Anthony is 66 and retired. He thinks he caught Covid while using busy motorway service station facilities in March 2020. Within a few days he developed an unpleasant illness, with headaches, cough and fever, but ‘sat it out’ at home. He never felt he needed to go to hospital. After 2 weeks he felt better but then spent April 2020 feeling completely washed out. He didn’t think at the time that he’d had Covid because he didn’t have what were then seen as ‘classic symptoms’, such as loss of taste and smell, serious cough, breathlessness or respiratory issues. For the first time, he started to get a new type of headache and a new form of tinnitus. Testing wasn’t available during his initial illness and any PCR tests he’s had since have been negative. In the earlier stages of his illness, Anthony tried to get back to riding his bike and being more active. He noticed however that his energy levels would crash for the following days and weeks. He also finds mental activity tiring and is no longer able to concentrate in order to read or pursue other hobbies.

Before he became ill, Anthony’s life was active. He enjoyed walking, cycling, gardening, reading, photography, socialising, travelling and was looking forward to volunteering with a local nature reserve. Since having his illness he feels that almost everything has been put ‘on hold’. He finds it quite distressing to think about how little he can do now compared to before. He has had to cut right back on social interactions, which he has found exhausting – he even has to cut telephone conversations short if he starts to feel unwell. Anthony said that if he had still been working, he would have been unable to work, but he spoke about feeling invisible because he is retired and his illness has been even more ‘unseen’ than for someone who would need to take time off work.

Anthony has suffered from tinnitus since he was young but noticed a sudden change in its sound quality at the time of his initial illness, to a low-pitched, ‘booming’ sound. This was investigated with an MRI scan but no underlying cause was detected. Anthony’s ongoing symptoms include: fatigue, tinnitus, headaches, brain fog, and dizziness. Anthony describes experiencing very specific types of headaches which have changed over time. They were initially headaches with flashing lights (in a horseshoe pattern) which he had never had before. They now are very severe sudden headaches which stop him in his tracks so that he has to go into a dark room. These have sometimes been worse when he has been lying down.

Anthony has consulted his GP several times during his illness. He has had blood tests and chest x-rays. His GP referred him to a Long Covid clinic, where he was formally diagnosed with Long Covid in early 2021. He is still being seen there. Being introduced to ways to carefully manage his energy levels has been helpful. He felt it was useful to be listened to and to have his symptoms affirmed. He is learning how to pace himself and to stop before he gets tired. He took part in a programme run by the English National Orchestra, which was really useful and helped him to focus his mind on something different and to relax. He still does some mindfulness exercises.

He has tried several other things with mixed success, including antihistamines and CBD oil. He stopped both because he didn’t think they helped. Anthony struggles with the lack of understanding about the physiological or biochemical mechanisms of Long Covid, and why it affects him as it has. He does not yet feel he is in a recovery phase and has now had his symptoms for around 2 years. He finds it frustrating that there are so many uncertainties about Long Covid and few answers about what can be done to support people with Long Covid.

His advice to others is to take their condition seriously and to make sure their doctor takes it seriously too. He thinks it is important not to push yourself too much and to remember not to overlook that other underlying conditions may be involved.

In October 2022, Anthony provided an update on his condition. He was relieved to have noticed a marked improvement in his symptoms since late August 2022. He had more physical and mental energy, and was slowly getting back to some gentle physical activity. He no longer experienced bad crashes after a busy day. Those close to him had commented that he was beginning to look, sound and act more like his pre-Covid self. Anthony could not think of anything that he had done or changed to bring about this improvement.