Callum

Callum caught Covid at the start of the pandemic in March 2020 and has moved back to his family home. Although he is still very much affected more than two years on, he has gradually found ways to deal with his condition and find meaning in his life as it is now. Callum was interviewed in May 2022.

Before catching Covid, Callum worked full time as a mechanical engineer. He was busy and liked to ‘pack a lot’ into life. He was a keen runner and had other hobbies and a full social life. Callum caught Covid in March 2020. The first week of his illness was ‘pretty grim;’ he felt exhausted, with nausea, a fever, and severe breathlessness symptoms. He spent the week in bed on his own at home, resting as much as he could, and felt very concerned. He started to feel better and go out again after about 10 days. However, after a very short walk, he started to have severe muscle aches, weakness, headache, and brain fog. He just felt terrible. He stayed on his own ‘in survival mode’ for about 5 weeks. Even a shower or sitting up for 20 minutes would leave him feeling unwell. He developed tachycardia, palpitations, gastrointestinal issues (like stabbing pain, diarrhoea, and constipation), and a disrupted attention span. The investigations that he has had have all failed to find ‘anything wrong’ which has been difficult.

After the ‘huge shift’ in his life caused by Covid, Callum felt so unwell he started to withdraw from his relationships and felt depressed and desperate. He decided with his parents that it would be best to move back home with them until he felt better. He is still living with them over two years later. He felt some grief at about losing his independence and had a sense that he was just surviving. At that time there was no wider understanding that Long Covid existed. Writing a blog about his experience quite early on, helped to raise awareness of the condition. Since then, he has done over a hundred media appearances on Long Covid. Although tiring, raising awareness through this media work has made his experiences more meaningful and has given him a sense that his life has value and purpose.

After a few months off work, Callum tried a gradual return to work and did his very best to increase the hours he could do. After a relapse of his Long Covid symptoms in December, his company indicated that they couldn’t do any more to keep him in work and he was made redundant. It was a shock to be made unemployed and very upsetting, as work was a big part of his identity. The loss of his job made his illness seem more permanent. He was unemployed for around year. He found applying for disability benefits very arduous, and a horrible and dehumanising experience. It has felt like a ‘tick-box’ exercise or a ‘lie-detector test’ instead of a process of trying to understand the extent of needs to cope with his disability. His family have been very supportive. They have helped him emotionally and with practical things, like providing food and doing laundry, and with navigating the healthcare system.

Callum feels lucky in many ways in comparison with some other people and has gradually accepted that he needs to adapt his lifestyle on a long-term basis. This has reduced his feelings of being overwhelmed or hopeless and has allowed him to focus on optimising his quality of life in the present and no longer feeling that his life is only about Long Covid. Callum now works part-time in a very flexible job where his symptoms are accommodated. He is very worried about catching Covid again and is trying to find a balance between precautions and living his life. Looking back over the last couple of years, Callum feels that the process of recovery feels more linear, whereas month by month it felt more up and down at the time.

Callum has not had a lot of contact with the medical profession over the period of his illness. Initially he went to his GP who said he didn’t know what was going on but would treat him ‘like a 15-year-old with glandular fever.’ His GP advised him about pacing, which has taken him time to fully understand how to apply with the help of a physiotherapist he has seen. The GP also gave him access to pulmonary rehabilitation resources online. He also went to A&E. He has had medical tests that haven’t found anything and is waiting for some more now that there is more knowledge about Long Covid. The lack of knowledge and curiosity about the illness and how to treat it initially meant his care wasn’t great, and he is aware people in other parts of the country have had much better Long Covid support. He feels he’s had to advocate for access to any investigations. Recently he has found a GP who is very open and keen to find out more which is ‘the best you can ask for.’

Through his media appearances, he was contacted by an organisation that supports adults with disabilities and was offered resources and support to help learn to manage his symptoms. The self-management strategies he has learnt have been the main thing that have helped him, but he only managed this with support from others too. Callum feels this should be the minimum available to others. He thinks it’s important for people experiencing Long Covid to have access to healthcare professionals who listen and care, will guide them, and who have experience working with people with similar conditions. For Callum, it is important to accept the condition and still find meaning and quality in life, and to advocate for yourself if you feel things are not being investigated seriously. He would like to see a cultural shift to practitioners being more proactive in looking for successful treatments and the mechanisms behind Long Covid. Callum would also like more research into societal impacts of Long Covid, for example on employment rates, and other long term social impacts.

