‘I’m still dizzy and exhausted’
Long-COVID sufferer calls for greater awareness of the condition
A long-COVID sufferer has spoken about the way the virus has caused “drastic” changes to her body and impacted every aspect of her life.
The woman has called for more awareness to help many patients like her who have contracted the virus and have never completely shaken it off.
Anna* caught the virus in October 2022, having had no previous health conditions. But 18 months later, debilitating symptoms have persisted.
Back then, she initially had some fever and cold symptoms, but soon started experiencing typical symptoms of longCOVID, including difficulty concentrating, fatigue and post-exertional malaise (PEM), the worsening of symptoms following even minor physical or mental exertion.
Three months later, she was still hoping it was just a slow recovery. But after about half a year, it became clearer it was more than that.
“I was unable to do even the smallest tasks of everyday life, such as grocery shopping and showering. I was also unable to read, watch films and listen to music.
“I was – and still am – experiencing dizziness, palpitations and nausea when exhausted.”
Anna explained that fatigue was not a feeling of tiredness, but of deep exhaustion, characterised by pain and dizziness as well as the inability to sleep and rest well.
“Brain fog is a lot less peaceful than the word may suggest. I experience it more as a thunderstorm in the brain,” she said.
“I had strong symptoms, including cognitive ones, which meant that even organising help was often overwhelming,” Anna admitted.
Attempts to describe her symptoms have often baffled others, including some doctors, and she has had to keep explaining they were not psychological.
“In this situation, reading about the experiences of others and research findings greatly helps,” Anna said.
Her biggest problem has been not knowing who to talk to about everyday life arrangements
nd and questions about continuing or adapting work.
“I had to learn the technique of pacing to avoid the worsening of symptoms,” Anna said.
“While doctors were friendly, I got most helpful information, including the crucial technique of pacing, by reading, which, in itself, is a difficult task for most of those affected,” Anna continued.
Over the last 18 months, there have been some changes in the symptoms and energy levels, Anna acknowledged.
“Occasionally, however, these make it even harder to know when to stop to avoid worsening symptoms.”
Anna is going through further cardiology check-ups at Mater Dei Hospital’s LongCOVID Clinic, but her GP has said there was nothing more to be done for her main symptoms of fatigue and PEM.
“It was and is difficult to explain the disease to friends and colleagues. I believe that more visibility in the public sphere would have greatly helped the process of adapting to my condition, which was often misunderstood as ‘a bit of tiredness’,” Anna said.
She was trying her best to remain optimistic about a cure. “That is why it is important for the disease to get publicity and for research to get funding.”
Patients like her needed an official website directing them towards medical and social services and information about how to deal with long-term sick leave, or the need to adapt working conditions, schooling, and so on.
Those requiring long-term sick leave and those who had care obligations also needed financial support, as well as support with daily necessities.
Access to anti-viral medication was also called for, given “a big fear” of the worsening of symptoms due to another COVID-19 infection.
While she still managed to work and go about her daily life, this was only because she was “privileged” to have a lot of flexibility at work and because she stopped all other activities.
“I am lucky I have recovered to the degree that I can organise my household – but only by planning meticulously, with short tasks and long breaks, and by adapting my lifestyle. I walk much less than I used to – to shops or to work – and sport of any type is out of the question.”
The hardest part of all this was that even positive input, such as a short chat with a friend, reading a friendly email, or taking a short walk, causes PEM, Anna said.
“It means that to rest, I have to switch off completely; even my thoughts. This is a daily struggle.
“It is also a struggle not to worry too much – because, of course, worrying, too, will give you symptoms and take away energy. Even answering these questions causes symptoms.”