Susan caught Covid in September 2021, and initially experienced flu-like symptoms (muscle aches, temperature, and fatigue, feeling generally unwell) but no cough. After about 10 days, her breathing got worse. She checked her lung capacity on a device at home and contacted 111 because the reading was very low. After a long wait, she got a call asking her to go into a clinic, where they checked her blood pressure which was very high. She then got immediately sent to Accident and Emergency where she had a range of hospital investigations. She was discharged and asked her doctor to monitor her blood pressure.

After a few months, her blood pressure returned to within the normal range. In the meantime she had an appointment with an occupational health. She initially tried a phased return to work from December, but this was too soon. After she did her first morning’s work, she felt really unwell the next day. The following week she tried doing a morning’s work again, but again felt totally ‘wiped out’. During this time she also had to care for her mother who was dying. She said she had a ‘big crash’ in January, experiencing extreme fatigue, and developed ‘unbearable’ insomnia that only improved with medication, which she still takes.

After five months she developed tinnitus (ringing in her ears) that gets worse on days when she is tired or does too much. She has not fully regained her sense of taste and smell and she still has post-exertional malaise which makes it difficult to do her job.

Before catching Covid, Susan was working as a teacher. It had been a stressful and busy time with the challenges of teaching during the Covid restrictions earlier in 2021, but she and her family were enjoying the return to more normal, busy, family life. Because of her ongoing symptoms, she now  feels like she is ‘just existing’. She feels tired out by small things. Her son also has Long Covid which has reduced the activities she used to do with him.

Partly through advice from the Long Covid clinic, she has realised that she needs to take very regular breaks to pace her activities. She now tries to only do ‘the essentials’ and has cut ‘right back’ on how much she does each day to manage her post-exertional malaise (which for her is extreme fatigue after doing too much, that sometimes arrives days after the activity). This feels like a total weariness and aching all over and heavy muscles.  Even short conversations (e.g. chatting with her neighbour) are exhausting. She has also learnt that pushing herself and just ‘carrying on’, as she normally would, makes her worse.

Susan has seen an occupational therapist, has had regular contact with her GP and occupational health services at her workplace, and has been referred to a Long Covid clinic. She has been proactive in finding information, especially through Facebook groups for herself and her son. She has shared information with her employers to help them to support her. As well as the insomnia medication, she takes Vitamins C and D and magnesium.

She had to wait a long time to join a Long Covid rehabilitation programme that she is hopeful will give her more strategies to manage her symptoms, and in the end a phased return to work when she is ready. Through doing this programme, she has realised that she may not recover completely to where she was before and she may need to consider changes to her career.

Susan thinks Long Covid is not well understood in society in general because it is ‘so new’. She finds that keeping a note of her symptoms is useful, and can help when speaking to the doctors, especially because doctors are still learning themselves about Long Covid.

Looking back, she wouldn’t have pushed herself to keep going as much if she had known that could slow down her recovery. She emphasises that people should be proactive in finding information because it is new to everyone. She also recommends trying different things to see what works. Her advice to health professionals is to be empathetic and understanding, to see the problems as real, and remember that people’s symptoms vary so much.