and Multiple Sclerosis with Faith and Gratitude

It was in the fall 2012 when Natascha Br&uuml;stle first noticed strange symptoms: her legs often felt numb, and she felt dizzy easily. Her family doctor could not directly interpret the described symptoms &ndash; it was only when Natascha suffered a seizure right during a visit at her doctors practice in February 2013 that she had a concrete suspicion, which was later confirmed in the neurological emergency room. After two days, the diagnosis was clear: multiple sclerosis (MS). A world collapsed for the young student, who was about to take her state examination to become a teacher.
The course of treatment for multiple sclerosis
The following years were characterized by the search for a suitable therapy. The classic first-line therapy with glatiramer acetate (Copaxone&reg;) showed little effect, as Natascha's MS was particularly severe. After several setbacks due to drug intolerances, Natascha finally found a suitable therapy in January 2019 with ocrelizumab (Ocrevus&reg;). The drug reduces her MS activity to such an extent that she has not suffered any relapses since then.
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Faith gives Natascha a lot of hope.
Since Natascha's immune system is suppressed due to her medication, she was vaccinated against Corona early on (three times) and received her last vaccination in December 2021. The vaccinations were tolerated well, and her MS treatment could continue without interruptions until February 2022.
Then, in March 2022, Natascha got infected with SARS-CoV-2, initially presenting with a persistent irritable cough. When her lungs did not recover for weeks, she was diagnosed with bronchitis. A computed tomography (CT) scan in June 2022 showed that this must have been a wrong diagnosis: the lung was much more affected than what is usually seen for bronchitis. She had contracted severe pneumonia and was on sick leave for 8 weeks. In August, she began her reintegration and although her general condition was good, her lungs were still causing significant problems. Unfortunately, she did not always receive the support she had hoped for from her doctor; neither breathing exercises nor medication to increase lung function were recommended. Because of the lung impairment, her upcoming Ocrevus&reg; infusion in August 2022 was postponed.
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In 2017, Natascha got a horse that has accompanied her ever since.
Through Long COVID, Natascha has been significantly more susceptible to infections
In September 2022, Natascha noticed comparable symptoms to those she had experienced during her COVID-19 illness a few months earlier. After a few days, a test confirmed a new SARS-CoV-2 infection. The acute infection was clearly evident on a CT scan, which happened to be taken during the same time period to assess the impairment of the lungs from the initial infection. Again, Natascha struggled severely with the symptoms of the acute infection. Over the next few months, it became apparent that her immune system and especially her lungs were significantly weakened. She is still very susceptible to colds, which are usually accompanied by a strong irritating cough that only responds to strong medication like codeine. One advantage of the coughing: the involuntary abdominal training helped her to lose 20 kg in a very short time, the most effective diet ever, Natascha quips.
Despite the recurring infections, Natascha was able to keep the appointment for her next scheduled Ocrevus&reg; infusion in January 2023. An MRI in April showed no changes in the multiple sclerosis activity, although therapy had to be interrupted for six months in 2022.
<blockquote>
"My horse is not only an emotional support for me, but also trains my balance."
</blockquote>
Through Natascha's previous illness she was already familiar with some of the symptoms common to Long COVID. For example, her fatigue was no more pronounced than before. Hardly surprising, after all, she had learned in the previous years to listen well to her body and to allow herself plenty of rest. She would like to encourage others affected never to lose the joy of life. This also includes doing only what you really feel like doing, without thinking to much of the expectations of others. People should never lose their optimism, even when fatigue and battles with insurance companies are draining. For Natascha it is natural to look at one's own situation with a healthy amount of self-irony: You have to take everything in life with a good laugh!
Despite the stress and strains of MS and Long COVID, Natascha never lost her courage. Her faith and especially her horse always gave her strength. The latter not only gives her psychological stability. Riding trains her balance and thus counteracts impairments caused by MS. Moreover, Natascha finds fulfillment in her work as a social care worker for people with disabilities. It gives you a lot back when you can help other people, she explains. She is grateful for every day that her legs, body, and brain work as they should, that she can enjoy the beauty of nature, the peace of gardening and that she can experience the joy of spending time with her horse.

For a year, pediatrician Dr. Michael Dacher struggled with cognitive difficulties and weakness from Long COVID. In the future, the doctor will celebrate the first day he woke up with a "clear head" again like his second birthday.

Pediatrician Dr. Michael Dacher struggled with cognitive difficulties and weakness from Long COVID for a year. Good management and patience eventually led to recovery.

When Long COVID forces a doctor, father and husband to take a break

Being there for others as a doctor, father, and husband, offering support and solving problems &ndash; this was natural and central for Dr. Michael Dacher before his corona infection. The pediatrician was used to having to give 100% for his practice and family to function. The feeling of being at the limit with one's own resources was not a foreign one &ndash; everybody develops their methods to recharge their batteries again and again, for example during vacations with the family. This makes it even more difficult when those methods suddenly no longer suffice. Dr. Dacher was confronted with this in the spring of 2022. Just as he was recovering from a serious illness the previous fall, he became infected with SARS-CoV-2. After a few days of flu-like symptoms, his performance failed to return. Physical symptoms improved, but cognitive impairments which could not be reconciled with a demanding daily routine remained: The much-described "brain fog" made it impossible for the doctor to concentrate for a full day of work as before, to run the practice, and to be there for his family in the evenings and on weekends.
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Walks with his family and his dog helped Dr. Dacher clear his head. (Picture: private)
It was only a few weeks after the acute infection that the doctor realized that his complaints had to be related to Covid-19. Since it was clear to him that his practice and family needed him urgently, he sought and found help from his family doctor and psychiatrist. Besides providing him with medical support and friendly advice, they ensured his expectations of the recovery progress to remain realistic. The pediatrician remembered, he received clear signals from his body about what is possible and what isn't. Adhering to those signals has been a learning process. Besides Long COVID itself, the biggest challenge was communication. Explaining to the team in the practice why he suddenly couldn&rsquo;t be present anymore, that old boundaries no longer apply and that they would have to cushion a lot of work for an indefinite period of time, was demanding. The self-employed doctor suddenly had to radically prioritize and hand over administrative concerns, salary payments and routine duties that arise in the practice. Communicating this situation has been difficult, he says: "It's like sprinting in track training and being held back with a rubber band. In other words, in terms of thinking, it feels like having to move a spoon in honey."
<blockquote>
The Thinking: it feels like having to move a spoon in honey.
</blockquote>
What helped Dr. Michael Dacher was the greatest possible transparency in communication with his team and family. He said he was always explaining himself, supported by scientific evidence wherever possible. Using medical terms for the symptoms often made it easier, he said: postviral encephalopathy (usually temporary, immune-mediated impairment of the brain by the virus), for example, which is responsible for the inability to concentrate. The fact that there were hypotheses that could explain his Long COVID symptoms had made it easier for him to believe in his recovery, he said, even if the time frame was difficult to estimate.
On August 8, 2022, the doctor recalled, he woke up with a clear head for the first time after the infection: "I will celebrate this day like my second birthday in the future." Although there were a few difficult days after that, things steadily improved from then on, he reports. He gradually increased his workload again and was finally able to thank his team and family for their strong support.
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After Long COVID, the doctor was able to devote himself to his hobbies again, including astrophotography. (Picture: private)
From his multiple perspectives as an employer, practicing physician and patient, Dr. Dacher shares with others what has been good for him and his recovery:
<ul>
<li>Taking the body's signals seriously and accepting limits</li>
<li>Relaxation techniques, which can look very different: e.g., autogenic training, yoga</li>
<li>Incorporating mindfulness moments and reflecting on what leads to progress</li>
<li>Doing sports only according to your ability to cope with stress</li>
<li>Consciously not using your head for a change: For Dr. Dacher, watching youtube tutorials on car repairs, for example, contributed to cognitive deceleration and calmness</li>
<li>Communication: Explaining why you're currently not performing as usual to those around you, or bringing in people who can take over this function</li>
</ul>
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Today, Dr. Michael Dacher is feeling much better again, he says. He has been able to resume his hobbies: In addition to volleyball in the club, the doctor is engaged in astrophotography. What fascinates him about it is that he can use simple means to make galaxies that are thirty or a hundred million light years away visible from his backyard. "For me, it puts our daily hassles into perspective," he explains. Dr. Dacher has also been looking at his health and his family's everyday happiness from a different point of view since Long COVID: "You can't really feel how pleasant it is to be healthy until it's almost taken away from you."

Alma Baltic has been suffering from the effects of a COVID-19 infection since December 2020. Muscle weakness and cognitive difficulties have led to a large number of accidents since then.  The mother of three children is going through this crisis with exemplary optimism.

Long COVID led to many accidents for Alma Baltic. Nevertheless, the 53-year-old always remains positive.

"Mental strength" - this keyword is embodied to an impressive extend by Long COVID patient Alma Baltic. As she tells her story, the listener inevitably marvels at the composure with which she recounts her experience of the long-term consequences following her corona infection. The 53-year-old describes her life before the first COVID-19 infection: The nurse and mother of three children was always active, both privately and professionally. Despite some strokes of fate that she had to overcome as a young woman, Alma Baltic always met challenges positively, she says. She shaped her life with joy in work, sports and singing. During the interview, she translated a proverb from Serbian: "Take everything positive that life gives you today."
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Alma Baltic led an active life - enjoying work, sports and singing. (Image: private)
In December 2020, she had to slow down: a Corona infection forced her into a hospital bed with headaches, fever, muscle weakness and cognitive difficulties. Alma Baltic had recovered only slowly from the acute complaints - as late as spring 2021, she had only been somewhat better for hours at a time. The seizure-like muscle weakness and cognitive difficulties remained particularly pronounced. Thanks to good outpatient care by her doctors and therapists, she had been able to make small progress until she felt fit enough to take her first short ride on her e-bike again shortly before Easter 2021. In retrospect, it was probably due to a sudden feeling of dizziness that the nurse fell during this ride and had to be admitted to hospital with serious injuries.
<blockquote>
A fall with the e-bike made the situation worse
</blockquote>
After the accident, Alma Baltic began rehabilitation therapy. But when she was discharged from it, the 53-year-old had not yet been able to walk normally again - fortunately, she received support at home from her children, who helped her cope with everyday life. Between countless visits to the doctor and therapy approaches, the nurse fought her way forward step by step. Nevertheless, she had never been able to completely get rid of the cognitive impairment and regular bouts of weakness in particular. This resulted in a succession of accidents that exacerbated the condition due to the existing Long COVID problem. After another accident occurred in October 2021, Alma Baltic sustained injuries that severely limited her mobility.
Meanwhile, the Long COVID patient had to look back on a full year of illness. It was not only Long COVID and the consequences of the accidents themselves that placed an enormous burden on Alma Baltic: the connection between Long COVID symptoms and the accidents was often difficult for her private and medical environment to understand - a particular challenge when it came to communication. When her pain was attributed to psychosomatic patterns, the nurse did not feel taken seriously and felt left alone.
<blockquote>
Numerous accidents due to Long COVID symptoms
</blockquote>
Orthopedic surgery followed in spring of 2022. From successful rehabilitation and good medical care, Alma Baltic drew new strength and finally dared to take a big step towards her old life. In the summer of 2022, she started an attempt to return to her job. There, however, the consequences of Long COVID and the accidents caused her great difficulties: Although, as a nurse, she had previously been used to working under great time pressure and also taking on physically demanding tasks, she found that she was no longer able to withstand stress and physical strain. Renewed bouts of weakness also led to incidents and injuries at work. By now, Alma Baltic had almost become accustomed to the constant pain, she reports, as well as to the never-ending marathon of doctor's visits and the energy-consuming negotiations with insurance companies.
A permanent return to the nursing profession was not possible for Alma Baltic due to her Long COVID symptoms. As a result, she lost her employment, she says. In this situation, she felt very alone and would have liked more support from her employer.
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Alma Baltic found fulfillment and joy in her job as a nurse. (Image: private)
With the great support of her children, the 53-year-old is looking for ways to be able to manage her everyday life independently again. She would like to find a part-time job in a less physically demanding field, because work has always been natural and very important to her, she says. Despite all the setbacks, she is positive that she will make it: "What doesn't kill me makes me stronger!" Her enthusiasm for fitness, swimming and social activities, which she has never given up even during difficult times and which she follows whenever her condition allows it, helps Alma Baltic to make steady progress. Her perseverance sets an example for many other Long COVID patients and may be an encouragement.

With unwavering optimism through Long COVID

To cope with the pain, Nicola Renfer began writing poems – and found a new focus in life.  

Nicola Renfer knows pain. She has suffered from migraine attacks since childhood. Taking painkillers almost every day and the breaks she needed allowed her to manage her day-to-day life relatively well for a long time, she explains. This changed in winter 2022 after she experienced a mild course of COVID-19 infection. She describes how her headaches became far worse and she developed an excessive sensitivity to pain (allodynia) and <a href="http://altea-network.com/en/vademecum/throat-nose-ears/#tinnitus" target="_self">tinnitus</a> on the right side of her head. Renfer also reports suddenly experiencing misophonia &ndash; an extreme sensitivity to certain everyday noises. Her son biting into an apple, for example. Or the countless keystrokes applied to keyboards in the reception area of a doctor&rsquo;s practice. All harsh, staccato sounds and many other stimuli torment Nicola Renfer.
After COVID, the pain remained at an unprecedented level
While her family recovered quickly from the acute course of the illness they experienced, Nicola Renfer's symptoms remained. COVID-19 intensified the pain she already had beyond measure, which remains unchanged to this day.
<blockquote>
&ldquo;Covid exploited my vulnerabilities.&rdquo;
</blockquote>
Shortly after becoming infected, she went back to her job as a high school teacher of Italian and history. After just a few days, she realized that working was no longer possible. It took her some time to accept that she was no longer able to keep up with her normal everyday routine. While strong painkillers used to enable her to lead a seemingly normal day-to-day life and to work, even these could no longer alleviate her omnipresent pain after COVID-19.
A return to work was a long way off
Time and time again, the 42-year-old hoped to be able to return to work soon, but to no avail, as the constant migraine attacks and increased sensitivity prevented her from being able to teach. After an exhausting period in which Renfer went from specialist to specialist, the prospect of the pain being a long-term effect became real.
<blockquote>
&ldquo;Poetry simply resonates with people differently. It affects people more deeply than normal words.&rdquo;
</blockquote>
This meant saying goodbye to her usual social life, exercise routine and work. It also led her to search for a new task &ndash; one that can coexist with her pain. What Nicola Renfer found was a task that not only coexists but is fueled by her pain. &ldquo;Channeling pain into passion&rdquo; &ndash; this is how Renfer describes the meaning of poetry.
&ldquo;When I am suffering from the most intense pain, the words come naturally&rdquo;
She has always loved languages. She did not begin to write poems herself until she was advised to do so by her trusted doctor, who accompanies her in her fight against the pain, says Nicola. Poetry helps her on many different levels; when the pain is at its most intense, the words come naturally and help her to cope, she explains. The poems also offered her a wonderful opportunity to make herself heard: &ldquo;Poetry simply resonates with people differently. It affects people more deeply than normal words.&rdquo;
<img src="https://adm.altea-network.com/assets/32aed8b9-de8f-4742-aefb-bde8da52e2cd?width=1280&amp;height=853" alt="Schreiben (mit Quelle)" />
Nicola Renfer writes poems. (Photo: Mimmo Muscio, Birsforum Medien GmbH)
This way of making oneself understood plays a very important role for Nicola Renfer. She says it is challenging to explain to those around her how this omnipresent, invisible pain affects her. Family and friends are watching their mother, wife, daughter, friend and colleague change &ndash; and have to find ways to deal with it. This has not been easy for anyone involved, but the family has grown closer during this time.
Taking part in life despite her guilt
In poetry, Nicola Renfer found the strength to deal with the pain that accompanies her and the courage to take on this task despite being on sick leave. She tells other affected people that: &ldquo;You&rsquo;re allowed to make yourself seen! I can&rsquo;t work or have a normal day-to-day life, but I can write &ndash; and that's not a crime.&rdquo; She believes that despite their illness, affected people need to have the courage to take part in life again little by little &ndash; otherwise it would be impossible to cope. Nicola Renfer also visibly struggles during our conversation &ndash; again and again, she has to close her eyes for a few seconds to deal with the many stimuli. &ldquo;You find methods that work for you,&rdquo; she explains.
<img src="https://adm.altea-network.com/assets/a92bf7f1-985b-4e2c-ab92-c2f7ebd02a6a?width=1726&amp;height=1142" alt="Bild 2 (update N R17.03.23)" />
Poem: Worte wie Treibgut (Bild)
These days, poetry enables Nicola Renfer to cope with her pain. She also regularly receives antibody therapy as part of her migraine treatment. It is hoped that this will at least be able to flatten out the peaks of her pain somewhat.
UPDATE April 2023: Nicola Renfer was diagnosed with ME and PEM after the symptoms had partially worsened. This helps her to explain and understand the suffering even before the COVID infection, she reports.
Encouraging others
Since she is unable to return to her job as a teacher, Renfer hopes to be able to make writing her central mission. As a health ambassador, she wants to encourage others affected by Long COVID while also dedicating herself to her poetry.
Readings, a social media account and, in the long term, a collection of poems are examples of projects that Renfer wants to tackle in the future, depending on her health.
&ldquo;From a sore point to a turning point&rdquo; &ndash; this accurately describes how the pain that tormented her for so long suddenly spurred her on to her new mission.
Anyone interested in discussing the topic of &ldquo;Coping with Long COVID using poetry&rdquo; with Ms. Renfer is welcome to contact her <a href="mailto:wortflocken@breitband.ch">by email</a>.
<img src="https://adm.altea-network.com/assets/c70f87cf-5405-43c8-ba64-344513972058?width=601&amp;height=244" alt="Bild 3 Teil Von Spinnend Bleibts Spannend" />
An extract from the poem &ldquo;Spinnend bleibt&rsquo;s spannend&rdquo;
&nbsp;

“From a sore point to a turning point” – pain management through poetry

The 32-year-old architect and athlete Roman Schöggl was out of action due to Long COVID for almost a year – and fought his way back to 100%. 

