Paul

Paul caught Covid at the end of March 2020 and two years on is still suffering ongoing symptoms, with limited mobility, muscle fasciculation, extreme fatigue, brain fog and post-exertional malaise (PEM) (the worsening of symptoms following even minor physical or mental exertion). Paul is currently on a pulmonary rehabilitation programme and has accessed a Chronic Fatigue Service for physio and mental wellbeing services and support. Paul believes in a holistic wellbeing approach and thinks nutrition and positivity are important to recovery. Paul was interviewed in January 2022.

Paul caught Covid at the end of March 2020. Paul developed tightness around the chest but didn’t have a cough, a more recognised symptom of the time. Testing was not available at this stage of the pandemic. Paul suspects his wife and daughter also had Covid then but had mild symptoms. Paul recovered initially from Covid after a week but then soon began to feel ill again. At the time the government were talking about symptoms of Covid only lasting 10 days, but in May he discussed the idea of Long Covid with an acquaintance, who was also still experiencing ongoing symptoms. For Paul, the idea that his symptoms would get worse and last for over two years was unthought of at the time.

The impact of Paul’s Long Covid symptoms on the family has meant “expectations about what I can do and what we can do together, you know, there’s been some difficult moments.” Paul was a very fit and active dad before Covid – climbing mountains and lots of outdoors experiences and “that’s all changed, you know, overnight really…. at the moment I can only walk for about five minutes.” He has had to adapt his life. During the pandemic they got a puppy and now just his wife and daughter go out walking together, but he meets them at the end in the car. Paul said in the past he may have defined himself by the things that he could do, and it did lead him to question what he was contributing to the family, but he advises “try and keep talking to [laughs] the people close to you,” and to be open with your friends and family.

Paul’s workplace have been extremely supportive, and his illness didn’t initially affect him financial – initially he was signed off sick for five months – then in September 2020 he began a very gradual phased return, “And I’m absolutely convinced that their flexibility and support permitted me to make them, allowed me to make the recovery that I did make from September 2020 through to May/June 2021.” At times Paul has overdone it at work and this has held back his recovery. He is “pretty sure that’s why I am where I am now.”

Over time Paul’s symptoms have included muscle fasciculation (a brief spontaneous contraction of the muscle), post-exertional malaise (PEM) (the worsening of symptoms following even minor physical or mental exertion), tinnitus, sleep problems, extreme fatigue, neurological problems as well as brain fog and chest pain.

Paul has had a number of medical investigations over the last few years, but his results were always normal and see himself as lucky that “no-one ever said to me “this is in your head you’re making it up, I don’t believe you,” and that the health professional treating him have always treated his symptoms seriously. He is currently on a pulmonary rehabilitation programme and has accessed a Chronic Fatigue Service for physio and mental wellbeing services and support. Paul believes in a holistic wellbeing approach and thinks nutrition and positivity are important to recovery – this approach is something he knows the NHS is not currently very good at: “if there’s not an obvious medical explanation then they don’t really know what to do with you [laughs].”

Paul advises people “to be compassionate and kind to yourself- psychologically it’s important to, if possible, get into a positive mind-set.” Moving forward Paul wants to “build back in a more balanced way” and prioritise his own health, well-being and his family.

Paul has had to “re-evaluate who I am” and his role in his family, which used to be based on what he could do.

Age at interview 46

Yeah, and that’s, I’ve got to be honest that’s in a context of people who love each other very dearly as well. It’s not like we, you know, we have a, my wife and I, you know, haven’t had a relationship that’s fraught or tense but, but this has certainly put, you know, a lot of pressure onto that and I mean part of that is because…in, in some ways it change, in some ways it changes everything, in some ways it changes, it changes nothing and that’s the, that’s, that’s what some people have helped me to understand is that, you know, the things that I’m able to do don’t change, you know, who I am as a person, what I’m able to contribute to our sort of family and our relationships and I think that’s been, that’s definitely been something that I’ve learnt, because probably in the past I have defined myself by the things that I’m able to do, You know, round the house, taking people places and all of a sudden when you can’t do those things you, you do question well what am I contributing here, you know, to, to our family and I suppose people helping me to understand that, you know, just being who I am and the love that I give in conversations that we have and so on that is, that’s enough in itself.

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Paul says he’s trying to “build back in a more balanced way,” for the well-being of himself and his wider family.

Age at interview 46

I’m one of seven children and my brothers and sisters have sort of kept in touch sort of periodically but I don’t think, unless you’ve lived with someone who is experiencing this I don’t think, I don’t think they can fully understand it so that was, you know, we were, you know, went down to the beach and, you know, even the little toddlers were walking for a lot longer than I was and that was, you know, I just had to sit on the rock and wait for them while they carried on the walk and then they came back. And you know, it feels strange, but I’ve sort of got over that really. It’s more, it feels like for other people, I think other people are a bit, I mean my sister was just in tears with me saying how sad she was for me, and I suppose I’ve got beyond that, really [laughs].

But it’s yeah it’s when, when you define yourself by what you do for other people that’s a really, that’s a really big change and I suppose what I’m trying to do is I’m trying to see this as a gift that this is giving me an opportunity to sort of, sort of revaluate, you know, who I am and what I contribute you know, issues of identity and relate to work as well and, you know, what the role I have in the family and what you contribute to society and that’s, that’s quite scary because in a way the rugs pulled from under your feet, everything that you thought was true, you know, those things aren’t necessarily no longer the case. But it’s trying to see it as an opportunity as well yeah.

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Paul’s daughter gets sad that she can’t do a lot of the things she used to do with him.

Age at interview 46

So, I mean I remember my daughter saying to me, I just want my dad back now. When, you know, she, she wanted to go to the park and play football and there’d be times when I thought she’s not really understood what I’m experiencing and then sometimes she just absolutely blows me away with how understanding and empathetic and perceptive she is of you know, where I’m up to and how tolerant she is of that and she sort of accepts there are things we can’t do now but, you know, she’ll say “Oh daddy, we will be able to do this when you’re better and, you know, I’m looking forward to this daddy” and she’s been remarkably resilient really [daughter],in terms of adapting to that. And I suppose I have to adapt my expectations of what it means to be, you know, a dad because, you know, I probably was the dad who was very active with my daughter, climbing mountains, lots of outdoors experiences and, and that’s all changed, you know, overnight really.

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