Long COVID: “It's impossible for me to go back to work because the symptoms are so incapacitating”

Hello Pompon005, thank you for agreeing to share your story on Carenity.

First of all, could tell us a bit more about yourself?

I am 56 years old and am separated from my partner. I have two lovely daughters aged 21 and 19 and a cat I adopted two months ago.

I work as a principal educational adviser in a secondary school but I am on sick leave at the moment.

I am passionate about photography, genealogy among other things but also about word games.

I don't play any sport because of joint pain and instability. But when I was younger, I played tennis.

When did you contract COVID-19? What were your symptoms and for how long did you have them? What was your experience like? 

I had the first symptoms of COVID-19 on 26 October 2020: Severe fatigue, drowsiness, headaches and sore muscles. However, there was no fever, no cough, no loss of taste or smell. 

At first I thought it was the flu because I hadn't had time to get vaccinated. After three days, I contacted my doctor who advised me to have a COVID test, which came back negative. As the symptoms were still intense, I had a second test on 9 November and which came back positive. To be clear, the nasopharyngeal swab was done in only one nostril only each time.

At first I thought I had the flu, because I had not had time to get the influenza vaccine. After three days, I called my doctor who recommended I get tested for COVID-19. I did and the test came back negative. The symptoms were still intense, I did a second test on 9^th November and this one came back positive. I want to specify that the nasopharyngeal swab was only performed in one nostril each time.

I was not given any treatment apart from paracetamol for the aches and pains and my doctor put me off work until 16 December.

After two weeks, the headaches went away but the fatigue and muscle aches lasted for another 6 weeks, though they were a little less intense. 

Then I had bronchial problems and a bit of fever. I was put on antibiotics, but then I started feeling short of breath when going for a walk. 

A chest CT scan was done and it showed bronchial dilatation. I had an appointment with a pulmonologist, but to this day I've been given nothing to treat my symptoms.

In addition, little by little, I started having concentration and memory problems which continue to this day.

At first, I didn't have a hard time with COVID-19, as I was lucky enough to be supported by friends and also to have stayed at home. It was certainly a difficult time, but being an optimist by nature, I imagined myself back on my feet relatively quickly.

Initially, my doctor told me that the symptoms would subside after two weeks so I didn't worry too much. As time went on, I saw little improvement and the appearance of other symptoms did not reassure me. From mid-December onwards, there were very temporary improvements (1 or 2 days), which gave me false hope. 

And from then on, there were alternating periods of me getting better and then getting worse. 

I thought I would be able to return to work, but this has proved impossible. Indeed, mornings are always a bit complicated for me, I always feel exhausted and have a hard time getting going.

You’ve been having COVID-19 symptoms for several months now. Could you tell us a bit more about them (nature, frequency, intensity)? What are the after effects of COVID-19?

To this day, four and a half months after contracting COVID-19, I have not regained my health.

The aches and pains and headaches have gradually disappeared, but to this day, I still have the following symptoms:

• Fatigue so intense that sometimes the need to sleep is overwhelming and impossible to fight.
• Concentration and memory problems
• Fluctuating muscle pain
• Shortness of breath

From time to time, I get aches and pains again and feel very tired for several days. This seems to be cyclical.

Are these symptoms incapacitating in your daily life? Are you still working? 

It is impossible for me to return to my job because these symptoms are so debilitating in my daily life. I am therefore still on sick leave. I have a job that requires concentration, memory and a certain amount of energy because working with teenagers requires all my faculties!

Your GP requested that you be put on long-term sick leave. Could you tell us more?  Do you think it will be granted? 

Faced with these persistent symptoms, my GP brought up the idea that it may be Long COVID. She asked that I be put on long-term sick leave. As I work for the French Ministry of Education, my GP must fill out a request for sick leave for relevant administration to approve. For my part, I also had to "double my request" and attach her medical certificate stating I have Long COVID in a sealed envelope. 

This request is not automatically accepted; it is sent to the medical committee, which requests an expert opinion from a designated doctor. I was invited to this appointment on 1 March. To date, there has been no response. The expert doctor explained to me that for the time being, Long COVID-19 is not one of the pathologies eligible for long-term sick leave, especially as I also have other health conditions. I explained to him that the current symptoms are new to me and are inhibiting my daily life, much more so than my existing illnesses which do not prevent me from working.

What do you think of Long COVID care? Do you feel understood or supported by healthcare professionals? 

Long COVID is beginning to be widely discussed. An association has been created in France called "Après-J20" to dialogue with health authorities about the care and consideration of this new disease. This allows us to have some information.

My GP admits that he doesn't really know where to refer me because, for the moment, there are few multidisciplinary consultations. My appointment with the pulmonologist was rather disappointing. For concentration and memory problems, I'm still in a complete fog. I think that doctors still don't know how to care for patients with Long COVID and are groping around. So, yes, I feel a bit forgotten at the medical level and it's anxiety-provoking at times because you don't know where you're going.

Do you have other health conditions? If so, which ones? Do you think these conditions may be the cause of your Long COVID symptoms? What do your doctors say? 

I do have other conditions:

• Ehlers-Danlos syndrome, a collagen condition causing hyperlaxity, fatigue and pain… However, this fatigue is not the same type as that experience Long COVID. Both types of fatigue coexist and obviously become incapacitating.
• Type 2 diabetes: It usually is well controlled. However, I notice that I sometimes have hyperglycaemia without knowing if there is a link with COVID-19. My endocrinologist has no answer to this. 
• Sjögren syndrome: I have an absence of saliva, but no diagnosis has been made to date.  

What I have noticed is that COVID-19 has increased certain symptoms such as fatigue and pain. 

As for the question of whether these conditions can be at the root of the Long COVID, I don't think so. 

On the other hand, I am in an almost permanent inflammatory state and this may have allowed the COVID-19 virus to invade the body and attack my weak points.

How do you see the future? What are your plans? 

My current vision is that the authorities stop telling us everything and its opposite, and support research into effective medicines against COVID-19 but also take into account that Long COVID requires care and sick leave. When will we benefit from a long-term illness recognition and a long-term sick leave when it is necessary?

Any plans? None for the moment. As things stand at the moment, I am unable to make any plans. My priority is to regain my energy, my ability to concentrate and my memory. I do however hope I will be able to go back to work when I feel better. 

Taking small steps forward in the hope that long COVID-19 patients can benefit from multidisciplinary care to improve our quality of life.

What would you like to say to other members living with Long COVID?  

What I would like to say to all those affected by Long COVID is, above all, to remain positive, to accept it and let time take its course. Take time to rest, to sleep when you feel like it. Try to stimulate your concentration, your memory by reading, playing board games, a little every day.

Keep social links because it is essential. Indeed, when we are tired, exhausted, we tend to withdraw and isolate ourselves.

And then let's share with each other, let's communicate our advice, and our progress but also our worries, when we feel down. Carenity offers us this possibility and we must use it.

Any last words? 

Take heart, all of you, keep hope and soon we will see the light at the end of the tunnel.

Thank you to Candice for allowing me to write this testimonial!

Thanks again to Pompon005 for sharing her testimonial with us on Carenity!

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