When Roman Sch&ouml;ggl fell acutely ill with COVID-19 in March&nbsp;2022, he had expected a normal infection: after five days of cold symptoms and nine days of quarantine, it was natural for him to continue with his normal routine. For Roman, this meant a 40-kilometer bike ride with his girlfriend Natalie and shortly afterward back to winter skiing trips. But even before he reached the first meters of altitude, the infection he thought he had overcome put a stop to his plan. Due to severe shortness of breath, Roman had to unbuckle his skis and head home.
&ldquo;The second collapse was followed by the hardest days of my life&rdquo;
Three weeks after the positive PCR test, he went to his GP. After a 750-meter walk to the practice, the 32-year-old collapsed there and was taken to the hospital. There, except for peripheral bronchospasm (a spasmodic narrowing of the bronchial branches), nothing was found in the CT.
<img src="https://adm.altea-network.com/assets/48593d1f-491f-48dc-9049-04549a6ae1fc?width=4032&amp;height=3024" alt="2022.05.30 Reha Beginn" />
Bild Reha Beginn ODER Reha &Uuml;bungen: In June&nbsp;2022, Roman Sch&ouml;ggl was able to start outpatient rehabilitation therapy in Innsbruck. (Picture: private)
He reported severe <a href="https://altea-network.com/en/vademecum/breathing/" target="_self">breathing difficulties</a>, shortness of breath and <a href="https://altea-network.com/en/vademecum/weakness" target="_self">weakness</a>, which forced him to rest until he could even think about being fit enough to attend an appointment with his father. When he collapsed there again, he was returned to the hospital and treated in the intensive care unit. With the exception of the symptomatic and moderately successful treatment of acute respiratory distress, there was no long-term help for him. The following months Roman spent in his apartment. Phoning, talking, walking &ndash; any effort was impossible for him. This second collapse was followed by the hardest days of his life, says Roman.
Roman was supported by close caregivers
During this time his girlfriend Natalie and his friend Lukas affectionately looked after him. &ldquo;I couldn&rsquo;t have done it without them,&rdquo; says Roman. Natalie took unpaid and care leave to stay with him. She handled correspondence with the outside world, researched and read a lot about Long COVID. With her help, Roman struggled for confidence every day and clung to the motto &ldquo;it&rsquo;ll go away at some point, it just takes time&rdquo;. He found information and motivation on the Altea platform, among other things &ndash; the positive experiences of other patients gave him encouragement during difficult times, he says.
<blockquote>
&ldquo;The first drive to the rehabilitation clinic that I managed to do on my own again, was a highlight!&rdquo;
</blockquote>
With a change in diet, dietary supplements, breathing therapy, the <a href="https://altea-network.com/en/vademecum/mental-health/#wim-hof" target="_self">Wim Hof method</a> and structured <a href="https://altea-network.com/en/vademecum/fatigue/#pacing" target="_self">pacing</a>, Roman fought the days when even watching a football match on TV was too stressful. He continued this program when he was able to start an outpatient rehabilitation therapy in June. &ldquo;It was a huge step when I was able to drive alone to the rehabilitation clinic two and a half kilometers away for the first time,&rdquo; he says, smiling at the thought of the text message he sent to his girlfriend at the time: &ldquo;I got there safely.&rdquo; In the rehabilitation clinic, structured respiratory muscle training helped him &ndash; he was able to reach almost 95% of the initial 30% muscle capacity. &ldquo;I can now hold my breath longer than ever before &ndash; up to four minutes,&rdquo; says the architect.
Support for physical and mental health in the rehabilitation clinic
He also found support there in overcoming the <a href="https://altea-network.com/en/vademecum/mental-health/" target="_self">mental consequences</a> of the collapses. Together with psychologists, Roman was able to come to terms with what had happened to him. As a healthy young person who works, acts, likes to go out, is a member of clubs and, as a top sporting achievement, had contested an Ironman in 12 hours and 26 minutes just six months before, to have suddenly had his life snatched away from him: &ldquo;Ironman is a piece of cake compared to that,&rsquo; he says.
&nbsp;
<img src="https://adm.altea-network.com/assets/af9d8053-4069-4094-b8ce-4c94f87bb8a4?width=2393&amp;height=2393" alt="2021.09.19 Ironman Klagenfurt" />
Bild Ironman Klagenfurt: Roman Sch&ouml;ggl at the finish line of the Klagenfurt Ironman, which he completed in 12:26 hours six months before falling ill with Long COVID. (Picture: private)
Long COVID ruled his life for almost seven months, and Roman had to spend 250 days on sick leave in 2022. Although he enjoyed his profession as an architect, the 32-year-old decided to make a new start after his illness. He currently teaches at a high school. After Long COVID, he felt he needed to work with young people, be able to teach something and make a completely fresh start.
A bucket list for the future after the illness
During rehabilitation therapy, he set himself seven goals for the time after Long COVID, of which he has already achieved four. Although these endeavors seemed unattainable during his illness, they gave him strength and grit, says Roman. His first goal was a pilgrimage to Absam in Tyrol. This plan stemmed from his hobby of acting in the theater: the pilgrimage to Absam occurs in the play the group was performing at the time of its first collapse. In addition to his closest caregivers, the theater group also gave him courage and strength. According to Roman, they told him &ldquo;we will perform this play with you or with no one&rdquo;.
<img src="https://adm.altea-network.com/assets/8d60ba1e-0f98-4cbe-95e3-3bb36bd290e3?width=4032&amp;height=3024" alt="2022.08.23 Absam" />
No. 1 on Roman Sch&ouml;ggl&rsquo;s bucket list: go on a pilgrimage to Absam on your own after Long COVID. &nbsp;(Picture: private)
The seventh point on his bucket list is to successfully compete in another Ironman, for which he is currently training again. &ldquo;Anyone and everyone can do it because I did it too,&rdquo; Roman tells other Long COVID patients.
On 31&nbsp;December, he said goodbye to 2022 and this chapter of his life. Today, he reports, he is as well as he was before the infection. He has learned a lot to take with him in his life after Long COVID. He now takes a more nuanced view of his performance and approaches boundaries differently. &ldquo;Before Long COVID, my limit was the Ironman. During it, on some days, just taking a single glass out of the dishwasher was too much.&rdquo; For both of these, recognizing and accepting this individual limit could be seen as an achievement. This is also a prerequisite for the pacing method: adjusting the strain on your current condition without going too far. This is exactly what Roman recommends to those suffering from Long COVID: accepting your own new boundaries in the moment and noticing the little achievements. &ldquo;Look positively to the future and always stay hopeful. Confidence, belief in self-healing and constantly holding on to even the smallest of goals will help you progress: sometimes it&rsquo;s slow, but always steady! After all, Long COVID is a real long-distance race.&rdquo;

Long COVID marathon – back to Ironman level after a year of illness

Using self-care and self-reflection to identify early warning signs of exceeding your limits in order to actively prevent crashes

The phone had already rung a few times when Mr. Schmied finally picked up. He had been very busy at the time, having given two short presentations on depression at the Swiss Handicap Trade Fair in Lucerne over the previous two days. As the president of the &ldquo;GLEICH UND ANDERS Schweiz&rdquo; association, which aims to promote and support mental health for all, he is in great demand.
He also works part-time as a peer worker. These are people who have recovered from a mental illness and who are now using their experiences to help others affected. He has always been a busy and performance-oriented person, which is also how he ran his own hotel with 22 employees, before he was the victim of a serious traffic accident which suddenly tore him out of the here and now.
<blockquote>&ldquo;I fell ill with COVID in the midst of my post-traumatic stress disorder&rdquo;</blockquote>
His body recovered from the accident and the wounds healed, but his psyche had to contend with severe depression from then on, which developed into&nbsp;<a href="https://www.msdmanuals.com/home/mental-health-disorders/anxiety-and-stress-related-disorders/posttraumatic-stress-disorder-ptsd" target="_blank" rel="noopener">post-traumatic stress disorder</a>&nbsp;(PTSD). PTSD can develop immediately after a major event or sometimes years later. Often, those affected withdraw or become disinterested, feel as if they are strangers in their own lives and try to suppress the stressful event.
The beginning of a very physically demanding journey
In January&nbsp;2021, Mr. Schmied learned of his COVID-19 infection. It was to be a long and, above all, hard road &ndash; once again! He spent 21 days in isolation, suffered a pulmonary embolism and finally had to be oxygenated in hospital. Today, he is happy that he was not intubated.
<blockquote>&ldquo;Psychosomatic symptoms combined with Long COVID &ndash; it was too much.&rdquo;</blockquote>
Mr. Schmied recovered slowly, and although he was still struggling with <a href="https://altea-network.com/en/vademecum/fatigue/" target="_blank" rel="noopener">fatigue</a>, among other things, his mind was stronger and he started working again much too soon. He seemed to have had a successful return to work following his COVID infection and had his PTSD symptoms under control to some extent. But just under 10 months later, at the end of November&nbsp;2021, came the big crash where everything stopped working.
&ldquo;I went back to work much too soon&rdquo;
Based on the symptoms, burnout was the first suspect. However, examinations by a specialist then showed that his left lung was under functioning as a result of COVID. After the diagnosis of Long COVID with fatigue and depression, Mr. Schmied was admitted to Klinik Barmelweid.
<img src="https://adm.altea-network.com/assets/5ceaba61-bb49-4295-8010-1d9e318f50bd?width=668&amp;height=890" alt="Altea Stories 27 Hans Schmied Foto 8 Update" />
<label>Hans Schmied is President of the "GLEICH UND ANDERS Schweiz" Association, which aims to promote and support mental health for all. (Picture: private)</label>
The stay at Klinik Barmelweid brought Mr. Schmied back to life, step by step. In addition to a Long COVID clinic, he also attended group sessions for psycho education and was part of a group in which members dealt with their sensations of anxiety and panic. His psychosomatic complaints were treated with creative approaches, which led him to attend painting therapy and occupational therapy. The knowledge and awareness of not being alone was very valuable.
Resilience with the help of chickpeas
During his treatments in the clinic, Mr. Schmied also practiced self-reflection and self-care in order to increase resilience in his day-to-day life. To achieve this, Mr. Schmied learned the &ldquo;10 chickpeas trick&rdquo;, which he still uses successfully to this day. Ten chickpeas remind him every day of how important it is to know your own boundaries and how to avoid crossing those boundaries.
<blockquote>&ldquo;I taught myself about self-care and self-reflection&rdquo;</blockquote>
The trick with the 10 chickpeas or &ldquo;the balls of happiness&rdquo;
Mr. Schmied carries his &ldquo;balls of happiness&rdquo; (10 chickpeas) in his left pocket every day. They are intended to serve as a tool for him when he oversteps his limits. When he notices that he has exhausted himself in a situation and has reached his limits, he moves a chickpea from his left pants pocket to his right.
&ldquo;Taking time in the evenings to reflect on the day&rdquo;
In the evening, he counts the chickpeas in his left and right pockets and then looks back on the day in peace. This gives him time to analyze the &ldquo;unusual events&rdquo; or the situations in which he &ldquo;overreached&rdquo; and consider why he moved the chickpea from one pocket to the other. This allows him to plan his&nbsp;<a href="https://www.altea-network.com/en/long-covid/vademecum/fatigue/#pacing" target="_blank" rel="noopener" data-anchor="#pacing">pacing</a>&nbsp;or the energy reserves in more detail should this specific situation occur again.
<blockquote>&ldquo;I always have my chickpeas with me: they remind me to listen to my body and recognize my limits.&rdquo;</blockquote>
The importance of self-reflection and self-management
Mr. Schmied now knows the <a href="http://altea-network.com/en/vademecum/fatigue/#pem-post-exertional-malaise" target="_blank" rel="noopener">early warning signs of exceeding his limits</a> very well and is convinced that if he does not pay attention to these early warning signs, the next crash will not be far away. Today, he works as a peer worker with a workload of 40% and sometimes reaches his limits. In addition, he bears a great deal of responsibility with patients, which means that he has to repeatedly force himself to take breaks or is made aware of this personally by the head physician. And when all this fails, a chickpea makes its way from his left pocket into his right pocket and reminds Mr. Schmied once again of the importance of self-care and self-reflection in his daily life.
<img src="https://adm.altea-network.com/assets/4cbde4b9-205a-45d5-a583-5e63b0a1be90?width=1386&amp;height=924" alt="Altea Stories 27 Hans Schmied Foto 3" />
&nbsp;<label>Hans Schmied practices self-care and self-reflection also during his free time. (Picture: private)</label>

On balls of happiness and chickpeas, or the importance of self-reflection

There are a lot of different strategies for dealing with Long COVID. Monika Grossen has found a creative way of coping with the ups and downs of the condition

<div class="text pb-50 ">
Monika&rsquo;s story begins in February 2022. The acute infection was mild, but &ldquo;tiredness was already then very noticeable&rdquo;, she says. &ldquo;I didn&rsquo;t think about Long COVID at the time, though, and I soon went back to work.&rdquo; However, the fatigue was so severe that Monika, a social worker, couldn&rsquo;t concentrate and <a title="Thinking and perceptions disorders" href="https://altea-network.com/en/vademecum/thinking-and-perception/" target="_blank" rel="noopener">struggled with brain fog</a>.
</div>
<img src="https://adm.altea-network.com/assets/bbe5443f-c083-414a-8c99-2a5bfc3f992f?width=961&amp;height=961" alt="Schwindel" />
<section class="imageBlogStory pb-50 "><label>Vertigo (source: LoCo Diary, Monika Grossen)</label>
Monika&rsquo;s family doctor then recommended that she continue working at a maximum of 30%, and to be patient. However, returning to work didn&rsquo;t go so well, even with the reduced workload. &ldquo;I just didn&rsquo;t have any strength,&rdquo; Monika recalls. She was finally referred to the Long COVID clinic at the Inselspital Bern, where she is still receiving treatment. She was diagnosed with pronounced physical and cognitive fatigue.
Getting the best from each therapy
Since then, Monika Grossen has tried a variety of treatments: ergotherapy, physiotherapy, acupuncture, medical massage, and psychotherapy. &ldquo;I was able to benefit from certain aspects of all the therapies. For example, the ergotherapy was extremely helpful in teaching me about <a title="Pacing" href="https://altea-network.com/en/vademecum/fatigue/" target="_blank" rel="noopener">pacing and energy management</a>. Today, I&rsquo;m able to manage my energy better.&rdquo; The acupuncture and medical massage also helped with her well-being. It&rsquo;s important to find out for yourself what&rsquo;s good for you.
<img src="https://adm.altea-network.com/assets/1b41cd7f-700f-4779-ba2d-c3cb15035d8e?width=960&amp;height=960" alt="(m)eine Insel" /></section>
<section class="imageBlogStory pb-50 "><label>My island (source: LoCo Diary, Monika Grossen)</label>
Besides the &ldquo;classic&rdquo; therapy methods there was also another thing that helped Monika Grossen: a photo diary. She&rsquo;d been writing in a diary for quite some time, to keep an overview of her symptoms and to recognize a progression. &ldquo;I had the idea for the photos out of the blue, on my way to physiotherapy,&rdquo; she reports. &ldquo;I took out my cell phone and suddenly figured I could make my diary a bit more creative.&rdquo;
Pictures speak a different language
With the photos, Monika rediscovered an important resource in herself: creativity. &ldquo;Being creative makes me happy.&rdquo; Finally, she decided to publish the pictures that marked the stages of her illness and that were most formative for her in the "<a title="LoCo-Diary" href="https://larouxla.ch/2022/09/19/locodiary/" target="_blank" rel="noopener">LoCo-Diary</a>" (LoCo is short for Long COVID). &ldquo;The feedback I get is entirely positive,&rdquo; she says. &ldquo;That makes me really happy and encourages me in what I&rsquo;m doing!&rdquo; Pictures, after all, speak a different language than text or words, and you can express yourself differently.
<img src="https://adm.altea-network.com/assets/4a6286ad-57ad-41ae-ab01-daf5d0675808?width=240&amp;height=320" alt="Halber Mensch" /></section>
<label>Half a person (source: LoCo Diary, Monika Grossen)</label>
&ldquo;I don&rsquo;t know yet what will come out of it&rdquo;
Monika has now been documenting the progression of her disease in pictures since May 2022. &ldquo;The photos help me process the whole situation,&rdquo; she states. You can look back and see where you were. You can also see progress. It&rsquo;s also simply nice to use your own creative abilities and identify strength in that &ndash; especially in this generally very difficult situation. Taking photos can also be combined with being outdoors and going for walks, two things that also help Monika Grossen on her road to recovery and give her new-found strength.
She doesn&rsquo;t yet know where the diary will lead. One thing is clear, however: &ldquo;I definitely want to continue it until I&rsquo;m back to health again. And who knows, maybe something else will come out of it.&rdquo;
<img src="https://adm.altea-network.com/assets/0253998b-c626-4ad4-8169-9a60be80d2fe?width=961&amp;height=961" alt="Hoffnung" />
&nbsp;<label>Hope (source: LoCo Diary, Monika Grossen)</label>

“The pictures give me strength to deal with Long COVID.”

Living with Long COVID – what does it mean? This time Annette Scholer talks about her desire for lightness, and everyday obstacles like shopping.

Under the title &ldquo;My life with Mr. Long&rdquo;, Altea publishes a series of entries from Annette Scholer's Long COVID diary. Annette Scholer metaphorically describes her disease as &ldquo;Mr. Long&rdquo;, with whom she now has to live. Already released: &nbsp;<a title="Annette Scholer 1" href="https://altea-network.com/en/stories/annette-scholer-1" target="_self">Part 1</a>, <a title="Annette Scholer 2" href="https://altea-network.com/en/stories/annette-scholer-2" target="_self">Part 2</a>, <a href="https://altea-network.com/en/stories/annette-scholer-3" target="_blank" rel="noopener">Part 3, </a><a href="https://altea-network.com/en/stories/annette-scholer-4" target="_blank" rel="noopener">Part 4</a>
&ldquo;Recently I was at a concert. For the first fifteen minutes my frontal lobe didn&rsquo;t know what to do: how it should process the noise, the different sensations, the crowd. The endless sensations made my body feel the need to cry, but it couldn&rsquo;t.
That happens when my mind is overwhelmed or exhausted. I was able to enjoy the concert from a safe distance for about an hour until physical exhaustion set in. My face turned back into a pinball machine. So we went to the exit and looked for a quiet place. I won't let myself be defeated, and I&rsquo;ll keep on trying!&rdquo;
<blockquote>&ldquo;I&rsquo;d like to have my mind clouded by something other than &lsquo;brain fog&rsquo; for a change.&rdquo;</blockquote>
&ldquo;Now and then there are situations where I would rather smoke a joint just to forget everything for a moment &ndash; especially when I&rsquo;m in pain. I'd sit singing on my little smoke cloud. My brain for once clouded by something other than &lsquo;brain fog&rsquo;. Everything would be light and colorful, and painless. That would be the life!
Or sometimes I just want to get completely wasted and experience the lightness of being. I think Mr. Long would be up for that. But the fear of the hangover the next morning keeps me reasonable. After all, my brain is in enough of a fog and we know it&rsquo;s not from drinking.&rdquo;
<img src="http://dev.movos.perfectartco.com:8055/assets/0586c7ac-335d-4114-ad32-a9f1a7158ff6?width=1440&amp;height=1920" alt="Img 5950 Web" /> &nbsp;<label>Annette Scholer writes about her everyday with &ldquo;Mr. Long&rdquo;. (Picture: private)</label>
&ldquo;As a single mother I've struggled and kept everything under control for years. Now I'm learning the hard way to accept help and relinquish control. If I don't do it, Mr. Long will force me to. Ever since Mr. Long came into my life, everyday things like grocery shopping have become a challenge.
Mr. Long doesn&rsquo;t like crowds much. It&rsquo;s just stress for him. So I have to think carefully about going to the grocery store for the weekly shop.
But then when we get together, all of a sudden everything starts to move at a snail&rsquo;s pace. We start an obstacle course. Pacing ourselves, we make a start. It&rsquo;s not long before there are people in my way. Oh great: exactly where I wanted to go. Duck head, apologize, dive on the product, bag it and onwards as fast as possible.&rdquo;
<blockquote>&ldquo;I only buy what&rsquo;s on my list, if I even manage that.&rdquo;</blockquote>
&ldquo;The chattering people and all the different noises are hard for me. I have to recognize when my body suddenly starts getting weaker and needs a break. Not even half of the shopping list is in the basket. Time to appease Mr. Long again and make a deal. I agree to leave the store as fast as possible. That means I don&rsquo;t have time to buy anything else that jumps out at me. I rush through the shopping list and head to the counter. Once again, Mr. Long has helped me avoid buying too much.
Before reaching the counter, I size up which queue will take the least time. Now just a quick chat with the nice cashier without pausing to draw breath and then, already flagging in the store, just barely pack away the shopping and off to the car. Then I put the shopping into the trunk, get behind the wheel and breathe deeply. Finally, peace, I come down a little and wait until I have enough strength to drive out. Made it!&rdquo;
&raquo; to&nbsp;<a title="Annette Scholer 1" href="https://www.altea-network.com/en/stories/annette-scholer-1/" target="_blank" rel="noopener">part 1</a>,&nbsp;<a title="Annette Scholer 2" href="https://www.altea-network.com/en/stories/annette-scholer-2/" target="_blank" rel="noopener">part 2</a>,&nbsp;<a title="Annette Scholer 3" href="https://www.altea-network.com/en/stories/annette-scholer-3/" target="_blank" rel="noopener">part 3</a>&nbsp;and&nbsp;<a title="Annette Scholer 4" href="https://www.altea-network.com/en/stories/annette-scholer-4/" target="_blank" rel="noopener">part 4</a>.

“My life with Mr. Long”: diary of a patient – part 5

Living with Long COVID – what does it mean exactly? In her diary, Annette Scholer writes about wandering pain, messed up plans and mindfulness.