Callum says that it’s worth getting things checked with health professionals if something doesn’t feel right.

Age at interview 30

So, I would say that for, for other people, I would say that… I think that the thing that has most helped me is being able to learn enough about my new body and how it functions that I don’t feel like I am making it worse. And the way that I have done that through self-management, through speaking to people who’ve got lots of experience before has meant that it is a lot of the quality of life in me and also meant that my rest time is more meaningful. And I’m not just doing things for the sake of it. I know the reason why and that is possible to get to that stage. It is possible to get to that stage with your body. It takes guidance. It takes support and it takes a lot of hard work. But it, it, I have found that I have gained a lot of quality of life from this in a way that my recovery hasn’t been able to provide and for people who’ve, you know, if, if something feels wrong in your body it is always worth pursuing. It is always worth speaking to the doctor. It’s always worth pressing for investigations, even if they come back with nothing. You know, it’s much better to check. It’s always much better to find out these things, rather than kind of submitting to the culture of, ‘Oh well, you’ll be okay.’ I’ve got friends who, upon investigations, things have been found. And had they just waved it away as, it’s just Long Covid. Nothing to worry about. They could be in a much worse spot now. So, you know, those, those would be the, the two things specifically I would say is, you know, the journey of becoming more aware of your body and learning how to deal with your condition and not submitting entirely to it, a culture of ‘Oh well, you’ll be fine. Just wait it out.’

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Callum had to move back home with his parents so they could care for him.

Age at interview 30

So, generally speaking, you know, like that period where it was possibly that I wasn’t getting any better. My mum came round to drop off some food for me and we were, you know, three metres, four metres apart, down the hallway. And she just saw me and she, she, the thing that worried her wasn’t necessarily my physical state. But she said it was my mental state. And it was that I was so desperate. And I, and she cried all the way home apparently on that drive home and decided that I was going to come back and stay with them. There had been some chat with me and my girlfriend about whether she, she would come up and look after me. But I was against that idea because I knew how much of a state I was in. And I didn't and I knew then instinctively that it would be a shock for anybody to, to realise that they had to give their partner so much care as well as she had to do her full-time job and deal with the boorach that I had left behind after five weeks of, of being a mess. So, I decided then it was, it was the right move for me to move back in with my parents. I said then, I remembered my mum and dad like, I’m only gonna be here a couple of weeks until I get, get better again. Here I am two and a bit years later.

Yeah, so…so, I think that both my parents have been very, very understanding and have been very, very supportive. I had been living with my parents up and to save money until I bought my flat. So, I bought my flat in 2019 so there was only about a year’s gap between me moving out and me moving back in. I was very reluctant to move back in because I had just left. I’d just flown the nest and I didn't really wanna be boomerang kid and come back, again. I think that…on one hand I think it’s been a positive because my parents have been able to see me and have been able to look after me and rather than me being elsewhere or in some unknown quantity and kind of under their, under their wing, which I think is good. I know it’s had like a you know, the amount of food that in the last sort of stuff that I’ve potentially cost them a substantial by this point, but I think that that is not in any way begrudged at all.

It’s difficult for me to say, I think, because at times it just feels like how it did before when I was living here. The dynamic is very similar. My mum has been my biggest advocate and especially because she’s a nurse kind of has helped me navigate the NHS. My dad is…it’s very sweet actually. And he’s recently been trying to read up on Long Covid and treatments and stuff. Which is just very sweet, very nice of him. I… and my younger brother he’s looking for work at the moment. Like, you know, my family have been incredibly, incredibly supportive, you know, everyone has. And if it has caused, I don’t know if it’s me being, I don’t think me being at home has caused any issues at all. I think in some ways it’s almost better that they’re able to see me on a day-day basis. And basically, being my carers isn’t something that has caught them off guard, they’ve taken it in their stride I think they would like it if I could walk the dog more [Laughs]!

