Paul
Paul is a senior manager at a university and lives with his wife and 10-year-old daughter. Ethnic background: White British.
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.
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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 financially – 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, and 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 professionals 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 was referred when his symptoms suggested he might have had a stroke. He thought there is a lack of understanding of the need for more holistic support.
Paul was referred when his symptoms suggested he might have had a stroke. He thought there is a lack of understanding of the need for more holistic support.
I was never told, no one ever said to me “This is in your head, you’re making it up, I don’t believe you, you know, you’ll get better, you’ll get better soon.” And for example when I had the pins and needles in my face and there was a genuine concern that Covid had caused something and they wanted to look into that so I mean it’s with my GP practice it’s always difficult to get an appointment like it’s really hard but you know for example with the pins and needles in my face they thought it was a stroke, they referred me straight on to the HOT clinic, you know, in the A&E as an outpatient so the support was there very quickly.
I think, you know, there was one locum doctor who sort of said to me oh you, you know, it’s just gonna take a bit longer you’ll get over it and, you know, that advice might have been true for some people and that is exactly what’s happened so, you know, I don’t begrudge him saying that to me as a, you know, so flippantly just sort of but I do think that, it’s interesting that the GPs and the consultants I spoke to have just a very medical view of the condition and, you know, there’s not an understanding I don’t think of the holistic aspects of, you know, requires support, I think and that’s a bit, all of that, you know, I had to look into myself really.
Paul explained how it was even difficult for family members living in the same house as him to understand what he was experiencing. He said “When you’re in a constant state of fatigue, you don’t have the energy to explain.”
Paul explained how it was even difficult for family members living in the same house as him to understand what he was experiencing. He said “When you’re in a constant state of fatigue, you don’t have the energy to explain.”
Yeah, so I mean as an example we managed to get away to North Wales over New Year and it was the first time I’d seen my wider family, so 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 they can fully understand it so that was, 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].
I mean actually that was, once again one of my questions how family are responding because one of the issues that sometimes comes out is, as you’ve alluded to, is sometimes other people don’t really understand.
Yeah, I think that’s definitely been a journey for us as a tiny little family, the three of us in our household and part of that is that it takes a lot of energy to explain to people what you’re experiencing and if your condition is one of, you know, a constant state of fatigue sometimes you don’t have the energy to explain but people are only, even your nearest and dearest, you know, I think are only able to comprehend so much from, you know, observing and witnessing, you know, how you’re doing and I, you know, I’ve had to be quite proactive about explaining what I can and can’t do and, you know, maybe giving reasons for that. But I do think now two years on [wife] and [daughter], they couldn’t be more understanding and, but that, that’s taken, that’s been quite a journey and there have been frustrations, you know, I’m sure they have been frustrated by me at times and I’ve been frustrated when I feel like people don’t understand or people maybe don’t have your best interest, it feels like they don’t have your best interest at heart.
And I also think one of the symptoms of the condition, there’s some vicious circles here if you’re not careful. One of the symptoms of the condition is, you know, post-exertional malaise from, you know, too much physical exertion or too much cognitive exertion or too much emotional exertion and I think one of the most unhelpful things is to get yourself in a position where you’re resenting family members or people that you live with for not understanding you because I’ve seen this myself, you know, where I’ve had some dips where you’ve gone into a period of like resenting or been frustrated with people and that takes, seems to take up a lot of energy, so it’s not worth, it’s just, if you can get yourself into a position where you’re able to, you know, talk about these things and have that understanding and I do feel like, you know, they’ve been incredibly understanding but that’s taken time as well.
That’s really interesting so it’s almost as if there’s a lot of tricky interpersonal relationship negotiation that has to be navigated.
Yeah and I’ve gotta 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 [pause for 6 secs] in some ways it changes everything, in some ways it changes nothing and 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, around the house, taking people places, and all of a sudden when you can’t do those things you do question “Well what am I contributing here,” you know, 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’s enough in itself.