Under the title &ldquo;My life with Mr. Long&rdquo;, Altea publishes a series of entries from Annette Scholer's Long COVID diary. Annette Scholer metaphorically describes her disease as &ldquo;Mr. Long&rdquo;, with whom she now has to live. Already released:&nbsp;<a title="Annette Scholer 1" href="https://altea-network.com/en/stories/annette-scholer-1" target="_self">Part 1</a>, <a title="Annette Scholer 2" href="https://altea-network.com/en/stories/annette-scholer-2" target="_self">Part 2</a>, <a href="https://altea-network.com/en/stories/annette-scholer-3" target="_blank" rel="noopener">Part 3</a>
&ldquo;Mr. Long is once again asking me to write about him. Unfortunately, he really likes being the center of attention, and this has been happening more frequently recently. Previously, he&rsquo;d turn up really intensively maybe twice a week, meaning that I&rsquo;d need to take an entire rest day to recover. Now, almost every day is a surprise, and I don&rsquo;t like surprises. I&rsquo;d love to know what&rsquo;s going on and what I can do, but he just says 'you&rsquo;ve gotta be joking!'.
Mr. Long has been literally getting on my nerves for a while now. He usually makes himself at home near my spine, and he really knows how to push my pain buttons. Recently he&rsquo;s been making even more demands on my body, and has been making my entire back burn in pain. After he got bored of hanging out in the area between my lower back and ribcage, he made a beeline for my chest, right up to just below my neck. And he&rsquo;s not holding back.
I have to take painkillers to be able to tolerate the pain. When I was taking cortisone, things improved quickly. I took this course of treatment for almost two weeks. After the two weeks, I wanted to stop taking the cortisone since I was doing better. But Mr. Long took revenge. He doesn&rsquo;t miss a thing... So with cortisone, I&rsquo;ve been able to gradually reduce my pain killers again.&rdquo;
<blockquote>&ldquo;I take bets as to where the pain will turn up next.&rdquo;</blockquote>
&ldquo;I&rsquo;ve got a new business idea. I&rsquo;m going to set up a betting shop where people can place bets on where the pain will turn up next. Will he spread himself over my entire right leg tomorrow, or will he find it funny to return to my back? He also seems to like my face. He knows all of my body&rsquo;s weaknesses inside and out.
One thing that&rsquo;s new is that the left half of my face now has a mind of its own. Depending on the exertion, whether physical or mental, Mr. Long will take hold of my face and make me look old.
I&rsquo;ve already wondered whether to get a job as Frankenstein on the ghost train, seeing as one of my facial muscles sometimes contracts and swells, including my eye. That&rsquo;s the precursor to exhaustion. It&rsquo;s when I know I need to rest.&rdquo;
<img src="http://dev.movos.perfectartco.com:8055/assets/121ac742-87e3-4264-aae1-a45185a4b60a?width=1442&amp;height=1920" alt="Img 5490 Web" /> <label>Tensed side of the face with the left eye only half open. Annette Scholer records one of the described episodes in her car. (Picture: private)</label>
&ldquo;I&rsquo;m a perfectionist and I like everything to be clean, tidy and in its place. Discipline and a perfectly timed schedule used to be key pillars of my life. It was very rare that I&rsquo;d be late or have to cancel an appointment. As a single mom, you need to be a well functioning person who has everything under control; everything planned out and organized right down to the smallest detail.
So deviating from a schedule really stresses me out and throws me off balance. And then along comes Mr. Long to throw my whole well-planned life into disarray. Sometimes he turns a blind eye and allows me to go on a longer trip with my family. But I can only do this with a second driver. When it all gets a bit much for Mr. Long, he gives me a sign that it&rsquo;s time to hand over the keys. And I&rsquo;m happy to obey.&rdquo;
<blockquote>&ldquo;I feel like a pregnant woman &ndash; worn out and with no control over my own body.&rdquo;</blockquote>
&ldquo;Mr. Long and I have to deal with each other a lot. He demands more and more compromises from me. Once I&rsquo;m back home, my recovery phase can be veeery long. Then I go right back to zero, and I lie on my back feeling like a dead fly.
But despite everything, I don&rsquo;t feel unwell &ndash; more like a pregnant woman, worn out and with no control over my own body. With pregnant women, it&rsquo;s hormones that are out of control. With me, it&rsquo;s Mr. Long.&rdquo;
<blockquote>&ldquo;Mr. Long is fascinating, too: I&rsquo;ve never needed to get to know myself like this before.&rdquo;</blockquote>
&ldquo;Mindfulness has become really important: weighing up what&rsquo;s still possible and what can fit into the day, and otherwise taking a more relaxed approach to life. It&rsquo;s something my daughter is really pleased about: for her, it&rsquo;s new to have a mom who works differently to before, with a lot less conflict and arguments. My boyfriend finds me easier as well &ndash; I give in a lot more and let him get on with things.
I find Mr. Long exciting and fascinating, too. I said this to my doctor, who was astonished and just laughed. But when you have to really find out how you work and get to know yourself from scratch &ndash; which I've never actually done before &ndash; then the whole thing is really very interesting.&rdquo;
&raquo; to &nbsp;<a title="Annette Scholer 1" href="https://altea-network.com/en/stories/annette-scholer-1" target="_self">Part 1</a>, <a title="Annette Scholer 2" href="https://altea-network.com/en/stories/annette-scholer-2" target="_self">Part 2</a>, <a href="https://altea-network.com/en/stories/annette-scholer-3" target="_blank" rel="noopener">Part 3</a>

“My life with Mr. Long”: diary of a patient – part 4

Living with Long COVID – how does it feel? In her Long COVID diary, Annette Scholer writes about “emotional dementia”, changes in smell and irritating noise.

Under the title &ldquo;My life with Mr. Long&rdquo;, Altea publishes a series of entries from Annette Scholer&rsquo;s Long COVID diary. Annette Scholer metaphorically describes her disease as &ldquo;Mr. Long&rdquo;, with whom she now has to live. Already released: <a title="Annette Scholer 1" href="https://altea-network.com/en/stories/annette-scholer-1" target="_self">Part 1</a>, <a title="Annette Scholer 2" href="https://altea-network.com/en/stories/annette-scholer-2" target="_self">Part 2</a>
&ldquo;I turned 50 in December, and I&rsquo;d been looking forward to this milestone for a long time. I always thought: &ldquo;This is when I&rsquo;ll really get going and start to enjoy life to the full. Now it&rsquo;s my turn!&rdquo; But nine days after my birthday, I was caught completely off guard and everything changed. &ldquo;I just need to survive the obligatory little C-word episode and then everything can begin&rdquo;. That was how I saw things at the time, but then the sobering reality hit. It was no longer a case of getting going and enjoying life to the full.
Now I&rsquo;m happy if I have a day where I&rsquo;m not left gasping for breath from pure exhaustion. I've had the stuffing knocked out of me, and sometimes I&rsquo;m happy to still be able to make it to the toilet without help. Sometimes I wish that someone would chew my food for me and then feed it to me, like a bird. That&rsquo;s how weak I've now become.&rdquo;
<blockquote>&ldquo;When I&rsquo;m feeling bad, I could get a job as a wandering corpse on the ghost train.&rdquo;</blockquote>
&ldquo;I feel like a crunchy apple that&rsquo;s been cored to remove a part of my brain, the heart of my emotions and my get up and go. My emotions have just disappeared. I do cry sometimes, but I don&rsquo;t know if it&rsquo;s from exhaustion or frustration. When I&rsquo;m feeling bad, I could get a job as a wandering corpse on the ghost train. I don&rsquo;t look in the mirror very much &ndash; I don&rsquo;t want to shock myself.
<img src="http://dev.movos.perfectartco.com:8055/assets/0586c7ac-335d-4114-ad32-a9f1a7158ff6?width=1440&amp;height=1920" alt="Img 5950 Web" />&nbsp;<label>Annette Scholer, who fell ill with COVID-19 in December 2021, keeps a diary about her new life with &ldquo;Mr. Long&rdquo;. (Picture: private)</label>
&ldquo;If we go on a short trip out of the house (I&rsquo;m wiped out after three and a half hours at the most) and I start to feel bad, my boyfriend will drive me home. He&rsquo;s my savior in these situations. But when you&rsquo;ve got used to being the one at the wheel for over 30 years and driving is also part of your job, it&rsquo;s not easy.
My boyfriend has something else to contend with too, since I can&rsquo;t stand the way he drives. But he takes my criticism with a huge amount of patience and drives me safely back home. Walking short distances is something I can manage on my own, but otherwise I wait until I feel better again, which can take up to an hour.&rdquo;
<blockquote>&ldquo;I&rsquo;m like Siri: I can describe an emotion, but not experience it. I call it emotional dementia.&rdquo;</blockquote>
&ldquo;I don&rsquo;t feel angry with anyone or with my current situation. I&rsquo;m like Siri, the voice on the iPhone: she can describe an emotion but she can&rsquo;t experience it. That&rsquo;s what it&rsquo;s like for me too. I know that people can love each other, but I don&rsquo;t feel that any more. Compassion for others has gone as well.
It&rsquo;s like I&rsquo;ve forgotten all of the emotions. I call it emotional dementia in the hope that it will maybe go away again at some point. There are exercises you can do to help with dementia if you have people around you who know what to do. I don&rsquo;t think very much any more, as I find it too exhausting. I&rsquo;m pleased if the day comes to an end and I&rsquo;ve been able to make all the appointments that I had in my calendar.&rdquo;
<blockquote>&ldquo;Smells sometimes get so intensely stuck in my nose that I can barely get them out again.&rdquo;</blockquote>
&ldquo;I have a similar issue with smell and taste. It only works with strong smells, so I spend more time seasoning my food with herbs and pepper to get it to taste good. I can also smell citrus fruits. But sometimes I have a smell in my nose that I don&rsquo;t necessarily want. These smells get really intensely stuck in my nose and I can barely get them out again. And then my food tastes like sh...ugar. I know I can&rsquo;t get annoyed about it.
I&rsquo;ve also become sensitive to noise, and my daughter and my boyfriend often have to hear me tell them not to yell at me. The clanging of cutlery gets on my nerves, and loud cars, loud music, loud television and even loud breathing or eating is intensely irritating. Hustle and bustle and quick chatter is almost unbearable.&rdquo;
<blockquote>&ldquo;I take more breaks than before, and I listen to my body a lot more.&rdquo;</blockquote>
&ldquo;But Mr. Long has his good sides too. I&rsquo;m much more conscious of everything. I take more breaks than before, and I listen to my body a lot more. I can tell when things are getting too much for me now too, and I&rsquo;ll then try and delegate, which isn&rsquo;t easy for me at all. I like standing on the terrace and enjoying the blossoming trees, the bushes and the flowers. And I&rsquo;ve rediscovered writing as well. I love writing, but I ran out of ideas a while ago. I&rsquo;ve now got something I want to put down on paper again.&rdquo;

“My life with Mr. Long”: diary of a patient – part 3

Living with Long COVID – how does it feel? Annette Scholer provides insights into her “Life with Mr. Long” and the ups and downs that make up her everyday life.

Under the title "My life with Mr. Long" Altea publishes in loose succession a series of entries from Annette Scholer's Long COVID diary. Annette Scholer metaphorically describes her disease as "Mr. Long", with whom she now has to live. Already released: <a title="Annette Scholer 1" href="https://altea-network.com/en/stories/annette-scholer-1" target="_self">Part 1.</a>
&ldquo;Mr. Long and I, we've been a &lsquo;dream team&rsquo; for 3 months now. We're virtually inseparable. There are times when Mr. Long is really, reeeaaally tolerant. Then I have my highs, and things are almost like they used to be.
But he can also act differently. It was especially brutal the day we were catching up with the entire family for my mother&rsquo;s birthday dinner. In the morning, everything was running like clockwork; I was even able to do a little workout. Then things started going downhill. Unfortunately, the washing machine mechanic arrived too early, and I was a bit busy preparing lunch. But for Mr. Long, this was waaaay too much work. He slammed on the brakes hard &ndash; so hard that it knocked me right out onto the sofa. Absolutely nothing was possible anymore. I lay there flat as a flounder. What now? I was supposed to be clean and dressed by 6 pm. Mr. Long just laughed it off. &lsquo;That's what you thought,&rsquo; he mused."
<img src="http://dev.movos.perfectartco.com:8055/assets/0586c7ac-335d-4114-ad32-a9f1a7158ff6?width=1440&amp;height=1920" alt="Img 5950 Web" /> &nbsp;<label>Annette Scholer, who fell ill with COVID-19 in December 2021, keeps a diary about her new life with &ldquo;Mr. Long&rdquo;. (Picture: private)</label>
&ldquo;Defeated, I lay there, and the tears just started flowing. Because of exhaustion? Or anger? Would I really need to cancel? I had been looking forward to the evening so much. So, I started negotiating with Mr. Long. After a long inner discussion, he relented and let me go to the dinner half alive.
It actually went pretty well. But after less than two hours, he knocked quietly at the door as if to tell me to be on my way. We had been sitting together so happily! But Mr. Long soon wore me down. &lsquo;Just try not to fall face-first into the French fries from pure fatigue and exhaustion,&rsquo; I thought.
So, we quickly gobbled down dessert and kept Mr. Long happy for a while. Then, making a completely exhausted face, tired from simply eating, I mentioned, with a glance at the clock, that the party was ending at 9 pm. Fortunately, everyone understood that it was time to go. The awful ride home almost did me in after that. I was barely able to drag myself to bed and just lie there.&rdquo;
<blockquote>&ldquo;The following weekend, Mr. Long took some time off &ndash; I was almost able to hit the ground running!&rdquo;</blockquote>
&ldquo;Well, that&rsquo;s just how it is with Mr. Long. But he took the next weekend off. I almost hit the ground running! I enjoyed this time away from him to the fullest, with lots of walking, taking breaks and enjoying nature.
Unfortunately, on Monday Mr. Long was back on duty. Everything was going well that morning until I had an important appointment. Just before it, everything stopped working: My arms and legs were tingling and I felt short of breath &ndash; I silently sat in the car, thwarted, and waited for things to get better. But they didn't for a very long time.
It wasn't until over an hour later that the blood started rushing to my arms and legs again and I managed to get to my appointment. After that I ate something light and waited for my boyfriend. Slow as a snail, I inched along with him through the aisles of the grocery store and then made it to the car. We waited until I felt better &ndash; cozy in the car and totally romantic together in the parking garage. After a while, I felt the energy coming back and I was able to tackle the drive home.&rdquo;
<blockquote>&ldquo;Mr. Long can't stand noise and clutter at all.&rdquo;</blockquote>
&ldquo;For the next few days, Mr. Long left me alone. It wasn't until Friday that he got back to business. I would have gladly gone to my Samaritans meeting and stayed there. But Mr. Long just wanted a free dinner and then to leave as soon as possible. He doesn't tolerate the noise of talking at all, and it's even worse in groups. It took a lot of effort to keep myself from falling face-first into the risotto.
So, I said my goodbyes almost soundlessly, in something that passed for words. Outside, I first rested on the edge of the fountain and then waited in the car for a suitable chance to get back home. After half an hour, I started to feel better, and I drove back without any problems.&rdquo;
<blockquote>&ldquo;Actually, Mr. Long has a lot of good qualities, too. Every now and then I think he's quite nice.&rdquo;</blockquote>
&ldquo;Now, it was time to take a break again. As I was going to bed, Mr. Long thought it would be a good idea for me to write a new story about him. I almost think he likes it! I was wide awake and just had to sit down at the computer to write this story.
Maybe we'll make it big one day &ndash; that would certainly be a good thing. Actually, Mr. Long has a lot of good qualities. He slows me down and forces me to keep calm and not think too much about tomorrow. Yep. Once in a while, I think he's quite nice, my Mr. Long.&rdquo;
&raquo; to <a title="Annette Scholer 1" href="https://altea-network.com/en/stories/annette-scholer-1" target="_self">Part 1</a>

"My life with Mr. Long": Diary of a patient – part 2

Living with Long COVID – what does it mean exactly? And how does it feel? In her Long COVID diary, Annette Scholer provides insights into her "Life with Mr. Long".

Under the title "My life with Mr. Long" Altea publishes a series of entries from Annette Scholer's Long COVID diary. Annette Scholer metaphorically describes her disease as "Mr. Long", with whom she now has to live.
"Mr. Long has had quite a hold on me for almost three months now and has been with me every step of the way. He sticks to me like glue and watches me like a hawk. I can&rsquo;t take a single step without him. Mr. Long is, at the moment, indestructible and stronger than I thought. The more I try to run away from him, the more he&rsquo;s glued to me. He's mercilessly knocked me out of the fast lane and onto the right-hand side of the highway &ndash; I&rsquo;m going at a snail&rsquo;s pace. Regardless of what I want."
<img src="http://dev.movos.perfectartco.com:8055/assets/0586c7ac-335d-4114-ad32-a9f1a7158ff6?width=1440&amp;height=1920" alt="Img 5950 Web" /><label>Annette Scholer, who fell ill with COVID-19 in December 2021, keeps a diary about her new life with &ldquo;Mr. Long&rdquo;. (Picture: private)</label>
"Refusing, resisting, or rebelling is mercilessly punished with immobility. It&rsquo;s like I&rsquo;ve been punched in the face. If I&rsquo;m lucky, I'll still have time to curl up on the sofa or go to bed. If Mr. Long is present, I have to find a place to sit down as soon as possible (but that's not going so well at the moment), and I also have to force myself to calm down and breathe in and out deeply. It takes 15 to 20 minutes for my arms and legs to stop prickling. It's only then that I can even consider getting back up slowly."
<blockquote>"I suddenly notice how stressed out people are around me now."</blockquote>
"When I have to walk very slowly and deliberately (Mr. Long wants me to), I notice how stressed out people are around me. To my chagrin, even seniors seem to be faster than I am. Most of the people I meet look stressed, have their cell phones in their hands, and stubbornly look ahead &ndash; almost as if they are afraid of being spoken to. They have no time and no peace. They eat, talk, and walk &ndash; all at the same time.
Listening to others can also be very exhausting. I notice how quickly people speak without taking a break. Taking a breath? No way. Maybe they have gills?! They probably don't have the time to speak any slower because they're already thinking about shopping, going home, doing this and that...
<blockquote>"Mr. Long is very, very strict with me."</blockquote>
"I don't trust myself with this kind of daily stress from "normal" people anymore. Mr. Long is very, very strict with me and would knock me out all day if I did that. I&rsquo;ve given up on making plans. Any wishes as to what I would still like to do, see, or experience have been pushed into the distant future. I only live in the here and now. What happened yesterday is of no interest to "Miss Memory". Same with what happens tomorrow. She just doesn&rsquo;t want to make any more effort.
Yep, my daily life has been radically reversed. Miss Memory only cooperates when she wants to and when I give her enough time to emerge from sleep mode in order to function. Otherwise, she simply refuses to get up."
<blockquote>"My partner notices the signs of exhaustion much sooner than I do."</blockquote>
"Mr. Long makes me go along with all his whims. My boyfriend is more tolerant. Sometimes he lets it go &ndash; but he looks at me with a stern expression... I can only imagine what he&rsquo;s thinking. That&rsquo;s when I realize myself that I&rsquo;ve taken on too much.
My boyfriend can tell when my body starts to struggle. Then he tells me: "In five to ten minutes, you won&rsquo;t be able to do anything." I don&rsquo;t notice the signs of exhaustion until much later. Fortunately, my boyfriend goes along with everything patiently, adapting to my pace. Not easy for a hyperactive person who's always on their toes.&rdquo;
<blockquote>"Letting go is better than saying: I want to this, I need to do that, I should do this..."</blockquote>
"How much longer is this going to take? I stopped thinking about it and started accepting it. I&rsquo;m learning to live for the day and taking things as they come. Which is difficult for someone who&rsquo;s always had everything under control.
I set myself one goal or one deadline for the day, especially to get some exercise. If I can get other tasks done after that, so much the better. Surrendering, letting go, trusting myself, and coming to terms with things brings me more energy than saying: 'I want to do this, I have to do that, I should still do this...' Just set small daily goals and everything will work out fine. I'm usually happy when I get little things done." 
&raquo; to <a title="Annette Scholer 2" href="https://altea-network.com/en/stories/annette-scholer-2" target="_self">Part 2</a>

"My life with Mr. Long": Diary of a patient – part 1

Vasileios Nittas is an epidemiologist researching Long COVID. He also had the condition himself. In this interview, he discusses his research and motivation.