But really that’s the only, you know, I think that’s like I’ve been given a lot of freedom and a lot of autonomy. And I think, you know, obviously my condition has been a great deal of worry to the both of them. And occasionally I will say something to my dad, and he’ll just be like, [shakes head, exhales] “God”, you know, like it all…like it’ll hit him, you know… But I haven't felt a sense of any sort of resentment or anything because I’ve moved home. There isn’t any sense of I’m not paying my way or anything. It is, you know, a long road I’m on, but I am very grateful and thankful that my family are not, are like the one of the biggest supporters that I’ve got.

Yeah, so, so I didn't need help with showering ‘cos usually I would be able to find a window at least once a week for ten minutes to get myself under a shower when I was at my worst. But yeah, there, you know, the vast majority of, of the food that I eat isn’t prepared by me. And, you know, like tidying the kitchen away afterwards sounds it’s such a small thing. But at times would be over, overwhelming for me. Like my laundry like all the housework like I don’t touch any of that. I can make myself food. I can do bits and pieces. But it’s with, not, not necessarily consistently. You know, there have been times where I’ve skipped meals because I’ve been too tired. Or too busy in other ways and I just don’t have the capacity to put, to eat. So, yeah, in and you know, I would joke at the start particularly like you know, as if I’d regressed back to being 12 years old again in terms of what, what my parents were doing for me. And, I mean, yeah, it’s true, it’s true to a degree. And that’s, it’s not easy like it’s not easy to sort of find that your independence and your autonomy is curtailed like that, but it’s much better than me trying to do it all myself and causing an injury.

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Callum is focused on improving his quality of life rather than pinning his hopes on a complete recovery.

Age at interview 30

Yeah. And, I’ve had a very up and down relationship with my sense of hope, with my sense of what like reasonable expectations and outcomes are from this. So, at the very start like I held, I hung on for a very long time to the idea that I’m just a week or two away from like getting better… And, you know, there’s still a part of me that obviously, that thinks that could be possible that like, you know, like I could wake up in, you know, some period of time away and it’s just gone. And that has happened to people before and not just through acts of God or like Mother Theresa, you know, but I think that…there’s another part of me that kind of thinks that that kind of hope is a bit counterproductive that rather than me hoping that it would get better, that there’s lots of things that I can do, I do which improves my quality of life now. And I’ve kind of evolved from that sense of desperately hoping that I just, I’m able just to get better. That it just happens. Through to occasionally having like moments of optimism, which is pinned on medical advances, and understanding that research is happening. Some very promising things are coming through.

It just may take, you know, a long time for that to filter through. But I’m gonna be here for the long run. I have made that decision. I’m not going anywhere as long as I can help it. So, I think that helps, that sense of ‘Well I’m here like I’m in, I’m in my life like I have enough value. I have enough things that are going on.’ If I just wait around long enough, maybe spontaneous remission will happen. Maybe like medicine will find a cure. Maybe my quality of life will continue to improve. Maybe I just get a little bit better and it’s good. And I think that again like I, my recovery at times has felt very non-linear.

But on the scale of years, it has, it looks more linear and it looks more like a slow, steady recovery. So, it also makes me feel like well, you know, that’s the case. But I don’t pin too much of an idea of what my cure looks like or my recovery looks like because, you know, even six months ago, the things that I’ve managed to achieve for myself and quality of life improvements that have come from like, you know, understanding my pacing better. Recently, I bought a lounger, like a camping lounger luxury bed because I’m a bit extra! And that meant that I was able to attend an event where I was able to lie down, just be on the bed and do a bit of work on my laptop and then lie down for a bit.

But I don’t mind jumping those hoops if it means that I have a day in bed and I’m not even really in bed like I’m at 60% of my baseline. I, you know, like I’m still able to like get up for tea and stuff or like you know, like I feel comfortable getting up, going to the toilet because sometimes when I’m a bit overdone it’ll be quite uncomfortable for me to go use the loo. So yeah like I yeah, I feel like the stage that I’m at now is one where I can more confidently make those changes that I need to. And, I guess that had tied into my whole means that I don’t have to hang a carrot in front of me. I can just live. I don’t have to necessarily think about getting better. It’s something that’s maybe in the back of my mind pinned to like I said I get better or you know, a cure is found or whatever or treatment is found. But my day-day isn’t pinned on me getting better. It’s pinned on me trying to optimise my life better from my disability.

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