Iain

Iain’s life has changed from working in two jobs, keeping active through rugby and walking his dog before Covid. He now finds it difficult to go out due to worries about catching Covid again and his ongoing symptoms. He caught Covid early on, in the weekend before the first lock down in 2020. As well as the common symptoms, Iain is still badly affected by uncontrollable diarrhoea which has been ‘devastating’ for his life. He has had great support from his GP. Iain was interviewed in February 2022.

Iain caught Covid early on, in the weekend before the first lockdown. He was working in two jobs, running his own small business whilst also working in a local pharmacy. He had set up this working arrangement after having a heart attack. Iain experienced all the common symptoms of Covid as well as gastrointestinal problems. He describes his severe diarrhoea as one of his worst symptoms. After his symptoms started, they never went away. Two years on, over about a 6-day cycle, he still experiences bone ache, mental and physical fatigue, breathlessness, brain fog and diarrhoea that vary in severity over this cycle.

He has experienced a big change in his independence and physical stamina since having Covid. He no longer works and now relies on his wife to ensure he does not forget to take his heart medication. His brain fog means that he can forget to eat and how to do activities he likes. Iain was very active previously, playing rugby, but now he is extremely fatigued after up to 40 minutes of exercise.  He needs to rest to recover from the exhaustion caused by any kind of activity. He finds that normal aches and pains can be treated with paracetamol and ibuprofen, but the bone ache he has had since having Covid-19 doesn’t respond to this.

One of his biggest concerns is catching Covid-19 again. This has made him very anxious about going out and seeing other people. He worries about what others might think about him avoiding them, but this worry also brings on his symptoms. Iain also worries that not being able to keep as fit as he did might worsen his heart condition. He feels like he is no longer himself, and feels that his life is ‘depleted’ and that he is becoming a recluse. He described his experience of Covid as being like having ‘broken a fuse box’ in his body which means he can no longer do even some simple things he used to be able to do.

Since having Long Covid, he has been unemployed for the first time after a long working life. He has found explaining the symptoms to organisations like the Department of Work and Pensions and trying to navigate the benefits system really difficult (‘tortuous’), even with support from the Citizens Advice Bureau. These problems have meant that he has lost out financially. Recently Iain has started thinking about retraining to go back into some kind of work.

Iain has not had any treatment for Long Covid itself but has had lots of different medical investigations. He has had positive support from his GP who has gone through things carefully with him. He was diagnosed quickly within 3 months and has valued being able to speak to the same GP throughout his illness. Having this continuity has been really important for him.

He has had treatment to help cope with some of his symptoms, including from an occupational therapist, a respiratory physiotherapist and a mental health physiotherapist who referred him onto a 26 week programme to help his anxiety. There have been delays in this starting but he hopes it will be helpful. He wants to be able to get to being able to some physical activity because of his previous heart attack. He is currently being seen by incontinence services, to try and work out the cause of his symptoms.

He has accessed some Facebook groups, but found them unhelpful. Because Iain previously served in the military he has accessed veterans’ services, some of which have been very helpful for emotional and psychological support, especially now they are starting to meet face-face. He has also found Wintergreen ointment helpful, not just for his pain but also for his brain fog. He encourages others to try it but to remember that different things work for different people. He suggests other people try to find the simple things that work for them, and not to rule anything out.