​​​​Long COVID is known to be multifaceted. And the research is just as complex. Vasileios Nittas is a postdoctoral researcher at the University of Zurich and ETH Zurich and is assisting with two Long COVID projects. In an interview with Altea, he explains what is interesting and sometimes frustrating about this research. ​​

​​​​Long COVID research: exploratory, multifaceted and difficult | Altea​​​

Long COVID is currently a hot topic within global research. But who is actually carrying out this research? One such person is Vasileios Nittas. He is an epidemiology postdoc at the University of Zurich and has suffered from Long COVID himself.&nbsp;
Vasileios Nittas, what was the research into Long COVID like at the start?&nbsp;
When we first started the research, we had no idea of the direction we&rsquo;d end up going. Even though we knew there were probably long-term effects, we still didn&rsquo;t know what they involved. I would describe the research approach as exploratory and intuitive.&nbsp;&nbsp;
Even now &ndash; two years later &ndash; the evidence is still patchy. A lot of uncertainties remain. This is intensified by the fact that Long COVID is a multifaceted disease with a lot of different symptoms. This makes it even more difficult to come up with clear definitions.
<blockquote>
&ldquo;Long COVID is a multifaceted disease with a lot of different symptoms, making the research both difficult and exciting&rdquo;.
</blockquote>
Isn&rsquo;t that sometimes frustrating?<span data-ccp-props="{&quot;201341983&quot;:0,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559731&quot;:0,&quot;335559739&quot;:120,&quot;335559740&quot;:300,&quot;469777462&quot;:[3870],&quot;469777927&quot;:[0],&quot;469777928&quot;:[1]}">&nbsp;
It&rsquo;s true, it can be frustrating and chaotic at times, but it&rsquo;s also exciting, fascinating, and continually evolving, and this outweighs the negatives. I always keep patient wellbeing in mind. I want to make a contribution to improving their lives and to finding treatment options to help them with this condition. At the end of the day, I experienced for myself what it means to be affected by Long COVID, and this continues to motivate me today.
You experienced Long COVID yourself. How are you doing now, and what were, or are, your symptoms?<span data-ccp-props="{&quot;201341983&quot;:0,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559731&quot;:0,&quot;335559739&quot;:120,&quot;335559740&quot;:300,&quot;469777462&quot;:[2100],&quot;469777927&quot;:[0],&quot;469777928&quot;:[1]}">&nbsp;
I developed long-term effects at a very early stage of the pandemic. Nobody was taking about Long COVID at that time. The symptoms started shortly after my acute infection and lasted for several months. These included sensory disturbances, tingling, light dizziness, and headaches. I didn&rsquo;t know what was wrong with me and I went for a lot of tests. I&rsquo;m convinced that treatment would be handled better and in a more coordinated way today.<span data-ccp-props="{&quot;201341983&quot;:0,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559731&quot;:0,&quot;335559739&quot;:120,&quot;335559740&quot;:300,&quot;469777462&quot;:[2100],&quot;469777927&quot;:[0],&quot;469777928&quot;:[1]}">&nbsp;
Physiotherapy helped, and I&rsquo;m doing a lot better now. The symptoms do still occur from time to time, but less often than before. Long COVID is like a rollercoaster &ndash; and so is the research involved!
<blockquote>
&ldquo;I always keep patient wellbeing in mind &ndash; I want to make a contribution to improving their lives&rdquo;.
</blockquote>
When did you start carrying out research into Long COVID? Before or after you became unwell?&nbsp;
It was both at the same time. I&rsquo;d had the symptoms for around three or four months when I started working on the Long COVID projects, but I didn&rsquo;t think that what I was experiencing was Long COVID. I realized that later on.
<img src="https://adm.altea-network.com/assets/d50da48d-5b26-454c-ba36-97e186167164?width=612&amp;height=560" alt="Vasileios Nittas researches Long COVID for the University of Zurich and ETH. (Source: zVg)" />
Can you tell us more about the projects you&rsquo;re working on?&nbsp;
There are essentially two projects I&rsquo;m involved with. The first project is a <a href="https://www.bag.admin.ch/dam/bag/de/dokumente/mt/k-und-i/aktuelle-ausbrueche-pandemien/2019-nCoV/Literaturrecherchen/literaturrecherchen_long_covid_20220317.pdf.download.pdf/FOPH_LitReport_Covid-19%20LongCOVID_20220317.pdf">report for the FOPH</a>, which we produce every two months. This report summarizes all the new findings relating to Long COVID. We review new publications, read them, and extract the data we need for the report. It&rsquo;s mainly about reading the literature.&nbsp;&nbsp;&nbsp;&nbsp;
The second project is all about involving individuals affected by Long COVID in the research. To this end, we've launched the very first &ldquo;Citizen Science&rdquo; project, and together with 30 people affected by Long COVID, we&rsquo;ve tried to define the research priorities they consider the most urgent in relation to the disease. <a href="https://altea-network.com/en/blog/72-lccsb-paper/" target="_self">The project</a> has now been completed, and the <a href="https://link.springer.com/article/10.1007/s40271-022-00579-7">recommendations published</a>.
<blockquote>
&ldquo;There are still a lot of gaps that need to be filled in when it comes to treatment and rehabilitation&rdquo;.
</blockquote>
What have you learned so far?&nbsp;
To be honest, there are still a lot of gaps that need to be filled in. We know that around 20 percent of people end up developing longer-term symptoms following a COVID-19 infection. This depends on a range of different factors such as previous diseases, severity of the acute infection, age, etc.&nbsp;
We also know that Long COVID is a multifaceted disease. This makes it difficult to say: &ldquo;that&rsquo;s definitely Long COVID&rdquo;. Nevertheless, we already know a lot about the symptoms, and the literature paints a relatively clear picture in this area.&nbsp;&nbsp;
Things are a bit different when it comes to prevention and treatment, however. Here, we simply don&rsquo;t know enough to be able to make any concrete assertions. Recently, a few papers were published that looked into the influence of diet on Long COVID, but there&rsquo;s still insufficient evidence to confirm any official correlations. Our aim must be to find treatments and rehabilitation methods that improve the lives of those affected by the disease.
What are the plans for the future? How about international collaboration?&nbsp;&nbsp;&nbsp;
International collaboration is extremely important. We can all really benefit from one another. However, both of the projects I&rsquo;m working on are focused on Switzerland. Interest in the pandemic is decreasing, but it&rsquo;s important to stay on the ball and make sure we don&rsquo;t lose momentum in our research into Long COVID. We expect to see more studies published soon in the area of treatment and rehabilitation. We&rsquo;re looking forward to reading them!

“Long COVID is like a rollercoaster – and so is the research involved!”

Brigitte Post contracted Long COVID at an early stage and thought she was healthy after getting vaccinated but nevertheless relapsed. With patience and dignity, she is fighting for her quality of life.

Brigitte Post&rsquo;s Long COVID story has a lot of twists and turns. Altea has <a href="https://altea-network.com/en/stories/brigitte-post21/" target="_self">reported on her before</a>.
A brief review: Brigitte Post had already been infected with COVID-19 at the beginning of 2020 and was one of the first people affected by Long COVID in Switzerland. In the spring of 2021, a turnaround came with the vaccination, but this was only temporary. &ldquo;I feel like those healthy few weeks happened ten years ago &ndash; so much has changed since then,&rdquo; she explained over the phone. &ldquo;The symptoms came back suddenly after seven weeks, and worse than before. I was still running on about 30 percent of my energy,&rdquo; Post estimates. &ldquo;I was really miserable.&rdquo;
<blockquote>
&ldquo;In addition to treatment, it&rsquo;s important to consistently manage your energy.&rdquo;
</blockquote>
So, Brigitte Post began to inquire about H.E.L.P. apheresis. Apheresis, a type of blood washing process, filters clots and inflammatory substances from the blood, among other things, to help with recovery. Post hoped this would eliminate her vascular inflammation and inadequate tissue perfusion, which she blamed for her symptoms, even though the efficacy of apheresis for Long COVID has not yet been scientifically confirmed (see infobox). At the beginning of 2022, Brigitte Post was offered a treatment slot in Oerlikon, Switzerland. &ldquo;I was really happy; it was my lifeline during a bad time,&rdquo; she recalls.
Not just a &ldquo;quick fix&rdquo;
At the same time, she was aware that apheresis is not a walk in the park. &ldquo;It&rsquo;s not like fixing a car, where you go into the garage with a broken vehicle and come out with it all patched up,&rsquo; she explains. Rather, she said, you have to be able to cope with strenuous therapy sessions that last several hours. &ldquo;I always took healthy fruit juices with me so I could regain my strength after apheresis and make it home okay.&rdquo; In addition, stress reduction and consistent <a href="http://altea-network.com/en/vademecum/fatigue/#pacing" target="_self">Pacing</a> between sessions are needed to continue to support the healing process. &ldquo;Otherwise, you just undo the effects right away.&rdquo;
Add to this the fact that the costs of around CHF 2,000 Swiss francs per session are relatively high and quickly add up to a large amount of money. Whether your health insurance will cover the costs is currently uncertain. It may be possible to obtain a share of the costs through legal action. However, there are no precedents in this regard yet.
After 3 sessions, Brigitte Post noticed that things were starting to improve. After a total of 6 sessions at intervals of one week, the attending doctor prescribed a break. &ldquo;I probably would have kept going. But she said the body needed time to heal at this point.&rdquo; Improvement happened gradually, she said, not in one big leap.
Not cured, but a big impact
&ldquo;This procedure took me from 30 percent of my energy back to 70 percent,&rdquo; Brigitte Post summed up. &ldquo;Apheresis did not cure me. But it was an amazing kick-start for self-healing!&rdquo; She knows other patients who have felt a real upturn from apheresis. &ldquo;It doesn&rsquo;t help everyone, and for me the improvement was gradual. Not everyone reacts the same way.&rdquo;
<img src="https://adm.altea-network.com/assets/9843d4a0-eb35-4d14-ad07-b346ec7ab9eb?width=1920&amp;height=1440" alt="Img 9449 Web" />
Hours on the tubes: Brigitte Post during one of her apheresis sessions. (Image: private)
&nbsp;
Brigitte Post experienced several improvements: her forgetfulness decreased, her brain fog and circulation problems were gone, and her body's temperature regulation functioned normally again.
Problems with concentration
But not everything is back to the way it was before: A test at the Aarau Cantonal Hospital confirmed that <a href="http://altea-network.com/en/vademecum/thinking-and-perception/#energy-management-brain-performance-training" target="_self">neurocognitive problems</a> were still present. Even on the phone with her, after a certain length of time, I could feel that Post sometimes had to search for words, faltered, and lost her train of thought a bit. However, this was only noticeable if you knew about her illness &ndash; otherwise she&rsquo;s present, humorous and tells engaging stories.
Under control with a lot of effort
However, this quality of life &ndash; Brigitte Post talks about the 70 to 80 percent marker &ndash; comes at the price of strict discipline. This applies, for example, to energy management and nutrition. Post strictly abstains from alcohol. &ldquo;If I drink a non-alcoholic beer that has a trace of residual alcohol, I notice it immediately,&rdquo; she says. &ldquo;I have to make sure it&rsquo;s really one with 0.0% alcohol." Yesterday, she drank &ldquo;a mini-sip&rdquo; of R&ouml;teli cherry liqueur for the first time in months because she felt good &ndash; but she noticed it immediately in her head, even the day after.
<img src="https://adm.altea-network.com/assets/02caa19d-d092-497e-a18a-27f0009831e1?width=1440&amp;height=1920" alt="Img 5680 Web" />
&ldquo;Letting go of a performance mentality was something I had to learn.&rdquo; Brigitte Post is recovering after her apheresis sessions in a mobile home in Denmark. (Image: private)
Accordingly, Brigitte Post also had to take a step back professionally, and her own company is currently on hold for the most part. &ldquo;I&rsquo;m 60 years old now, and I&rsquo;ve been performance-driven for 58 years. &ldquo;Letting go of a performance mentality was something I had to learn.&rdquo; She got help from an occupational therapist. She also has her strategies all figured out. When her <a href="http://altea-network.com/en/vademecum/fatigue/#pem-post-exertional-malaise" target="_self">stress intolerance</a> was really bad, she made a note for herself that said, &ldquo;I&rsquo;m stress intolerant right now.&rdquo; She was able to let her wife know that her partner was &ldquo;out of order&rdquo; for a while. &lsquo;I didn&rsquo;t have the strength to explain.&rsquo;
Countless appointments completed
For Brigitte Post, it is reassuring to know that she can undergo apheresis if things get worse again. Because the past two years have been an energy-sapping odyssey. &lsquo;I added everything up: in 27 months, I completed 59 doctor and consultation appointments and 85 therapies, respiratory sessions, painting, occupational therapy, TCM and osteopathy... Unfortunately, many conventional medicine appointments were dead ends because there are no approved therapies yet. Complementary medicine helped me manage the symptoms and prevent worse ones from happening.&rsquo;
&lsquo;Now I&rsquo;ve thought through it again and digested it all,&rdquo; says Brigitte Post at the end of the conversation, sounding almost a little surprised. &ldquo;But I&rsquo;d rather look forward now. Toward Pacing, mindfulness, creativity, and joy of life.&rdquo;
You can already feel some of that: Recently, Brigitte Post has resumed her longstanding artistic work, which recently came to a standstill, and is now showcasing her silk artwork and personalized silk scarves on her <a href="https://www.post-direct.ch/postsilkart#c5">website</a>.
<img src="https://adm.altea-network.com/assets/7d40ecc4-78b3-48ef-86e8-16f7570210aa?width=2000&amp;height=1491" alt="W Detail Satin Gross1 Img 1779 Web" />
Incomparable color gradients, unique gloss: Brigitte Post is fascinated by silk fabric. (Image: private)

59 physician appointments, 85 therapy appointments and 6 apheresis procedures in 27 months

Despite warning signs, Jean-Luc Hadey wanted to maintain his performance at work – until a “crash” showed his limits. He is optimistically fighting his way back, step by step.

&ldquo;Long COVID comes along with you every day. We are not good friends. But nowadays we leave each other in peace.&rdquo; This is Jean-Luc Hadey&rsquo;s description of how he handles the syndrome. The K&auml;seaffineur (cheese-ripening expert) from Eastern Switzerland is very performance-driven by nature. So, even today, it&rsquo;s sometimes hard for him to accept that there are certain things that he can&rsquo;t do anymore or needs to take more time over. &ldquo;But they can be done differently!&rdquo; he adds.
For example, Jean-Luc Hadey loves the mountains. While he can&rsquo;t go hiking in the mountains anymore, he can still discover new routes on the flatlands. &ldquo;That&rsquo;s sensational,&rdquo; he smiles. Plus, Long COVID makes you more relaxed, to a degree: &ldquo;If the bus is already standing there, I know that I don&rsquo;t have to run &ndash; well, I can&rsquo;t. I don&rsquo;t let myself get nearly as stressed.&rdquo; On the other hand, he has lost a certain spontaneity.
<img src="https://adm.altea-network.com/assets/7d68929a-0e1b-44e5-aeb4-c2a27e8b06a5?width=4032&amp;height=3024" alt="Img 0540" />
Jean-Luc Hadey&rsquo;s face shows clearly how much he loves his job as a cheese-ripening expert. (Source: made available)
Rethinking life
Jean-Luc would never have said anything of the sort until recently. It wasn't until he <a href="https://altea-network.com/en/vademecum/fatigue" target="_self">&ldquo;crashed&rdquo;</a> with exhaustion that he came round to the idea that he would have to rethink his life. &ldquo;It was a normal day. I&rsquo;d been in Zurich and came home. When I walked up the three flights of stairs to my flat, I was completely out of breath. I lay down on the sofa and then couldn&rsquo;t do anything more.&rdquo;
Jean-Luc&rsquo;s Long COVID story begins a few months beforehand. He doesn't know where he caught it. The symptoms were similar to flu, with headaches and painful joints. After about three weeks he also <a href="https://altea-network.com/en/vademecum/taste-and-smell" target="_self">lost his sense of taste and smell</a>. &ldquo;That made my job as a cheese ripening expert and food scout very difficult. To keep up morale, I just kept on cooking exactly the same as before,&rdquo; he recalls. Luckily, he&rsquo;s got those senses back now.
<blockquote>
&ldquo;You become an expert on saving energy.&rdquo;
</blockquote>
&ldquo;I wanted to do it myself&rdquo;
Hadey quickly realized that he could no longer work as hard as he had before the infection. Over time, he began suffering from extreme tiredness and <a href="https://altea-network.com/en/vademecum/breathing" target="_self">breathing difficulties</a>. &ldquo;It was grueling,&rdquo; he says. Eventually he decided to go to his family doctor, who recommended the Long COVID outpatient program run by the <a href="https://www.rehazentrum-valens.ch/en/">Rehaklinik Valens (Valens Rehab Centre).</a> Only after two more months without any improvement did Hadey eventually decide to follow the recommendation.
&ldquo;I should have done it earlier. But you only realize that in hindsight,&rdquo; he reflects today. At the start of June last year, he finally went to the first of his weekly Long COVID therapy sessions. &ldquo;Ergotherapy in particular has taught me lots of simple tips for everyday life,&rdquo; says Hadey. For instance, nowadays he always has a backpack with him, he has bought a walking stick, he walks to the shops but takes the bus back, and deliberately plans breaks into his daily schedule. &ldquo;You pretty much become an <a href="https://altea-network.com/en/vademecum/fatigue" target="_self">expert on saving energy</a>.&rdquo;
<blockquote>
&ldquo;I wanted to get back to work full-time as soon as possible.&rdquo;
</blockquote>
Blocking out the warning signs
He started to get slowly, but surely, better. However, the pressure he put on himself to perform came back into play soon enough. &ldquo;I love my job. I love meeting the suppliers. That&rsquo;s why I wanted to get back to work full-time as soon as possible.&rdquo; So Hadey continually increased his workload, up to 80% of his normal hours.
Warnings kept on coming from his colleagues and family that he was irritable and sleeping badly, but he ignored them. &ldquo;What I said was yes, but what I did was a different matter.&rdquo; He thought he might be able to recover on holiday in Florida. But he never got there &ndash; his relapse got in the way, and he had to cancel his flight, which had been planned for February. Since then, Hadey has deliberately dropped down a gear and stopped pressuring himself. He doesn&rsquo;t want to risk crashing again.
<blockquote>
&ldquo;Now I listen to my heart, rather than just letting my ego decide.&rdquo;
</blockquote>
Acceptance is the be-all and end-all
&ldquo;Now I listen to my heart rather than just letting my ego decide,&rdquo; Hadey explains. &ldquo;The Valens Rehab Centre already gave me the tools to reshape my life. I just have to consistently put them into practice.&rdquo; He has also brought in a psychiatrist, who helps him to accept the situation and to not want too much too soon.
Hadey emphasizes that there is no shame at all in that. As he says, if you have a problem with your car, you go to a mechanic. If you need to sort out your thoughts, you get psychological or psychiatric help. The understanding and support that he&rsquo;s had from his family, friends and employer have been at least as important. &ldquo;I am extraordinarily grateful for that.&rdquo;

“We accept each other, Long COVID and I.”

Twenty-three years old and full of energy – then all of a sudden you’ve got to lower your sights: that’s how Long COVID made Marina Küng feel, but she also learned a few things in the process.

​​Long COVID can also affect young people, as Marina Küng, 23, found out. In Altea Stories, she shares her experience of dealing with the long-term consequences of COVID.​

​​Long COVID in young people | Reports from those affected | Altea​

&ldquo;You&rsquo;ve chosen a good day,&rdquo; says Marina K&uuml;ng, laughing on the phone. &ldquo;Today&rsquo;s fine.&rdquo; Often enough, the 23-year-old can sing a song about it. She is familiar with the rollercoaster ride, the famous &ldquo;COVID coaster&rdquo;. &ldquo;I&rsquo;m on third base five, advance almost to fourth, and then I&rsquo;m thrown back to first base.&rdquo; These setbacks are difficult and frustrating. &ldquo;It&rsquo;s like a terrible Advent calendar. I never know what to expect the next morning.&rdquo;
<img src="https://adm.altea-network.com/assets/df024746-8ce1-4d36-a411-a47e465266dc?width=1653&amp;height=1600" alt="Joyful: Marina K&uuml;ng on an Interrail trip in summer 2020. (Picture: private)" />
Marina K&uuml;ng is usually a paragon of joie de vivre. &ldquo;I want to bring a good mood to the world. This is my motto in life: infecting people with it!&rdquo; she says. Even now, she says she doesn&rsquo;t want it to get her down &ndash; even if she admits that &ldquo;Long COVID completely overwhelmed me.&rdquo;&nbsp;
Wanting too much &ndash; then came the crash&nbsp;
K&uuml;ng lives in Immensee in the canton of Schwyz. The trained chemist works in a pharmacy in Zug. She had supposedly recovered two months after being infected with COVID-19 at the end of March. She went back to full-time work and also moved. That was too much. &ldquo;I had a dizzy spell and had to go to hospital.&rdquo; After that, she was on full sick leave for an extended period of time.
<img src="https://adm.altea-network.com/assets/53696427-e176-49e9-9015-d8279d131dbb?width=1512&amp;height=2016" alt="Backpedaling after the hospital stay: even a short walk takes a lot of strength and effort. (Picture: private)" />
&ldquo;I didn&rsquo;t respect my body&rsquo;s signals enough,&rdquo; says Marina K&uuml;ng in retrospect. &ldquo;I thought I was OK, even though I was completely broken after a normal day at work.&rdquo; She is now able to <a href="https://altea-network.com/en/vademecum/work" target="_self">work </a>20 percent again, even if she sometimes has to cancel.&nbsp;
Neurological problems&nbsp;
Since the hospital stay, neurological problems have cropped up: an occasional numbness in the arms and legs. That&rsquo;s why Marina K&uuml;ng went to the Zurich University Hospital&rsquo;s Long COVID clinic. &ldquo;I felt very well understood there, which gives me hope and courage,&rdquo; she says. That&rsquo;s why she&rsquo;s now involved in two studies.
<blockquote>
&ldquo;Realizing that I&rsquo;m not alone, that many people feel the same way as me, reassured me.&rdquo;
</blockquote>
Marina K&uuml;ng had to learn how to do less. She, who used to always go full throttle. Now she has to admit that even shopping and doing laundry are challenging enough. She makes note of what feels good for her &ndash; acupuncture or very gentle yoga. Of the different things she&rsquo;s tried, she&rsquo;s found CBD drops the most helpful so far. &ldquo;It can also have a soothing effect on neurological complaints,&rdquo; says Marina K&uuml;ng. CBD helps her <a class="Hyperlink SCXW257453219 BCX0" href="https://altea-network.com/en/vademecum/sleep" target="_blank" rel="noreferrer noopener">sleep</a>, among other things. &ldquo;Often I&rsquo;m tired but still restless and have difficulty sleeping. CBD has helped to harmonize that.&rdquo;
The next step is physiotherapy, because sometimes one leg becomes somewhat paralyzed. It's then all about being patient with yourself. &ldquo;You can be frustrated for a moment,&rdquo; says Marina K&uuml;ng. &ldquo;What&rsquo;s going on with my body? What&rsquo;s wrong?&rdquo;&nbsp;
Fortunately, no doubters&nbsp;
&ldquo;I&rsquo;m lucky that my environment is very understanding, both privately and professionally,&rdquo; says K&uuml;ng. &ldquo;I don&rsquo;t know if I would have survived this crazy time so well otherwise. If there were still doubts and problems with my health insurance company, that would be inconceivable.&rdquo;
<blockquote>
&ldquo;I realized that people like to be there for you!&rdquo;
</blockquote>
The young woman also had to learn to accept help. In the meantime, this has gotten easier: &ldquo;I realized that people like to be there for me!&rdquo; It&rsquo;s a beautiful insight in all the sadness. And K&uuml;ng also learned to question the ubiquitous pressure to perform.&nbsp;
New self-worth found&nbsp;
&ldquo;If I do something, I&rsquo;m good; if I don&rsquo;t, people look down on me, I always thought,&rdquo; says K&uuml;ng. Linking one&rsquo;s own self-worth to performance is problematic. &ldquo;I&rsquo;m just as good when I&rsquo;m doing less than usual. My body has just enough to do,&rdquo; she says. It almost sounds as though she&rsquo;s been able to draw some positive things from the involuntary lessons of the past few months. &ldquo;Absolutely!&rdquo; replies Marina K&uuml;ng with conviction. &ldquo;Certain things that happened to me also taught me a great deal.&rdquo;

An experience with Long COVID: “People like to be there for you.”

Between melancholy and new hope: Sibylle Imobersteg has been fighting Long COVID for more than a year now, experiencing both setbacks and successes.

​​​Energy management, setting priorities and breath training – these are the tips Sibylle Imobersteg gives to others with Long COVID. The organizational consultant has been suffering from the illness for more than a year and spoke with Altea about her experience.

nergy management for Long COVID patients | Breath training | Altea​​

December 2020: Sibylle Imobersteg* and her colleagues are wondering whether or not they should hold their meeting in person. After some back and forth, they decide to go ahead with it but do so in a large room, which they air out regularly, every half hour.&nbsp;&nbsp;
Unnoticed in the hustle and bustle of the holidays&nbsp;
Despite taking precautionary measures, Sibylle and two other participants tested positive shortly afterward. Although she had only mild symptoms, such as dizziness and a higher temperature, she knew that something was wrong. &ldquo;My body was fighting something totally new,&rdquo; she recalls. Owing to the stress of the holidays, Sibylle hadn&rsquo;t noticed just how exhausted she was at the time. It wasn&rsquo;t until she returned to work that she noticed she was having trouble concentrating and &ldquo;couldn&rsquo;t focus on multiple trains of thought at once&rdquo;.
<blockquote>
&ldquo;My body was fighting something totally new.&rdquo;
</blockquote>
A difficult farewell from her practice&nbsp;
As a systemic organizational consultant and coach, this kind of thinking is a key skill. She explains: &ldquo;In a consultation, you need to be attentive and present while keeping several things in mind at once. For example, you have to observe the client&rsquo;s various verbal and non-verbal cues, and be mindful of your own reactions while, at the same time, starting to think about a suitable method for finding a solution.&rdquo; In light of this, it wasn&rsquo;t long before she decided to hand over many of her clients to fellow consultants at her joint practice, saying her calendar was full. &ldquo;Which was also true, in a sense,&rdquo; adds Sibylle. She then tried to increase her workload a little again, but this resulted in several breakdowns and depression. Although Sibylle has now managed to get back on her feet, she ended up surrendering her practice rooms a week ago. &ldquo;It&rsquo;s a big farewell. I actually wanted to gradually reduce my workload until I turn 70,&rdquo; says the 62-year-old. &ldquo;Now I&rsquo;m working 20%.&rdquo;&nbsp;&nbsp;
Whenever Sibylle has an appointment with a client nowadays, she makes sure to keep one day free beforehand and two days free afterward. She takes the day before to spend some time in the great outdoors and focus on the job at hand, while the days after the appointment are reserved for recovery. Sometimes she needs them, sometimes she doesn&rsquo;t. Planning them in is part of her energy management.
<blockquote>
&ldquo;If I know I&rsquo;m seeing a client, I keep days free before and after the appointment.&rdquo;
</blockquote>
Consistent energy management&nbsp;
<a href="https://altea-network.com/en/vademecum/fatigue" target="_self">Energy management</a> was prescribed for her in a Long-COVID consultation at the University Hospital Zurich. In the four individual sessions, she addressed questions such as: &ldquo;How do I approach the week ahead of me? The day ahead of me? My energy levels? How do I decide? How do I pluck up the courage to cancel?&rdquo; Although Sibylle already knew a lot about self-management and self-leadership because of her job, she says: &ldquo;I got to know myself better through energy management. Now I know that I have to include buffers if I want to do something. This prevents me from becoming overexerted.&rdquo; Sometimes, it&rsquo;s the little things that make life easier. For example, she leaves her heavy skillet on the stove instead of putting it back in the cupboard after each use.&nbsp;&nbsp;
As long as Sibylle can plan her days, she can cope quite well now. &ldquo;I&rsquo;ve lost about 80% of my fitness since having Covid,&rdquo; she estimates. A neurological examination shows that her brain is mostly functioning normally &ndash; apart from a slowed reaction time.&nbsp; She&rsquo;s not surprised by this: &ldquo;If something doesn&rsquo;t go as expected and I&rsquo;m rattled, I get short of breath or I get angry and start yelling. In such situations, Sibylle finds cardiovascular breath training helpful, which she discovered through her Pilates teacher.
<blockquote>
&ldquo;I&rsquo;m easily rattled when something doesn&rsquo;t go as expected.&rdquo;
</blockquote>
Diagnosis: severe fatigue&nbsp;
What the neurological examination also confirmed was severe <a href="https:/altea-network.com/en/vademecum/fatigue/" target="_self">fatigue</a>. &ldquo;Even though it seemed &lsquo;logical&rsquo;, it&rsquo;s hard to see this diagnosis in black and white,&rdquo; she says, deflated. But because her cognitive abilities are good and she consistently uses energy management strategies, the doctors have given Sibylle a good prognosis. She will discuss the results with her doctor and now has to &ldquo;get her bearings again&rdquo;.&nbsp;&nbsp;
Somewhat wistfully, she adds: &ldquo;It&rsquo;s sad to realize that I just can&rsquo;t do certain things anymore. I feel defeated.&rdquo; Recently, she let her niece talk her into going horseback riding &ndash; and it&rsquo;s moments like these that are all the more encouraging. &ldquo;After spending that hour on the horse, I felt lucid for six hours.&rdquo; Sibylle feels this leap to being &ldquo;lucid&rdquo; very clearly in each case. And because this feeling is so liberating, she would love to go riding again more often; but she doesn&rsquo;t dare to. Going on vacation also seems impossible at the moment. &ldquo;I would need someone to take me by the hand, organize everything and be able to deal with it when I don&rsquo;t feel like doing anything.&rdquo;
<blockquote>
&ldquo;The conservation group offers me an incredible amount of support.&rdquo;
</blockquote>
Nature is her medicine&nbsp;
Sibylle has found that &ldquo;someone&rdquo;, at least to a certain extent, in the local conservation group, where she has been helping since lockdown. &ldquo;As a result, I&rsquo;ve become very socially integrated. The group offers me an incredible amount of support.&rdquo; When her physical condition permits, she can engage in physical activity, such as tending hedges. And if she can&rsquo;t do this, she helps out with something else. &ldquo;The situation is ideal,&rdquo; says Sibylle.&nbsp;&nbsp;&nbsp;
&ldquo;It does me so good to be outside,&rdquo; she adds. Which is why she&rsquo;s been doing wildlife watching for a while now and has a wildlife camera set up in her backyard. She is also taking an online course about bird call. &ldquo;It&rsquo;s wonderful at this time of year, in the spring,&rdquo; she says enthusiastically. &ldquo;I sometimes even sleep outside under the open sky in the summer.&rdquo;
<img src="https://adm.altea-network.com/assets/dd01c484-8c11-460a-8ad3-cf122740c92c?width=969&amp;height=1432" alt="Spring is a great time to snap beautiful shots with the wildlife camera. (Image: private)" />
*Name changed by the editing team. Real name known.

“I’m getting to know myself better through Long COVID”

Despite having contracted Covid at work, Alba had to resign and now lives off her own savings.

Alba Rossi* worked as a beautician in the center of Rome. The story of her illness starts one day at the end of July 2021 when she wakes up with a sore throat and fever. She takes a swab test, which comes back positive next day. COVID-19 is not the same for everyone, but for Alba it has a devastating impact. For one week her fever does not drop below 39.9 Celsius degrees and she loses 5 kilos. This kicks off an ordeal with a range of 20-30 symptoms that alternate for over a month. Her lungs and intestine are affected, among other organs, and have to be treated with cortisone. The psychological part also takes its toll: The shortness of breath and resulting claustrophobia are scary. Isolation and loneliness leave marks you can't see, but they harm you. Alba tests positive four times in 35 days so she has to stay in isolation for two months in total.
<blockquote>
"On a mental level, Covid marks your soul; you are super scared, and it scars you inside."
</blockquote>
Recovery from Covid is long. The symptoms disappear, but very slowly, and only to make way for an overwhelming fatigue that afflicts Alba. Once Alba is negative again, she goes back to work, despite the shortness of breath and fatigue, which continue. Alba struggles on but has to take breaks to get her breath back and alleviate the pain. Her work colleagues don't take into account what it means to be tired and fatigued; they don't see the tendons that cause her great pain, but above all they don't make an effort to understand Alba's situation.&nbsp;
The physiological and psychological pressure force the 40-year-old to resign from her job (moreover safe), where she had first contracted the illness. Alba says: "I had to reinvent my life, think about what work I would be able to do now, with the ever-present fear of failing."
<blockquote>
"After Covid, there is another monster that hits us: ignorance."
</blockquote>
"Before Covid, I was someone who was very secure in my life," explains Alba. "I'm not like that anymore." From cheerful and joyful, Alba's mental situation has caused her to become quiet and placid, for the most part socially isolated. "My life is based on 'who's there'." When you say COVID-19 people freeze, they take a step back and seem to think 'keep your distance'." People don't really talk about Long COVID though: "Nobody talks to you about Long COVID; nobody warns you about what might happen to you," says Alba. The situation is also difficult for Alba financially: without work, she is living off her savings.
<blockquote>
"Nobody talks to you about Long COVID; nobody warns you about what might happen to you."
</blockquote>
"The only positive note in the story," says Alba "is that you get to know the people who really love you, your true friends with a capital F." Originally from Umbria, Alba doesn't have any family in Rome. Only with the help of her partner, whom she lives with, and her few true friends, has she managed to overcome the isolation and gain strength. Furthermore, Alba has had the good fortune of having a caring and understanding doctor, whom Alba calls "an angel." "The doctor never abandoned me; we would talk to each other on video calls. He sometimes also called me from the beach, during time off," recalls Alba.&nbsp;
Alba is trying to maintain her positivity even though her symptoms have not disappeared completely. Besides friends, Alba's support system also includes an online group, where she can vent and let off steam, and find advice and empathy. Today, Alba is facing Long COVID step by step: "In Rome they say: 'Rome was not built in a day.' This is my attitude for living life and how I maintain trust." In summary, small steps and small victories help to cope with Long COVID.
*Name changed; the real name is known to the editorial team

"I can't understand the ignorance towards us people affected affected by Long COVID"

What is it like, as a family doctor, to be confronted with patients with long COVID? A general practitioner tells.

​​Post COVID is also new for doctors. But what is it actually like as a family doctor to be confronted with patients with Long COVID? A general practitioner shared her experience with Altea.​

​​Long COVID in General Practitioners' Offices | A field report | Altea​

"It would have been more difficult for me in an individual practice," says Sabrina Guggacher*. The family doctor works in a group practice. "There is an intensive exchange there that helps." Guggacher's example shows: The new syndrome brings with it countless challenges, not only for those affected by Long COVID, which may push some to their own limits. The situation can also be difficult for general practitioners.
The exchange with colleagues gives Sabrina Guggacher the security that she is on the right track. "As a family doctor, there is always a slight element of fear: Am I missing something? Do I have to clarify anything else?" she says. A good team helps here - and in some cases a second opinion from specialists.&nbsp;&nbsp;
Happy about the long COVID consultations&nbsp;
Sabrina Guggacher had the first patient with Long COVID in September 2020. "Long COVID was not a big issue at the time. So we went looking, we checked the lungs and the heart", she reports. When various hospitals opened Long COVID consultation hours a few months later, it was also a relief for the family doctor. She sent there her two patients with Long COVID and was happy to receive confirmation that she had made no mistakes.
"The patients found these consultation hours to be positive," says Guggacher. "People also work there who are affected themselves and therefore contribute with their own experiences." After the appointment with the specialists, Sabrina Guggacher remains responsible for long-term support. "My role as a family doctor is then more to slow down the drive. It is important not to exhaust yourself, to include breaks", she reports.&nbsp;&nbsp;
One death and two long COVID cases&nbsp;&nbsp;
Most of the cases of COVID-19 that Sabrina Guggacher looked after were mild, which she is very happy about. One patient deteriorated rapidly and died within three days in the intensive care unit. "That was my worst experience with COVID-19." And then just two confirmed cases of Long COVID.&nbsp;&nbsp;
"Sometimes the patients were very well informed. For me as a family doctor, it was very challenging to always be up to date, as far as it is possible" admits Sabrina Guggacher. So she also learned from the patients, but had to separate useful knowledge from pseudo-knowledge.
<blockquote>
&laquo;This is a completely new situation. I cannot rely on old knowledge. "&nbsp;
</blockquote>
"COVID was a completely new situation," says Guggacher. Otherwise she can rely on old experiences - in this case it didn't work. "So I had to look at each case individually and keep saying: 'I just don't know!' ". This also applies to the patient side: Sometimes Sabrina Guggacher is confronted with expectations that are not realistic.&nbsp;&nbsp;
Never doubted Long COVID&nbsp;&nbsp;
People affected by Long COVID often report that they do not feel that their doctors are taking them seriously. Was Sabrina Guggacher also sometimes skeptical? "Never," she says. Of course, if you are tired and exhausted, we ask you how things are in general in life. "As a general practitioner, I ultimately have to form a holistic picture." But in her cases she was able to rule out other causes such as depression: "They are in the middle of life and really want to work again!" That is stressful enough for those affected. "There was no doubt about it."
<blockquote>
"They are right in the middle of life and really want to work again!"
</blockquote>
As a family doctor, she sees this as her job anyway: "We have to take the patients seriously in the boat in which they are currently sitting." After all, she also sees the other end of the spectrum: patients who completely deny the existence of COVID-19, who come up with conspiracy theories and become aggressive when it comes to vaccinations or masks. "I have to take these patients seriously, too." It is important to keep the openness and not to categorize patients.
Sabrina Guggacher tries to do everyone justice as much as possible - even if that sometimes only means being there patiently for patients who are in the dark. "I often can't just pull out a remedy and everything will be fine again." This is what distinguishes general practitioners from specialists who have a specific problem that they can then usually solve. "Long-term support is my everyday life as a family doctor. There is not always a solution for everything." Sometimes that's all she can do: "Endure the difficult situation together."&nbsp;&nbsp;
Cover picture: Symbol picture Adobe Stock
*Anonymity at Altea&nbsp;&nbsp;
&laquo;Sabrina Guggacher&raquo; is not the real name of the health professional presented here, but a pseudonym- The pseudonym is used to protect the person&rsquo;s privacy given the political character of the topic.&nbsp;
Altea publishes their story because we believe that the health professional&rsquo;s perspective is very important: on the one hand for other colleagues, on the other hand for affected people and their families.

"I learned to admit that I can't answer all of the questions."

Selina Rutz-Büchel spent five years preparing for the Olympic Games in Tokyo. But then came Long COVID. Now she’s reexamining her priorities in life.

​​​Anyone can be affected by Long COVID. That includes active athletes. In Altea Stories, Olympic athlete Selina Rutz-Büchel tells her story.​​

​​​Elite sport and Long COVID | A testimonial | Altea​​

At the end of our almost hour-long conversation, Selina Rutz-B&uuml;chel says a remarkable sentence: &ldquo;Subconsciously, I was convinced that it couldn&rsquo;t affect me.&rdquo; She knew that Long COVID existed. Her sister had dealt with similar effects a few months prior. &ldquo;But I&rsquo;m a young athlete &ndash; even though I knew about Long COVID, I was convinced that an infection would not cause me too much trouble.&rdquo;&nbsp;
This is hardly surprising, as many people get through an infection without any problems &ndash; and it would be difficult to find anyone in Switzerland who is fitter and healthier than the two-time European athletics champion (see &ldquo;Profile&rdquo; box). Hardly anyone looks after their body better than Selina Rutz-B&uuml;chel. So, if she is not primed to cope well with an infection, who is?
<img src="https://adm.altea-network.com/assets/4b0ba9c4-2312-49ec-9ca4-1db8593b4907?width=1920&amp;height=1280" alt="A well-conditioned model athlete: Selina Rutz-B&uuml;chel during a training session. (Picture: Diego Menzi)" />
&ldquo;It&rsquo;s an interesting psychological effect,&rdquo; she says. &ldquo;I&rsquo;ve noticed that many other young people also feel invincible in this sense.&rdquo; But it can affect anyone, regardless of your fitness level. This provides comfort &ndash; no one is &ldquo;to blame&rdquo; for suffering from Long COVID &ndash; and a warning: no one is immune to the insidious long-term effects.
Selina Rutz-B&uuml;chel fell ill at the beginning of April. She had a mild case, recovered quickly and was optimistic that she would soon be able to get caught up on her training. The results of a heart and lung health check were also positive.&nbsp;
&ldquo;Sometimes you have to let your frustration out&rdquo;&nbsp;
The first setback came 10 days later: she had a sore throat, felt tired and had to stop training. So, Rutz-B&uuml;chel tried to take a more leisurely approach to her recovery. However, two weeks later it hit her again: "Suddenly, I couldn&rsquo;t do anything anymore. I was totally exhausted, even drained, in a completely disproportionate way.&rdquo; This phase was very difficult because it slowly dawned on her that she would have to let go of her Olympic dream.&nbsp;
She has worked through her disappointment since then. How did she do that? &ldquo;By being honest and allowing myself to feel what I was feeling &ndash; sometimes you have to let your frustration out!,&rsquo; says the top athlete.
<img src="https://adm.altea-network.com/assets/ab4f8981-2102-419d-9ec1-19cafa96d367?width=2048&amp;height=1536" alt="Looking on the bright side: due to her illness, Selina Rutz-B&uuml;chel now has more time for gardening. (Picture: private)" />
Eventually, Selina Rutz-B&uuml;chel began to look on the bright side and develop a sense of gratitude. &ldquo;During my five years of preparation, I learned so much, grew as a person and overcame many challenges. These experiences are still valuable for me, even if they didn't culminate in the way I'd hoped.&rdquo;&nbsp;
For the first time in years, Rutz-B&uuml;chel was able to visit her family&rsquo;s holiday home in Ticino in the summer and have plenty of time to herself. This allowed her to reflect on questions that would otherwise be neglected: what is important to me in life? Which path do I want to take? She is motivated by this new sense of focus.
<blockquote>
&ldquo;I've had to relearn a lot.&rdquo;
</blockquote>
The 800-meter runner also got to know her body again. &ldquo;I've had to relearn a lot of things,&rdquo; she says. In the past, her cardiovascular system was always the limiting factor during recovery. But now her nervous system seems out of sync. Activities that require a lot of cognitive effort really wear her out. &ldquo;This is a completely new sensation for me.&rdquo; This is consistent with what we know about Long COVID, which turns many established certainties upside down.&nbsp;
The major role played by her cycle&nbsp;
She learned to interpret her body's signals differently. During her period, each day often feels like a relapse: she feels worse, and new symptoms, fever and limb pain emerge. &ldquo;Being able to put things into perspective helps me. It doesn't come out of nowhere in the same way. I don&rsquo;t have to think: there&rsquo;s no end in sight,&rdquo; explains Selina. This will enable her to cope better in the future.
<img src="https://adm.altea-network.com/assets/e01e5864-5592-4526-86a2-76306883f3b3?width=1024&amp;height=682" alt="That&rsquo;s where she wants to get back to: Selina Rutz-B&uuml;chel in the Letzigrund stadium during the 2018 championships. (Picture: Weltklasse Z&uuml;rich/Urs Jaudas)" />
After a difficult phase in which she learned to accept her situation, Selina Rutz-B&uuml;chel has found her motivation again. The next Olympic Games will take place in three years &ndash; Paris 2024. One month before she became infected, Rutz-B&uuml;chel decided to continue until then. After much deliberation, she maintains that: &ldquo;I still want to go to Paris!&rdquo; However, how long it will take her to return to her old level is completely unclear. &ldquo;My body sets the pace. I can&rsquo;t make any plans.&rdquo;&nbsp;
Header image: Weltklasse Z&uuml;rich 2019/Felix Walker

“Due to Long COVID, I had to get to know my body all over again”

Tim is 10 years old and suffers from Long COVID. He was the first child with this diagnosis to be treated at Münsterlingen hospital. His mother tells the story.

​​Children can also be affected by the long-term effects of the Coronavirus – albeit less frequently than adults. In the Altea Stories, people tell their own personal story of Long COVID.​

​​Kids living with Long COVID | Parents share their stories | Altea​

&ldquo;Tim* was always a very good, hard-working student,&rdquo; says his mother. &ldquo;Today, a lesson from distance learning is often too strenuous.&rdquo; The family is concerned about the risk of Tim missing too much teaching and having to repeat a class. &ldquo;That would be the worst for him,&rdquo; says Claudia Stettler*. She therefore tries to teach her son as much as possible at home. Whenever possible, they learn math, English and German together.&nbsp;
Schools show flexibility&nbsp;
&ldquo;The school was very understanding right from the start and gave us all the teaching materials for home.&rdquo; Distance learning also works flexibly. If Tim feels fit enough to take part, he can just give the teacher a quick call and be there. He currently does this about twice a week. Often, however, the headaches and aching limbs are just too severe.
<blockquote>
&ldquo;The important thing is to learn to accept Long COVID and to make the best of it.&rdquo;
</blockquote>
Playful therapy is good for you&nbsp;
Tim currently undergoes physiotherapy three times a week. This gives him some structure to his day-to-day life again and is very good for him &ndash; not least because the interpersonal relationship between the physiotherapist and Tim works so well. &ldquo;The therapist makes the lessons very playful. It&rsquo;s nice to watch them.&rdquo;&nbsp;
Although Tim himself does not feel any of this yet, his pulse values have improved a little in recent weeks. &ldquo;Before, when performing the lightest activity, his pulse accelerated instantly to the level of an athlete in interval training,&rdquo; explains Stettler. &ldquo;Nevertheless, finding the right balance is not easy. Just a little too much effort and he&rsquo;ll be very exhausted.&rdquo;
<img src="https://adm.altea-network.com/assets/6fdea911-8370-49fc-a0f0-82894522deb0?width=5305&amp;height=3537" alt="The physiotherapist makes the lessons very playful. (Symbol image: Adobe Stock)" />
Challenge: being alone&nbsp;
Being alone is another challenge, in two respects: firstly, people living with Long COVID are often alone in their daily lives. Secondly, there are (fortunately) not many known cases of children suffering from Long COVID so far. This also makes you feel a bit left alone. The joy was all the greater when the whole class stood at the door a few days ago to say &ldquo;hello.&rdquo; &ldquo;That was a wonderful surprise!&rdquo; reports Stettler. It is precisely these small gestures that Tim&rsquo;s mother tries to incorporate into her everyday life. For example, they go to the hairdresser together, hang up a hammock in the garden, pick up a cheeseburger at McDonald&rsquo;s or invite a friend home. She wants to give her son &ldquo;some variety and a bit of normality.&rdquo;&nbsp;
To date, there have only been a few known cases of children with Long COVID. According to her mother, the information on the subject is correspondingly meager. Stettler therefore reads many articles and collects the information himself. She also came across Altea and got in touch with <a href="https://www.altea-network.com/en/stories/4-angelina-brupbacher-vanessa-kleeb-anonym" target="_self">Angelina Brupbacher and her son Mattia</a>. &ldquo;The two children get along really well! They&rsquo;ve never seen each other live, but they enjoy chatting with each other. Once they even played a computer game together. And for me, too, the exchange with Angelina is very valuable.&rdquo;&nbsp;
<blockquote>
&ldquo;The joy was great when the whole class stood outside to say &lsquo;hello&rsquo;.&rdquo;
</blockquote>
Enough of everything&nbsp;
Almost four months have now passed since February 16, 2021, the day it all began. &ldquo;At first, you think that can&rsquo;t be true. Then you wish it would stop. But the important thing is to learn to accept it and make the best of it.&rdquo; What remains for Tim are headaches and pain in his limbs as well as severe and rapid fatigue. &ldquo;I always feel like it&rsquo;s midnight,&rdquo; the 10-year-old describes his condition. His mother says: &ldquo;I admire Tim for putting up with all this and how patient he is.&rdquo; Nevertheless, the 10-year-old is slowly but surely becoming fed up with everything.&nbsp;
Despite all this, Stettler is convinced that we still have to remain optimistic. The family talks openly about new findings, opportunities, and associated risks. Openness is very important, believes Claudia Stettler: &ldquo;Children often know best what is good for them.&rdquo;&nbsp;
&nbsp;
*Name changed, real name known to the writers

“We want to give our son some normality – despite the Long COVID situation”

After suffering for well over a year, Brigitte Post is fine again today - the vaccination has taken her symptoms away.

Brigitte Post was one of the first to be infected with COVID-19. She was the first to share her story about Long COVID with Altea. And now there is very good news: Since the second vaccination, she is fine again. Read the update at the end of the article where she tells how she's been doing in the past two months.
In one way, Brigitte Post is a very atypical case of Long COVID. She is likely to have been one of the first people in Switzerland to be infected - over a month before the first officially confirmed case. And she began to suffer from symptoms of Long COVID at a time when no one had heard of the phenomenon.
Fungal tongue and rash
Switzerland was about to enter the first lockdown when Brigitte Post was sitting at home and her hair began to fall out. Then the sudden attack on the tongue, which had a fungal coating for days, soon followed by a rash all over the body. And all of this without getting an explanation or classification, and accordingly no perspective.
<blockquote>
"My hair fell out in clumps and I thought: 'Will I be bald for the rest of my life?'"
</blockquote>
Much of what Brigitte Post experienced is known today from other courses of Long COVID. For example, the ability to concentrate. "I'd print out an invoice, and then I'd print it out again in the afternoon. Or I'd put something to take away and then leave it anyway", she says. Then again: when she was acutely affected, little or nothing was known about all of this.
<img src="https://adm.altea-network.com/assets/19dcd15a-6cd5-49a5-afd9-502f367adb3a?width=1400&amp;height=830" alt="Ds C08820 Bearbeitet" />
Brigitte Post with her dog Abha, whom she rescued from Romania with her animal welfare foundation.
Helpful painting therapy
Among other things, painting therapy helped Brigitte Post with emotional processing. She painted a picture of what it was like before the illness. And then one thing about the turning point, the worst time in the hospital. "It was sad to bring it all up again - but very healing."
Put in the psycho corner
Something else that bothered Brigitte Post were the skeptical reactions - because her complaints are not visible from the outside. "I had the worst symptoms, later this insurmountable exhaustion - and then some would tell you that it was the flu or that I should take psychotropic drugs. What do you reply?" she asks rhetorically. Even in one of the specialized consultation hours she experienced that instead of the interdisciplinary care she had hoped for, psychotherapy was suggested to her.
<div><img src="https://adm.altea-network.com/assets/b52a6739-f3b6-490d-8412-4a672c0e58c4?width=1900&amp;height=926" alt="Lunge B P25 Jan2020" /></div>
<div>Diagnosis of "COVID pneumonia": Brigitte Post's lung x-ray from January 25, 2020</div>
<div>&nbsp;</div>
<div>
Salvation through diagnosis
The salvation finally came after a year. Because Post fell ill so early, she did not have a positive test; an antibody test months later came back negative. Finally she heard about a study at the <a href="https://www.unibe.ch/aktuell/medien/media_relations/medienmitteilungen/2020/medienmitteilungen_2020/ki_erkennt_covid_19_bei_roentgenbildern_zuverlaessiger_als_der_mensch/index_ger.html">University Hospital Bern</a>. Researchers there succeeded in analyzing X-ray images of the lungs with artificial intelligence, and did so in such a way that the method detects a COVID lung with 97% accuracy. Brigitte Post sent in her x-rays from January 25, 2020 - and received the confirmation in black and white one year after her infection: "COVID pneumonia."
<blockquote>
"It seems as if the inner struggle has stopped. I am grateful and extremely happy!"
</blockquote>
Back to 100% soon?
The relief was enormous, a "dam burst" for Brigitte Post. And she's getting better and better. She works 50%. It is an advantage that, as a self-employed communications consultant, she can organize her working hours freely. And she hopes to be able to return to full work as early as next month. It's still up and down after 14 months. However, she states "I have the feeling that I'm slowly rising. The waves are still there, but not as violently."
UPDATE: Turnaround thanks to vaccination
That was the state of affairs at the end of March 2021. A few weeks later, however, the setback came: "My cognitive problems have increased and the curve is going in the wrong direction," wrote Brigitte Post in mid-April, quite resignedly. She hasn't been able to work as planned yet. But a month later, the long-awaited turning point finally came. "There's good news!" writes Brigitte Post at the end of May. &laquo;The vaccination made me feel like a RESET. It got better after the first vaccination a month ago, and after the second vaccination on May 17, my condition improved significantly again." It seems as if the inner struggle has stopped. "It's a different attitude towards life, I can suddenly think again and have energy to live," writes Brigitte Post. "I'm grateful and extremely happy!"
This effect, the "reset", could be due to an immune modulation. You can read more about the question of a therapeutic effect of vaccination in the interview with Professor Jan Fehr.
</div>

UPDATE: The turning point thanks to the vaccination

​​There are cases where the COVID-19 vaccination has helped against Long COVID - one of them is that of Brigitte Post. She tells her story in an Altea story. Here you will find very personal insights into the experiences of people with the long-term effects of the corona virus.​

​​Does the COVID vaccination help with Long COVID? | Those affected report | Altea​

Brigitte Post was one of the first to be infected with COVID-19. She was the first to share her story about Long COVID with Altea. And now there is very good news: Since the second vaccination, she is fine again. Read the update at the end of the article where she tells how she's been doing in the past two months.&nbsp;
In one way, Brigitte Post is a very atypical case of Long COVID. She is likely to have been one of the first people in Switzerland to be infected - over a month before the first officially confirmed case. And she began to suffer from symptoms of Long COVID at a time when no one had heard of the phenomenon.&nbsp;&nbsp;
Fungal tongue and rash&nbsp;&nbsp;
Switzerland was about to enter the first lockdown when Brigitte Post was sitting at home and her hair began to fall out. Then the sudden attack on the tongue, which had a fungal coating for days, soon followed by a rash all over the body. And all of this without getting an explanation or classification, and accordingly no perspective.
<blockquote>
"My hair fell out in clumps and I thought: 'Will I be bald for the rest of my life?'"
</blockquote>
<span class="NormalTextRun SCXW100021640 BCX0" data-ccp-charstyle="jlqj4b" data-ccp-charstyle-defn="{&quot;ObjectId&quot;:&quot;51299cf3-8cdc-49ae-ac21-b42cf0838e19|61&quot;,&quot;ClassId&quot;:1073872969,&quot;Properties&quot;:[469775450,&quot;jlqj4b&quot;,201340122,&quot;1&quot;,134233614,&quot;true&quot;,469778129,&quot;jlqj4b&quot;,335572020,&quot;1&quot;,469778324,&quot;Default Paragraph Font&quot;]}">Much of what Brigitte Post experienced is known today from other courses of Long COVID. For example, the ability to concentrate. "I'd print out an invoice, and then I'd print it out again in the afternoon. Or I'd put something to take away and then leave it anyway", she says. Then again: when she was acutely affected, little or nothing was known about all of this.
<img src="https://adm.altea-network.com/assets/055b686b-b899-4559-91e6-db56b5eb1765?width=2288&amp;height=1520" alt="Brigitte Post with her dog Abha, whom she rescued from Romania with her animal welfare foundation." />
Helpful painting therapy&nbsp;&nbsp;
Among other things, painting therapy helped Brigitte Post with emotional processing. She painted a picture of what it was like before the illness. And then one thing about the turning point, the worst time in the hospital. "It was sad to bring it all up again - but very healing."
Put in the psycho corner&nbsp;
Something else that bothered Brigitte Post were the skeptical reactions - because her complaints are not visible from the outside. "I had the worst symptoms, later this insurmountable exhaustion - and then some would tell you that it was the flu or that I should take psychotropic drugs. What do you reply?" she asks rhetorically. Even in one of the specialized consultation hours she experienced that instead of the interdisciplinary care she had hoped for, psychotherapy was suggested to her.
<img src="https://adm.altea-network.com/assets/93c14abd-2991-4b86-897d-0cdbf5da3db6?width=undefined&amp;height=undefined" alt="Diagnosis of " />
Salvation through diagnosis&nbsp;&nbsp;
The salvation finally came after a year. Because Post fell ill so early, she did not have a positive test; an antibody test months later came back negative. Finally she heard about a study at the <a href="https://www.unibe.ch/aktuell/medien/media_relations/medienmitteilungen/2020/medienmitteilungen_2020/ki_erkennt_covid_19_bei_roentgenbildern_zuverlaessiger_als_der_mensch/index_ger.html">University Hospital Bern</a>. Researchers there succeeded in analyzing X-ray images of the lungs with artificial intelligence, and did so in such a way that the method detects a COVID lung with 97% accuracy. Brigitte Post sent in her x-rays from January 25, 2020 - and received the confirmation in black and white one year after her infection: "COVID pneumonia."
<blockquote>
"It seems as if the inner struggle has stopped. I am grateful and extremely happy!"
</blockquote>
Back to 100% soon?&nbsp;&nbsp;
The relief was enormous, a "dam burst" for Brigitte Post. And she's getting better and better. She works 50%. It is an advantage that, as a self-employed communications consultant, she can organize her working hours freely. And she hopes to be able to return to full work as early as next month. It's still up and down after 14 months. However, she states "I have the feeling that I'm slowly rising. The waves are still there, but not as violently."&nbsp;&nbsp;
UPDATE: Turnaround thanks to vaccination&nbsp;&nbsp;
That was the state of affairs at the end of March 2021. A few weeks later, however, the setback came: "My cognitive problems have increased and the curve is going in the wrong direction," wrote Brigitte Post in mid-April, quite resignedly. She hasn't been able to work as planned yet. But a month later, the long-awaited turning point finally came. "There's good news!" writes Brigitte Post at the end of May. &laquo;The vaccination made me feel like a RESET. It got better after the first vaccination a month ago, and after the second vaccination on May 17, my condition improved significantly again." It seems as if the inner struggle has stopped. "It's a different attitude towards life, I can suddenly think again and have energy to live," writes Brigitte Post. "I'm grateful and extremely happy!"

Florian Leitner plays handball in the highest Swiss League. A COVID-19 infection put him out of action for months. But now he is back again.

​​In the Altea Stories, people tell their very personal stories about the long-term consequences of the COVID. People affected, relatives and also experts have their say.

​​People affected by Long COVID tell their story | Altea​

The story of Florian Leitner is one that gives courage. Because today he is almost fully fit again and is playing sport at the top level. Something that would have been completely unthinkable just a few months ago.&nbsp;
Almost the whole team infected&nbsp;
Florian Leitner plays handball for GC Amicitia Zurich in Switzerland's top league. The day before a game in October 2020, he woke up with influenza symptoms and called the coach. He just laughed and said, "You got COVID!" The coach's phone had already been running hot that day: more than a dozen players and staff members had caught it at the same time.
<blockquote>
"Half an hour of training was like running half a marathon."
</blockquote>
After the ten-day isolation and a "hard influenza", the team was back. The task was to make up for what had been missed: three training sessions and two games within six days were on the agenda. While his teammates were getting back on their feet, Leitner noticed during the second game that the engine was no longer running.&nbsp;
Suddenly about to faint&nbsp;
In training sessions Leitner now had to drink twice as much, and one morning, after a quarter hour of light jogging, he was suddenly about to pass out. The common symptoms of Long COVID appeared: the feeling of not having enough oxygen when breathing, difficulty concentrating, and a huge need for sleep. The team doctor then checked Florian Leitner: his heart was fine, his lungs showed no abnormalities. It was only on the asthma test that Leitner suddenly reacted.
<img src="https://adm.altea-network.com/assets/e426c415-bb63-45eb-b91e-a69885dbce70?width=1512&amp;height=2016" alt="Personal balance: in addition to his physics and philosophy studies, Florian Leitner enjoys being outdoors. Here he is with girlfriend Oona. (picture: private)" />
The pneumologist prescribed a cortisone spray that should have eliminated the symptoms within two months. However, there was no improvement, and so Florian Leitner tried a breathing technique that a colleague had recommended to him: <a href="https://altea-network.com/en/vademecum/mental-health" target="_self">the Wim Hof method</a>.&nbsp;
Back in training after two weeks&nbsp;
And the almost unbelievable happened: "It went on for two weeks, and I was able to train everywhere again," says Leitner. "Soon I was making short appearances, and today I can play a whole half without any problems."
Florian Leitner does the exercise every morning on an empty stomach, lying in his bed, on the sofa or on the Yoga mat: breathe in deeply and out loosely 40 times. He holds his breath as long as possible during the last exhalation. That's just about it. "In the beginning, I couldn't hold my breath for much more than a minute. Now I'm at three and a half minutes," Leitner says. Add to that ice baths or cold showers. Even in January, Leitner went into the Limmat every day. "The longest bath lasted 10 minutes, at 5 degrees," he says.
<img src="https://adm.altea-network.com/assets/5f5c6fbe-b012-43b7-8858-63e07bcbe0f1?width=4000&amp;height=1824" alt="Icy bath in the Limmat: Florian Leitner (left) with his ice bath buddy Nizar. (picture: private)" />
The breathing exercise seems however to be decisive for the improvement. "When I felt markedly better, I paused the breathing exercises for two weeks while I continued ice bathing," says Leitner. And see, "I got worse again, had to take breaks, and could no longer exercise. This self-experiment confirmed that the improvement actually started because of the breathing exercises." When he resumed the exercises, he was back to full strength after two weeks. For Leitner, this is proof that the method works.&nbsp;
Passing on courage and knowledge&nbsp;
Whether such breathing training can help all people with Long COVID remains a hanging question. After all, the type and combination of symptoms can vary widely. "I am convinced that some affected people can benefit from breathing therapy, but probably not all," says pulmonologist <a href="https://altea-network.com/en/blog/60-exp-board-christian-clarenbach" target="_self">Christian Clarenbach</a>.
<blockquote>
"At first I could not even manage a minute, now I can hold my breath for three and a half minutes."
</blockquote>
Nevertheless, Florian Leitner's example is encouraging. There are increasing reports that breathing training can be very helpful for people with Long COVID. It does not necessarily have to be the method of Wim Hof, <a href="https://www.jala.ch/en/blog/2020/4/21/wim-hof-methode-vs-oxygen-advantage-k5g95">others can also be helpful</a>. This is also shown by Brigitte Post's experience with respiratory therapy or from <a href="https://www.tagesanzeiger.ch/neuer-therapie-ansatz-macht-long-covid-betroffenen-hoffnung-908199304635">Mount-Sinai-Hospital</a>. In Florian Leitner's case, the improvements were so striking that he is eager to share his experience.&nbsp;
For top athletes - and others affected people?&nbsp;
Recently, a case of Long COVID in top Swiss sports was reported publicly for the first time, using <a href="https://www.srf.ch/sport/allgemein/long-covid-im-spitzensport-jan-lochbihler-und-die-folgen-der-corona-infektion">Jan Lochbihler</a> as an example. Florian Leitner contacted him without hesitation and shared his successes. Perhaps the method will pave the way for other athletes to return to the top - and for other affected people to return to a pain-free life.

Back to top-class sport thanks to breathing technique

A hospital stay brought Esther Ebnöther relief. For now, she’s paying for it herself so as not to suffer further setbacks in the recovery process.

​​A hospital stay has alleviated the long-term consequences of the COVID for Esther Ebnöther. In Altea stories, she explains what her stay was like and how she is coping with Long COVID.​

​​​Hospital stay due to post-COVID – an affected person’s story | Altea​​

&ldquo;After another relapse, I reached a point where the balancing act between the symptoms caused by Long COVID and my job, where my workload was already reduced, was no longer sustainable.&rdquo; Esther Ebn&ouml;ther explains why she organized a stay at the &ldquo;Clinicum Alpinum&rdquo; five months after she was infected with COVID, even though she has had to pay for it herself for the time being, as her health insurance had not authorized treatment in a Davos clinic. The impact of the suffering was too great. At the beginning of March, she was finally able to start a four-week treatment.&nbsp;
Great progress made&nbsp;
The stay in the clinic was like balm for Esther Ebn&ouml;ther: conscious nutrition, phyto- and aromatherapeutics designed for COVID, inhalations, massages, plenty of exercise in the great outdoors and talking to other sufferers all had an impact, she says with relief. &ldquo;Fatigue in particular has decreased dramatically,&rdquo; says Esther Ebn&ouml;ther. And she learned to find answers to &ldquo;stupid questions&rdquo;. Having to repeatedly explain or even justify your own situation adds to strain over the long term.
<img src="https://adm.altea-network.com/assets/f933092e-f316-4f51-bf72-cb2e2540b85c?width=3744&amp;height=5616" alt="Extremely passionate: Esther Ebn&ouml;ther has been an ambitious accordion player for decades. (Picture: private)" />
Flashback: at the end of September 2020, Switzerland was still enjoying the relaxed feeling of summer before the second wave hit in October. Esther Ebn&ouml;ther, who is a passionate and ambitious <a href="https://www.srf.ch/radio-srf-musikwelle/volksmusik/esther-edith-haben-alles-im-griff">accordion player</a>, attended a yodeling concert. But some of the participants were sick, and many in the hall became infected &ndash; including Esther Ebn&ouml;ther.&nbsp;
A whole bouquet of symptoms&nbsp;
Severe limb pain was replaced by a long-lasting fever, head and neck pain and a heavy fatigue that forced Esther Ebn&ouml;ther to take to her bed. The next symptoms appeared and disappeared alternately: coughing, diarrhea, hair loss, a skin rash and oppressive exhaustion tormented the 52-year-old. Finally, eye problems and numbness in the left arm and hands came along.
<blockquote>
&ldquo;I could pinch my forearm all I wanted, I felt nothing at all. Even my fingertips were numb.&rdquo;
</blockquote>
Various medical evaluations followed. The neurological symptoms became more and more stressful. &ldquo;After two to three hours of looking at a screen, my eyes hurt and the dizziness became more and more intense, so I couldn&rsquo;t continue working,&rdquo; explains Esther Ebn&ouml;ther. Brain fog and difficulty finding words also made a normal workload impossible.
<blockquote>
&ldquo;When I&rsquo;m tired, &lsquo;bookshelves&rsquo; suddenly become &lsquo;shelvesbook&rsquo;.&rdquo;
</blockquote>
&ldquo;In my immediate circle, there was a great deal of understanding for my condition,&rdquo; says Esther Ebn&ouml;ther. Nevertheless, some remarks from people with little knowledge of Long COVID hurt. &ldquo;It makes me think,&rdquo; says Ebn&ouml;ther, &ldquo;when someone says they also get tired sometimes, that it&rsquo;s certainly because of your age or in the worst case, attribute it to burnout or blame the 5G network for my symptoms.&rdquo;
<img src="https://adm.altea-network.com/assets/8e39df66-b517-4ed0-9fff-0a53ff6fa172?width=1536&amp;height=2048" alt="Relaxation: Esther Ebn&ouml;ther with her partner Hans Nauer at Lake Constance. (Picture: private)" />
Today, Esther Ebn&ouml;ther&rsquo;s biggest concern is that the neurological impairments could last even longer and that she could lose cognitive resilience. She fears that she will no longer be able to do her job as head of school administration, and her greatest hobby, the accordion, has also been affected.&nbsp;
&ldquo;Today, I have to concentrate much harder to make my fingers do what I want,&rdquo; explains Esther Ebn&ouml;ther. &ldquo;I can manage dances that I&rsquo;ve been playing for 30 years quite well. But I need a lot of patience to learn new pieces of music. The interplay between head and finger requires much more concentration.&rdquo;
<blockquote>
&ldquo;There is a glimmer of hope. Progress is made in small steps.&rdquo;
</blockquote>
Esther Ebn&ouml;ther&rsquo;s stay at the clinic was not only good because of the therapies. &ldquo;It was very rewarding to talk to other people affected as well.&rdquo; She is now able to accept the sobering realization that healing takes a very long time. &ldquo;Now I can communicate my situation better, both at work and in my social circle.&rdquo;&nbsp;
Hope from health insurance&nbsp;
As good as the stay in the clinic was, it has put a heavy strain on Esther Ebn&ouml;ther&rsquo;s household budget. She has therefore submitted a reconsideration request to her health insurer and is now hoping for a positive decision.

“My accordion shows me my limits, but it also gives me strength.”

For business consultant Daniel Steiner, 50-hour weeks were a matter of course. But after he contracted COVID-19, he had to take full-time sick leave.

​​The long-term consequences of COVID-19 are manifold, and sometimes so severe that people have to take sick leave – which is exactly what happened to Daniel Steiner. In Altea Stories, he tells his Long COVID story.​

​​​Sick leave due to the long-term consequences of coronavirus | Altea​​

At the outbreak of the COVID-19 pandemic, 38-year-old Daniel Steiner was an active and athletic man. He had great discipline, and three times per week, he either completed 12 laps of the swimming pool or walked up and back down his local mountain, the &Uuml;etliberg, at a brisk pace. His greatest passion was long flights on his paraglider. &ldquo;I had practically never been sick,&rdquo; says Daniel &ndash; whose name has been changed for anonymity.&nbsp;
Craftsmen carried the virus&nbsp;
Switzerland had recovered from the first lockdown when Daniel Steiner commissioned work in-house. As we can all surely remember, protective masks were not yet being recommended by the authorities at that time, and so unsurprisingly neither the craftsmen nor Daniel wore masks. &ldquo;One of the workers was coughing a lot, but I kept a distance of two meters and I thought that was enough.&rdquo; Unfortunately, it was precisely at that time that a cold spell had rolled in, and most of the windows were kept closed. The outcome? Daniel Steiner presumably contracted the coronavirus and fell ill with COVID-19.
<blockquote>
&ldquo;I used to walk up the &Uuml;etliberg easily. Now my heart rate gets up to 120 when I walk to the fridge.&rdquo;
</blockquote>
His first symptoms appeared after a week. &ldquo;At the time, I didn&rsquo;t know much about COVID-19,&rdquo; says Daniel. &ldquo;I went to bed and tried to cure what I thought was the flu.&rdquo; Daniel was first tested three weeks after his infection. The result was negative.<span data-ccp-props="{&quot;201341983&quot;:0,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559731&quot;:0,&quot;335559739&quot;:120,&quot;335559740&quot;:300,&quot;469777462&quot;:[980],&quot;469777927&quot;:[0],&quot;469777928&quot;:[1]}">&nbsp;
&ldquo;You&rsquo;re just a bit out of shape&rdquo;<span data-ccp-props="{&quot;201341983&quot;:0,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559731&quot;:0,&quot;335559739&quot;:120,&quot;335559740&quot;:300,&quot;469777462&quot;:[980],&quot;469777927&quot;:[0],&quot;469777928&quot;:[1]}">&nbsp;
For a short while, it seemed as if Daniel was recovering. But things took a sudden turn for the worse: the business consultant suffered an unexpected drop in performance. Within a very short time, his resting heart rate rose to 130 and his oxygen levels dropped dangerously. The family doctor sent Daniel to the emergency room, where he was sent home after a few hours. &ldquo;You&rsquo;re just a bit out of shape,&rdquo; the hospital staff remarked.
<img src="https://adm.altea-network.com/assets/b7096c2a-a353-4693-85d4-5d263f2b832c?width=1536&amp;height=1536" alt="Free as a bird: paragliding was Daniel Steiner&rsquo;s greatest passion. (Image: private)" />
This is how Daniel Steiner&rsquo;s tale of woe with Long COVID began. Most of his problems began with his heart. Daniel was able to recognize this early on thanks to his fitness tracker, which he wore constantly before he became ill. &ldquo;Now my heart rate gets up to 120 when I walk to the fridge,&rdquo; he says.&nbsp;
Doctors knew little&nbsp;
Daniel is disappointed by some of the doctors he turned to during his ordeal. They had little knowledge of Long COVID, showed little understanding and even doubted that the syndrome existed at all. All this happened while Daniel was on full-time sick leave, sitting at home suffering with extreme tiredness, heart palpitations, severe coughing and symptoms of memory loss. One doctor said it was probably just depression.
<blockquote>
&ldquo;It probably would have been better to not start exercising again so soon. But nobody warned me back then.&rdquo;
</blockquote>
Getting his estate in order&nbsp;
&ldquo;When your symptoms aren&rsquo;t improving and no one is able to help you, you do start to worry,&rdquo; says Daniel. He followed a journalist from the Guardian on social media, who was affected by Long COVID and would write about his experiences. &ldquo;His death frightened me terribly.&rdquo; Daniel began to get his own estate in order.&nbsp;
But the turnaround came for Daniel when an innovative general practitioner prescribed him an anti-inflammatory medicine. After that, he quickly recovered. He was able to get better control of his symptoms and started to educate himself. Although he is not a doctor, Daniel read studies and reports about Long COVID and learned a lot about the syndrome.&nbsp;
Today, Daniel is doing quite well again &ndash; he is not cured, but thanks to the medication he can manage his symptoms and is able to work again. Now he is hoping for a rapid vaccination, from which he has high expectations.

The long-term effects of COVID-19: when the business consultant needs advice

At first, it was not being able to taste tomato sauce. Now, forgetfulness is what Sandra Bigai struggles with when cooking – and during other activities.

​​Sandra Bigai became infected with Covid during the first wave. To this day, she continues to suffer from the long-term effects. She has shared her story with Altea.​

​​No energy after Covid | An affected person reports | Altea​

In spring 2020, just one day after the Federal Council declared the &ldquo;extraordinary situation&rdquo;, Sandra Bigai experienced a dry cough and an unusual type of nausea. The communications specialist in the health sector didn&rsquo;t think about COVID-19; she just wondered if she had caught a cold somewhere or been overworked in the foundation&rsquo;s busy crisis management team.&nbsp;
Numb nose while cooking&nbsp;
When, while cooking, she heard a nurse on the radio describe <a href="https://altea-network.com/en/vademecum/taste-and-smell" target="_self">loss of smell</a> as a typical symptom of the then-mysterious new disease, Sandra Bigai suddenly realized she couldn&rsquo;t smell the tomato sauce in the pan in front of her. So, she did a test, and the result was positive. When the call came from the cantonal hospital, Sandra Bigai became painfully aware that no treatment was available. She only had Dafalgan to fight fever.
<img src="https://adm.altea-network.com/assets/a8c64257-b3bc-4640-97c7-232d94f1f8cb?width=2016&amp;height=1512" alt="Sandra Bigai first became aware that she couldn&rsquo;t smell anything while cooking. (Image: private)" />
&ldquo;At night, it suddenly felt like my ribcage was being compressed in a kneading machine,&rdquo; recalls Sandra Bigai. Subsequently, she was bothered more and more by nausea and painful joints. Her quarantine was over after 10 days, but her symptoms continued.
<blockquote>
&ldquo;I feel like I&rsquo;m constantly having to tap my reserves and my battery is no longer charging.&rdquo;
</blockquote>
When, a few weeks later, she became unable to walk due to osteoarthritis pain in her knee, she went to see a rheumatologist. This rheumatologist found no connection between the COVID-19 disease and the <a class="Hyperlink SCXW201923027 BCX0" href="https://altea-network.com/en/vademecum/pain" target="_blank" rel="noreferrer noopener">rheumatic pain</a> in her knee and upper body. However, treatment of her joint and muscle pain with high doses of cortisone and a range of painkillers did not produce the desired results.
<img src="https://adm.altea-network.com/assets/cdd2f70a-d399-4e1a-bf9c-e09af96c872b?width=1512&amp;height=2016" alt="When possible, walks in nature provide a glimmer of light in Sandra's daily life. (Image: private)" />
Even more than a year after infection, her symptoms sometimes push her to the brink of despair. Undergoing more health assessments is exhausting. She also has to contend with the issue of insurance, even though her employer has classified her illness as an occupational accident, and she continues to suffer from wandering pain. She is also struggling with <a href="https://altea-network.com/en/vademecum/thinking-and-perception" target="_self">concentration, memory lapses</a> and <a href="https://altea-network.com/en/vademecum/fatigue" target="_self">exhaustion</a>.&nbsp;
&ldquo;When cooking, I keep forgetting my usual routines and wondering what to do next, even though I know the recipes by heart,&rdquo; says Sandra Bigai. Her sense of smell returned after three months, but her other symptoms have become more pronounced.
<blockquote>
&ldquo;I tell the doctors the same story over and over again. I still haven&rsquo;t received any answers to my questions.&rdquo;
</blockquote>
Sandra Bigai often doesn&rsquo;t recognize herself anymore. &ldquo;I&rsquo;m more anxious, often forgetful, and my tank is always empty,&rdquo; she explains. &ldquo;I feel like I have to constantly tap my reserves and my battery is no longer able to recharge.&rdquo; For her, the most difficult thing is accepting her present state. &ldquo;It&rsquo;s hard for me to forget what my life was like before and how I effectively became a different person overnight.&rdquo;&nbsp;
At last, someone who really listens&nbsp;
Sandra Bigai has been hoping to find answers from sources other than conventional medicine, so she turned to a naturopath. Even though she does not fully endorse all <a href="https://altea-network.com/en/blog/39-schul-vs-komplementaermedizin" target="_self">alternative approaches</a>, for the first time, Sandra Bigai felt that someone had taken the time to listen, viewed her body as a whole and taken this perspective into account when deciding on her treatment. For Sandra, mutual trust is very important. &ldquo;Otherwise, it&rsquo;s better to change doctors.&rdquo;&nbsp;

Becoming a different person overnight after catching Covid

Erik Kötter was a classic high performer: a doctor, a dedicated father of four and athletic. Since he began suffering from Long COVID, even making a cheese sandwich has become a huge hurdle.

​​​Erik Kötter was a classic high performer: a doctor, a dedicated father of four and athletic. Things have changed since he became infected with Covid. In Altea Stories, he talks about the extreme exhaustion he is suffering from as a result of Long COVID.​​

​​​​Extreme exhaustion caused by Long COVID | Altea​​​

Sometimes banal everyday tasks are the most revealing. &ldquo;Last week, I wanted to make myself a sandwich,&rdquo; Erik K&ouml;tter explains over the phone. So, you cut the cheese, cut the bread, spread on mustard and mayo, wash a little salad and you&rsquo;re done. &ldquo;I only got to halfway &ndash; then I needed a break,&rdquo; recalls K&ouml;tter. &ldquo;It&rsquo;s a feeling I&rsquo;ve never felt before.&rdquo;
<blockquote>
&ldquo;Despite my experience and medical training, I didn&rsquo;t really understand the immense suffering involved.&rdquo;
</blockquote>
There are, of course, terms for this <a href="https://altea-network.com/en/vademecum/fatigue" target="_self">all-encompassing exhaustion</a> that takes hold of Long COVID patients. Erik K&ouml;tter knows them very well. He studied them in his role as a physician, and as a family doctor, he even cared for patients with Long COVID. &ldquo;I supported them as much as I could,&rdquo; says K&ouml;tter. &ldquo;However, despite my training, I didn&rsquo;t really understand the immense suffering involved,&rdquo; says the doctor, whose story is being published here under a pseudonym.&nbsp;
Indescribable lack of ability&nbsp;
According to Erik, it is a completely new feeling, which is inadequately described by the word &ldquo;fatigue&rdquo;. &ldquo;I had to fight to be able to say anything at all, to be able to raise my arms, to hold my phone.&rdquo; In his view, if you haven&rsquo;t experienced it yourself, it&rsquo;s hard to imagine.
<img src="https://adm.altea-network.com/assets/66daa18b-ef00-4814-8792-b963a1b8e959?width=3500&amp;height=2333" alt="Nature and exercise: Before his illness, Erik K&ouml;tter enjoyed bicycling. (Symbol image: Adobe stock photo)" />
Erik K&ouml;tter cannot be accused of being particularly sensitive or self-pitying. That may have been the problem. After catching COVID-19, K&ouml;tter called in sick for a few days and worked from home while he was isolating. After three weeks, he went fully back to work.&nbsp;
Did he step back on the gas too soon?&nbsp;
&ldquo;I wasn&rsquo;t fully fit yet,&rdquo; recalls K&ouml;tter. After a short sprint on his bike, he momentarily felt exhausted throughout his body and experienced dull pain in his muscles. However, it went away again. After each long day at work, he felt like a sack of potatoes. But the next morning, he felt OK again. &ldquo;I just kept going. Sometimes you just have to push through,&rdquo; says K&ouml;tter.&nbsp;
He ignored his body&rsquo;s signals &ndash; and then came the <a href="https://altea-network.com/en/vademecum/fatigue" target="_self">crash</a>. Since then, everything has changed. Even two months later, he still spends 95% of his time lying down, says the 38-year-old. &ldquo;Now I can get up and clear away my dishes,&rdquo; he says happily. &ldquo;But I still have to take a break in between and afterwards.&rdquo;
<blockquote>
He ignored his body&rsquo;s signals &ndash; and then came the crash.
</blockquote>
What he finds particularly difficult is relying on help instead of being the one helping others. &ldquo;My wife deserves a trophy. But I feel very guilty when I see how stressed she is,&rdquo; says Erik K&ouml;tter. Before his illness, he helped out as best he could around the house and with the care of his four children, but now she has to take care of everything herself.&nbsp;
There for the children &ndash; as they are there for him&nbsp;
On good days, K&ouml;tter still sees some glimmers of light. He enjoys reading more with the children, helping out with homework and playing games. &ldquo;It also helps me mentally. Without my family, I probably would have sunk into depression.&rdquo; When Erik K&ouml;tter feels like it, he also reads crime novels that had remained unread for years, catapulting himself into another world where Covid is not an issue.
<blockquote>
&ldquo;You are not alone. It&rsquo;s not just in your head &ndash; it&rsquo;s a real disease.&rdquo;
</blockquote>
Alternatives for the doctor&nbsp;
He is also trying out alternative treatments, &ldquo;even though I&rsquo;m a house doctor. Fellow doctors have also advised me to try them out.&rdquo; Acupuncture is one example. Does it help? For Erik, there are still some question marks. He just wanted to try it out: &ldquo;But this is another area where I have to make sure I don&rsquo;t do too much.&rdquo;&nbsp;
&ldquo;You are not alone&rdquo;&nbsp;
Erik K&ouml;tter has responded positively to breathing exercises from audio books (available on <a href="https://open.spotify.com/album/3HlC7qhHfcdBvyLw3XYUzb?si=FL13Gx1KQp6qR8OqgRHv6w">Spotify</a>, <a href="https://www.audible.de/pd/Meditation-Atmung-Beruhigung-des-Nervensystems-und-Foerderung-der-Homoeostase-Hoerbuch/B08HSFZVSH">Audible</a> or <a href="https://www.exlibris.ch/de/musik/musik-download-mp3/pierre-bohn-torsten-abrolat-syncsouls/meditation-atmung-beruhigung-des-nervensystems-und-foerderung-der-homoeostase/id/dlmr13122304">exlibris</a>, for example). Are there any other tips that the family doctor would like to share with other people who are suffering? &ldquo;I want other affected people to feel that they are not alone. It&rsquo;s not just in your head. It&rsquo;s a real disease.&rdquo;&nbsp;
Picture source: <a href="https://stock.adobe.com/ch_de/">Adobe stock photo</a>

The long-term consequences of Covid: when the physician becomes the patient

Traveling two miles by car is too far for him – and he often forgets whether he’s brushed his teeth yet. Ramon Crosina’s story about living with Long COVID.

​​​​Acupuncture and Chinese herbs provided Ramon Crosina with initial relief from the symptoms of Long COVID. He spoke with Altea about the ups and downs since he first caught COVID.​​​

​​​20-year-old suffering from Long COVID | Testimonial | Altea​​

Until last winter, 20-year-old Ramon Crosina&rsquo;s life was, to coin a phrase, on track: his training as a car mechatronics technician enabled him to perfectly combine his passion for cars with his career, and he spent his free time hanging out with friends.&nbsp;
A rollercoaster of symptoms&nbsp;
Ramon&rsquo;s positive PCR test changed his life abruptly: he fell ill with COVID-19. At first, he only had mild complaints. &ldquo;With me, the COVID symptoms started off by going up and down. If I ever had a fever, it might disappear after an hour and be replaced by a headache and a cough,&rdquo; says Ramon. Over the course of eight days, different symptoms sometimes alternated hourly.
<blockquote>
&ldquo;My family and friends stand by me and support me as much as they can.&rdquo;
</blockquote>
After recovering, Ramon felt well for four days. Then the first signs of the long-term consequences of COVID-19 began to appear. Ramon recalls: &ldquo;Initially, I still worked 50% at the company, but until midday at the latest &ndash; I had to go home to lie down and sleep.&rdquo; Signs of Long COVID soon appeared: unusually severe exhaustion, shortness of breath, brain fog and extreme muscle pain.&nbsp;
During his military service just a few weeks earlier, Ramon Crosina achieved the sports badge &ndash; easily. Now, a 500-meter walk brought him to the limit. It&rsquo;s no wonder Ramon developed mild depression and started to have panic attacks in the meantime. The number of symptoms Ramon was suffering from steadily grew: sore throat, headaches, muscle twitching, fluctuating blood pressure, sleeping problems.
<img src="https://adm.altea-network.com/assets/f9fc8c48-41d7-4573-82ea-8e7fbcc644a7?width=2976&amp;height=3968" alt="A sporty guy: before becoming ill, Ramon Crosina loved doing lots of exercise. (Picture: private)" />
&ldquo;Some of the people around me had difficulty understanding me and accepting what I was going through. But my family and friends stand by me and support me as much as they can,&rdquo; says Ramon. He is particularly grateful to be able to live at home with his parents, because this means shopping and carrying bags are not something he has to worry about at the moment.&nbsp;
Specialist clinic in Chur&nbsp;
Ramon&rsquo;s family doctor was also very understanding, but soon reached the limits of his options. The physician referred him to Gregory Fretz&rsquo;s Long COVID clinic at the Chur cantonal hospital, where Ramon underwent numerous tests and examinations &ndash; with the result that he was &ldquo;healthy according to conventional medicine.&rdquo; This meant that causes unrelated to COVID were ruled out. Dr. Fretz then did all he could to help Ramon Crosina and managed to have him admitted to the Clinica Curativa in Scuol for a course of treatment.
<blockquote>
&ldquo;I take comfort in knowing that I&rsquo;ll get better, even if there is a long way to go.&rdquo;
</blockquote>
&ldquo;Did I brush my teeth yet?&rdquo;&nbsp;
After all, it was clear that Ramon was sick. Recently, he was diagnosed with a severe memory impairment. &ldquo;Sometimes I can&rsquo;t remember the simplest things &ndash; whether I&rsquo;ve brushed my teeth, for example,&rdquo; says Ramon.&nbsp;
Starting a U-turn&nbsp;
Acupuncture and Chinese herbs provided initial relief from symptoms. Ramon is not cured, &ldquo;but I finally feel like I&rsquo;m back on the up,&rdquo; he says. And he is looking forward to the stay in Scuol, from which he also expects a lot.

Long COVID has left this motorhead running on fumes

Long COVID turned Yvonne Faller’s life upside down. Her doctors seemed to be at a loss at first. Now, she hopes specialist clinics will be able to help.

​​Long COVID has turned Yvonne Faller's life upside down. She is now hoping for relief through a specialist consultation for chronic fatigue. With Altea she shared her whole story.​

​​​​Hypersensitivity as a long-term effect of Covid | Altea​​

A half-hour walk to work, half an hour on the way back, and in between a full day spent caring for two toddlers &ndash; this is what Yvonne Faller&rsquo;s daily life looked like until the end of last year. The infant educator was in the prime of her life and bursting with energy and creativity.&nbsp;
Fatigued? No, infected&nbsp;
But then, just before the turn of the year, she contracted COVID-19 despite all the precautions she had taken. While playing, she suddenly noticed that she had memory problems and began to suffer from headaches. Initially, she thought she was fatigued from the holiday season. When her cough started in early January, she took a test, and the result was positive.
<blockquote>
&ldquo;I&rsquo;m an extremely creative person with endless ideas. But it's like that side of me is turned off at the moment.&rdquo;
</blockquote>
New symptoms appeared: increased temperature, chills, loss of taste and smell, headaches with increasing severity and heart palpitations that keep her awake at night. Yvonne Faller called her family doctor for advice. &ldquo;She was overwhelmed by the situation,&rdquo; Yvonne recalls and adds &ldquo;she said there wasn&rsquo;t much she could do, and that if I couldn&rsquo;t take it anymore, I would have to go to the hospital.&rdquo;&nbsp;
Paralysis in one side of the face&nbsp;
A few weeks later, Yvonne Faller suddenly became unable to get up. She thought it must be a stroke because one side of her face was paralyzed. Neurological tests revealed inflammation of the pituitary gland caused by <a href="https://altea-network.com/en/vademecum/skin-and-hair" target="_self">herpes zoster</a>. The herpes virus had activated in her body, which was weakened by Covid, causing shingles and nerve pain. These conditions were treated with antiviral and antiepileptic drugs to prevent chronification.
<img src="https://adm.altea-network.com/assets/e1bcca08-af5c-434f-a226-6bdcc6ef19f9?width=1600&amp;height=1064" alt="A creative streak: Yvonne Faller likes to get her creative juices flowing, but she is unable to do so at the moment. (Picture: private)" />
Overstimulation of the brain caused Yvonne to suddenly become hypersensitive to smells, sounds and light. Even minor triggers can throw her off balance. Meanwhile, she can no longer exercise her artistic flair, and reading a book is impossible. She feels like her energy reserves are at 30% in the morning. Showers and breakfasts use up half of that, and her battery runs out by lunchtime.&nbsp;
An exercise in composure&nbsp;
<a href="https://altea-network.com/en/vademecum/mental-health" target="_self">Yoga</a> and <a href="https://altea-network.com/en/vademecum/breathing" target="_self">breathing</a> therapies help her. When her heart is racing, her body trembling or her legs give way, she tries to calm herself down using gentle stretches. &ldquo;I try to accept the situation as calmly as possible or view trembling as something good or therapeutic, for example. That helps me,&rdquo; explains Yvonne. She then adds: &ldquo;You have to lower your expectations, celebrate small successes and <a href="https://altea-network.com/en/vademecum/fatigue" target="_self">focus on what you can do</a>.&rdquo;
<blockquote>
&ldquo;I want to get well, get back on my feet and be able to have a normal day.&rdquo;
</blockquote>
Faller is not only affected by her symptoms, but also by the way people have responded to her illness. Her employer has dismissed her, and her family doctor says she can&rsquo;t continue to put her on sick leave. But working as a nanny is inconceivable at the moment; Faller doesn&rsquo;t have nearly enough energy for a 12-hour day. The doctor suggested that a psychologist sign her off work. &ldquo;But that&rsquo;s out of the question for me. My condition is not psychological!&rdquo; she emphasizes.&nbsp;
Neurology as a source of hope&nbsp;
Yvonne Faller feels well cared for by her neurologist, and she has an appointment with a chronic fatigue specialist soon. She hopes to finally feel that she is being taken seriously and to get answers to her questions. But she&rsquo;s already worried about how she will get to Chur in the first place. &ldquo;Longer journeys are a huge challenge,&rdquo; says Faller. &ldquo;However, I want to get well, get back on my feet and be able to have a normal day.&rdquo;

Suddenly hypersensitive to smells, sounds and light

Edith Schwitter is an experienced nurse. But after being infected with COVID-19, she became dependent on hospital care herself – and barely survived.

​​After a COVID-19 infection, nurse Edith Schwitter relied on hospital care – and barely survived. In Altea Stories, she tells her personal story of the infection and long-term consequences.​

​​Post COVID: Immune system no longer functions properly | Altea​

When Edith Schwitter, 52, developed a fever in December 2020 and suffered from muscle and headaches following a flu vaccination, the experienced nurse first thought she was having a reaction to the vaccination and continued her work.&nbsp;
Her first two COVID tests were negative, so she wanted to fill in for a shift over the weekend because nursing staff were scarce. After a third test, this time positive, severe head, muscle and limb pain emerged, which had to be treated with painkillers. Edith Schwitter was exhausted and had difficulty breathing and concentrating.
<blockquote>
&ldquo;In retrospect, I should have insisted and gone straight to the hospital when I was feeling ill.&rdquo;
</blockquote>
&ldquo;You feel helpless when your doctor tells you he doesn&rsquo;t want to see you and you should stay at home as long as it&rsquo;s not too bad,&rdquo; recalls Edith Schwitter. &ldquo;In retrospect, I should have insisted and gone straight to the hospital when I was feeling ill.&rdquo;&nbsp;
Inflammation spreads&nbsp;
Although Edith Schwitter&rsquo;s symptoms were initially not as bad as her partner&rsquo;s, the inflammation spread unhindered in her body. She was first diagnosed with pneumonia on both sides. This was followed by sinusitis (inflammation of the frontal and maxillary sinus). The inhalation of asthma agents then led to a fungal infection in the throat and mouth area (thrush). This was followed by an inflammation of the oral mucosa in the entire throat area.
<img src="https://adm.altea-network.com/assets/6b03643f-8831-412f-ba3f-b5a130876ab2?width=1536&amp;height=2048" alt="Happy to be active: Before her infection, Edith Schwitter was always on the go and enjoyed the outdoors. (Image: private)" />
Sudden pain in her left flank and a fever of 40 degrees forced Edith Schwitter to go to the hospital. A severe infection in the bladder and renal pelvis was treated with antibiotics. However, the infection did not respond to the treatment, and as the inflammatory levels continued to rise and she lost a lot of blood, the doctors became anxious on the third day. Edith Schwitter had blood poisoning.&nbsp;
Great luck&nbsp;
&ldquo;It wasn&rsquo;t until I was in hospital that I realized how lucky I was. I barely made it after the severe blood poisoning with the bacterium E. coli infected my entire system,&rdquo; says the nurse. Fortunately, the bacteria could be combated with a stronger antibiotic. After two weeks, Edith Schwitter was released from hospital.
<blockquote>
&ldquo;My immune system has gone haywire. Something&rsquo;s stuck everywhere. If one thing gets better, then something new follows.&rdquo;
</blockquote>
During a Long COVID consultation, she was told that her immune system is no longer functioning properly. She was on sick leave until the end of May for chronic exhaustion (fatigue). She does not yet know whether she will be able to return to work at that time. Edith Schwitter advises those affected to attend a Long COVID consultation as soon as possible. &ldquo;All the previous discussions and explanations took a lot of energy and didn&rsquo;t help me any further.&rdquo; Even if certain readings are unremarkable, this does not necessarily mean that those affected are actually healthy.&nbsp;
Especially important: pacing&nbsp;
During her consultation, the doctor who specializes in chronic fatigue listened to her correctly &ndash; and he brought Edith Schwitter back to reality. He told her that Long COVID sufferers won&rsquo;t recover in a few weeks. During the months that followed, she realized that any excessive strain only made everything worse. Pacing was the order of the day, i.e. managing energy reserves and not overloading yourself.
<blockquote>
&ldquo;I know that those affected aren&rsquo;t making things up and there&rsquo;s nothing to be ashamed of.&rdquo;
</blockquote>
&ldquo;My immune system has gone haywire. Something&rsquo;s stuck everywhere. If one thing gets better, then something new follows. The muscle pain is so severe that you can&rsquo;t avoid it,&rdquo; says Edith Schwitter. &ldquo;As a specialist, it&rsquo;s doubly bad to notice that even months later you&rsquo;re still so sick that you have to stay at home. I know that those affected aren&rsquo;t making things up and there&rsquo;s nothing to be ashamed of.&rdquo;

Long COVID sufferers: “There’s nothing to be ashamed of.”

Mattia is 11 years old and suffers from Long COVID. His mother tells us how he keeps learning and smiling despite all of this.

​​Children with Long COVID | Affected people tell their story | Altea​

It was mid October last year, as Angelina Brupbacher's son was infected by COVID-19. "The worst was initially the nausea", tells  Brupbacher on the phone. "For two months our son ran around with a bucket for his vomit."&nbsp;
Constant ups and downs&nbsp;
Things are now better in this regard, but what remains is a Fatigue syndrome: Mattie gets tired very quickly and has trouble concentrating. The condition remains unpredictable. "Yesterday it was a great day, the day before was really bad, and today it is going so-so", says Brupbacher. In reality her name is different*. The topic of Long COVID in children is important to her, but she does not want to expose her son unnecessarily.
What scares the mother is the thought that this state of exhaustion could become chronic. Therefore, she makes sure that her son does not overexert himself. He goes to school for one math class a day. Angelina Brupbacher takes care of the rest with distance teaching from home. "Children today are already performance-oriented", she says. "An 11-year-old does not know his limits so well. So I have to make sure that we stop before he reaches the limit of exhaustion."&nbsp;
Experience with chronic Fatigue&nbsp;
Angelina Brupbacher knows from her own experience how important is to dose the effort. She herself suffers from Chronic Fatigue Syndrome (CFS). She was diagnosed with CFS shortly before the outbreak of the pandemic. She had a career, her husband was more engaged in the household. Now they switched roles. With repeated overexertion, the fatigue may become chronic. In this respect, it is fortunate that Brupbacher is already familiar with this condition. Finding the right balance between breaking and encouraging can however be a challenge. "He is intelligent and he has the will, but then he lacks the energy". It is sometimes hard to observe.
<blockquote>
"The doctor told him: 'You absolutely have to see your friends again!' It makes him much better mentally."
</blockquote>
The Brupbacher family has had good experiences with the family doctor and the school. "The family doctor always took us seriously and listened to us. Whenever I talked about a new study that I had read about, she would take it up and investigate accordingly."&nbsp;&nbsp;
It was very important that the doctor told her son: "You absolutely have to see your friends again!" Because in the first month he didn't dare to do it - after all, he didn't go to school either. In isolation, the son developed depressive symptoms. Now he is better again thanks to contacts with his peers.
<blockquote>
"I keep telling myself: 'He'll get well!' You have to learn to be an optimist."
</blockquote>
The school was also accommodating and agreed to an individual solution. "They knew me at school and my son was hardworking. That sure helped. But how would the school have reacted had he been a different child earlier?" asks Brupbacher. She is addressing an important issue: The institutional recognition of Long COVID. "That will be one of the big issues for the future",  Brupbacher is convinced.
The most important thing for Angelina Brupbacher is to stay positive! "We try to laugh a lot together. "I keep telling myself: 'He'll get well!' You have to learn to be an optimist. That is good for the child and the whole family."&nbsp;&nbsp;
Second infection&nbsp;&nbsp;
Even if there are setbacks on the way. Mattia was unlucky enough to get infected again in March - this time with the British variant. Despite everything, the family is also doing plans for the future: "I'm looking forward to healthier times - and we dream of family vacations."

Long COVID and children: "We try to laugh a lot with our son."

Physical therapist Simona Kopp was severely hampered by Long COVID for months. A turning point came when she started breathing training. Her sense of smell remains, however, altered.

​​​Physical therapist Simona Kopp was severely hampered by Long COVID for months. A turning point came when she started breathing training. Her sense of smell, however, remains altered.​​

​​​Long COVID: using the ”SpiroTiger” trainer can help​​

Simona Kopp is an athletic person: the 30-year-old logs almost 4,500 kilometers on her bike every year. When she fell ill with Covid in March 2020, her symptoms were relatively mild. &ldquo;I never really felt that bad,&rdquo; says Kopp. She was also not concerned that two weeks later she was still weak and found it unusually difficult to take a walk or make her way up a few flights of stairs. After all, as a physical therapist Simona Kopp understands that after growing weak due to an infection or accident, physical fitness has to be rebuilt little by little.
<blockquote>
&ldquo;I found myself wondering more and more, what&rsquo;s going on with my lungs.&rdquo;
</blockquote>
Things didn&rsquo;t seem to get any better. Twenty minutes of jogging were enough to make Simona Kopp feel for several hours that she could not get enough air into her lungs. &ldquo;The doctors just told me that I had to be patient, but when, after three months, I still saw no improvement, I found myself wondering more and more: &lsquo;What&rsquo;s going on with my lungs?&rsquo;&rdquo;, says Kopp. Even her partner noticed that during their bike tours together, her performance was noticeably impaired.&nbsp;
Decision to take a stress test&nbsp;
Simona Kopp decided to undergo stress testing known as a cardiopulmonary exercise test (CPET or Spiroergometry) (find out more <a href="https://altea-network.com/en/blog/27-kurzatmigkeit/" target="_self">in this blog post</a>). A decision like this should be made with a specialist in the case of someone suffering from Long COVID: in some patients, overexertion can lead to a crash (<a href="https://altea-network.com/en/vademecum/fatigue/" target="_self">Post Exertional Malaise or PEM)</a>which can set them back for days. This is especially true if they are already familiar with this type of exertion intolerance from everyday life.&nbsp;
Yet, this was not the case for Simona Kopp: her shortness of breath would dissipate 2 or 3 hours after exertion, without wiping her out for days afterwards. She could still manage her full 90% workload. If there is no indication of PEM, then a stress test can be useful and provides meaningful diagnostic data (see <a href="https://altea-network.com/en/blog/55-spiroergomethrie/" target="_self">the related blog post)</a>.
<blockquote>
&ldquo;I was happy to hear that as far as they could tell, everything was normal and that I could exercise.&rdquo;
</blockquote>
Simona Kopp thus underwent a cardiopulmonary exercise testing (CPET): under a predefined stress protocol, she had to steadily increase her level of exertion to the maximum on a cycle ergometer. Her lactate levels showed that her muscles were running out of oxygen far too quickly. &ldquo;I had to stop the test much earlier than I would have expected, based on my experience,&rdquo; says Simona Kopp. She was not alarmed that she felt shortness of breath for a few hours afterward. &ldquo;At this point, I knew it was just temporary.&rdquo;&nbsp;
Healthy organs&nbsp;
Kopp was able to discuss her results with a doctor. Her heart and lungs showed no abnormalities. &ldquo;His opinion was that I could carry on training. I was happy to hear that I wasn&rsquo;t putting myself at risk.&rdquo; The exercise test was therefore a way to benchmark her health, which gave her a feeling of security. Simona Kopp began with light interval training. To make significant progress, however, she needed a different method.
<img src="https://adm.altea-network.com/assets/48314360-1d7c-4806-aa63-bb6fc0487567?width=3024&amp;height=4032" alt="Lung training: Simona Kopp performed weekly exercises using a respiratory muscle trainer called &rdquo;SpiroTiger&rdquo;. (Image: private)" />
Because she worked in the physiotherapy department of the Balgrist University Hospital, Simona Kopp knew that training devices for respiratory muscles existed. She would train multiple times per week with increased resistance. Sometimes she followed her breathing training with interval training on a bike (with short high-intensity intervals).&nbsp;
&ldquo;I was happy I&rsquo;d found a training method that allowed me to make progress. Just waiting and hoping it will eventually get better is really hard,&rdquo; says Kopp.&nbsp;
It was a success: three months later she felt relatively fit again. She had another cardiopulmonary exercise test, and there was a marked improvement in her results. She was even able to participate in the Nationalpark Bike Marathon and was happy with her performance: &ldquo;My lungs had regained 90% of their capacity.&rdquo;
<img src="https://adm.altea-network.com/assets/f7af9506-61c1-4b53-bf98-7183ed3f7cf7?width=1283&amp;height=1920" alt="Ultimate goal achieved: Simona Kopp could bike again. (Image: provided)" />
After around eight months, Simona Kopp felt like she was in shape again. So, was it all back to normal? Not really: almost two years after infection, her sense of smell still hasn&rsquo;t really gone back to normal. &ldquo;I&rsquo;m at around 80% now,&rdquo; Kopp estimates. At first, she had no sense of smell at all. It then quickly improved, followed by no more progress. Now, some smells return suddenly &ndash; like freshly mowed grass.&nbsp;
Not like before&nbsp;
Other smells have changed. &ldquo;A banana doesn&rsquo;t taste like it used to. Instead, it tastes like something new, something I can&rsquo;t describe exactly.&rdquo; Kopp had to change her shower gel and body lotion, as their scents made her nauseous. Raw onions are out of the question, and she now only eats dark chocolate &ndash; everything else is much too sweet. &ldquo;Now my partner tastes things when we&rsquo;re cooking,&rdquo; she says.&nbsp;
Even though she feels healthy again, the long-term effects of her Covid infection are still with her. &ldquo;No one can tell me if <a href="https://altea-network.com/en/vademecum/taste-and-smell/" target="_self">my sense of smell or taste</a> will ever come back completely. So, I accept these changes, for the moment.&rdquo;&nbsp;

Stories

Long COVID: A never-ending search for understanding and support

You need to look for things that bring you joy

Fighting Long COVID and Multiple Sclerosis with Faith and Gratitude

When Long COVID forces a doctor, father and husband to take a break

With unwavering optimism through Long COVID

“From a sore point to a turning point” – pain management through poetry

Long COVID marathon – back to Ironman level after a year of illness

On balls of happiness and chickpeas, or the importance of self-reflection

“The pictures give me strength to deal with Long COVID.”

“My life with Mr. Long”: diary of a patient – part 5

“My life with Mr. Long”: diary of a patient – part 4

“My life with Mr. Long”: diary of a patient – part 3

"My life with Mr. Long": Diary of a patient – part 2

"My life with Mr. Long": Diary of a patient – part 1

“Long COVID is like a rollercoaster – and so is the research involved!”

59 physician appointments, 85 therapy appointments and 6 apheresis procedures in 27 months

“We accept each other, Long COVID and I.”

An experience with Long COVID: “People like to be there for you.”

“I’m getting to know myself better through Long COVID”

"I can't understand the ignorance towards us people affected affected by Long COVID"

"I learned to admit that I can't answer all of the questions."

“Due to Long COVID, I had to get to know my body all over again”

“We want to give our son some normality – despite the Long COVID situation”

UPDATE: The turning point thanks to the vaccination

UPDATE: The turning point thanks to the vaccination

Back to top-class sport thanks to breathing technique

“My accordion shows me my limits, but it also gives me strength.”

The long-term effects of COVID-19: when the business consultant needs advice

Becoming a different person overnight after catching Covid

The long-term consequences of Covid: when the physician becomes the patient

Long COVID has left this motorhead running on fumes

Suddenly hypersensitive to smells, sounds and light

Long COVID sufferers: “There’s nothing to be ashamed of.”

Long COVID and children: "We try to laugh a lot with our son."

A physical therapist with Long COVID: back in shape after 8 months