Zubair

Zubair had Covid in March 2020. He had mild symptoms of fever, loss of smell, and a temperature. Since then his health has deteriorated. He has muscle pain at night, some hearing loss, and a change in his eyesight. The muscle pain badly affects his ability to sleep at night which makes it difficult to function during the day. His employer has been very supportive. Zubair was referred for physiotherapy and to the rheumatologist but the pain is becoming worse. He is currently on the waiting list for the pain clinic and is waiting on the results of an MRI. He would like to see greater recognition and support for muscle pain as a Long Covid symptom in the Long Covid clinics. Zubair was interviewed in May 2022.

Zubair had Covid in 2020 and had mild symptoms of fever, loss of smell, and a temperature. An antibody test taken at a later date showed he had had Covid.

Since having Covid, Zubair’s health has deteriorated. He has muscle pain at night in his hip/pelvic area which badly affects his sleep as he has to keep turning over to relieve the pain. The pain is so bad at night that he has to use two hands to support himself as he turns and it’s very hard to get out of bed because of the pain. He wears a pelvic and thigh compression belt for sleeping at night which helps with the pain.

His GP prescribed naproxen, but the pain was becoming worse so he contacted the GP again who referred Zubair to the physiotherapist. He had exercises explained over a video call but they haven’t helped. He was then referred to the rheumatologist and had an X-ray but nothing showed up. His GP prescribed steroid injections but when he saw the doctor who would be giving the steroid injections, he told Zubair that it wouldn’t work in the place the pain was, so was referred back to GP and referred to the pain clinic.

While Zubair’s GP is supportive, he told Zubair he can only refer him to a pain clinic as the Long Covid clinic is for people with long-term breathing problems, not pain management. Zubair would like to see Long Covid clinics include support for other symptoms of Long Covid such as muscle pain. At the time of the interview, Zubair was waiting to be seen at the pain clinic and receive the results of an MRI. Since the interview, Zubair reports multiple further investigations and treatments (such as an epidural and a Qutenza patch) for the pain. None have worked, however, and Zubair believes this is because the pain is Long Covid-related. Zubair’s quality of life is worse and he feels mentally drained because of pain and lack of sleep.

Zubair also has a change in his eyesight since having Covid and some hearing loss which was confirmed in a hearing test and eye test and he now wears glasses. He now experiences short term memory loss and has to write things down. Zubair had an antibody test taken in July which showed he had had Covid. He thinks he may have had Covid again in Winter 2021/2022, although he can’t be sure because although he had Covid symptoms, his antigen tests were negative.

Zubair’s employer has been very supportive with allowing him flexibility around how he completes his work if he has been affected by lack of sleep. He has been working from home for the last two years. Without a supportive employer, Zubair says it would have been hard to work full-time.

Zubair goes to prayers at the mosque and helps at his community foodbank, but otherwise he says he isn’t as active as he used to be. Zubair is supporting his wife and son who have long-term medical conditions that limit their ability to do things outside the home. He says it is distressing to know he is now also ill and the pain and the lack of sleep is getting worse. He copes with the pain by distracting himself. If he is not working, or supporting his wife and son, he helps at his local foodbank which was set up in 2020 and has become a “community hub” for people.

He knows that understanding of Long Covid is new and developing and it is still being understood how Long Covid affects people. He also understands that the focus of healthcare so far has been on Covid and developing a vaccine. He learns about Long Covid on medical websites and on the news. Zubair is a Covid Health Champion for his local Public Health team. He receives information from them about Covid and passes it to people in his local community. He also shares as much information as he can with people through WhatsApp, as he wants to raise awareness of Long Covid. He finds if he talks about his experiences, others share theirs too.

Zubair reminded us that not everyone has internet access, especially in his community.

Age at interview 47

So they pass on you know information to us for us to pass it to the community, and anything I find about Long Covid, or anything to do with Covid, I actually…I used to actually share them on Twitter and Facebook and Instagram, but because I’ve been unwell I’ve stopped doing it, but mostly if it comes in WhatsApp, I just pass it to the people within the community who I know, even you know like I said, if I read anything about the Long Covid, I’ll pass it on. But a lot of people don’t understand because…especially older people, they’ll say to you, “What’s that?” and then you have to explain. It’s like my mum and dad, I’ve explained to them, they will not understand it. Some people don’t have, for example, because of digital…you know, inclusion. It’s one problem in our [inaudible] community, you know they don’t have access, or they don’t know how to use the phones or whatnot, or if they can’t read or write, so that information doesn't get to them, unless if somebody tells them verbally, but even telling them verbally, they will not understand. You know so, it’s for…mostly for older people because of the situation they’re in. But I think the Long Covid, in the media has been quite…out there quite a lot. You know so it’s well known to people and well known to medical professional, but how well it’s understood, obviously it’s…depends on the people and the community.

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Zubair cares for his wife and son on top of dealing with his own Long Covid. He tries to keep busy to distract himself from his symptoms.

Age at interview 47

In terms of how it affected family, you know, life, you know again the work-life balance, home… you know, work and home-life balance is very balanced because the employer is very flexible and my wife she has got long-term differing medical conditions: she’s disabled, she’s not well, so… and I also have a son, he’s got a medical condition as well, he was born with it, he was born premature, so you know we both care. So, kind of we… it’s like me and my wife, she cares for him and then I’ll kind of care for her where I can. So, you know hospital appointments and you know there’s too much going on with everybody with… within us, you know in the family, health issues from… from when my son was born, which was 23 years ago. So, you know it is distressing when you know you're suffering as well as everybody else is suffering, and it’s getting worse, affecting you know mainly the pain and the sleep.

For me it’s very hard, sometime you do get depressed about it but then I think when I work, the… you know when you're working, busy working or doing something, your mind is away from pain, yeah, or kind of worrying about your… what you're going through, and I think it is very important if you obviously are not able to work, I’d say that you volunteer somewhere. And I have been volunteering… and in… as an additional thing since we started Covid in 2020, we opened a foodbank locally. So I’ve been helping with… you know, we’ve helped like thousands of families and you know whatnot, and until today, that foodbank now it’s actually… has become a community hub for the local people, so you know… so that… these thing keeps your mind you know away from… you could call it depression, but I don’t really call it depression, to be… well, to me depression it… it shouldn’t be there, it’s the worry basically. So yeah, so that’s what’s been happening at the moment.

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For Zubair, it’s important that Long Covid is recognised as a disability in order for people to be able to access support.

Age at interview 47

But again, as I go back to it, there isn’t any… ‘nough research out there, you know it’s only we… what… we’re in the third year, right, of Covid, so you know I think… I can’t remember in America or somewhere, the Long Covid is now recognised as a disability, but in NHS they don’t recognise that and I think that, again, it’s down to the research, that maybe it’s going to take many years before it is recognised as a disability, and again, because it affects different people differently with different you know parts of the body, you know how do you differentiate you know the condition either as a normal condition like a normal, let’s say, just a muscular pain rather than Long Covid? So maybe it’s hard for… for them to do that yet, but I think going forward, the NHS will have to recognise that, because if they don’t recognise it, then I kint… I think it can affect people differently. You know, for example, if you take sick leave, what are you going to write? You know or… or if you're trying to claim disability benefits… you know because if you just say muscle pain they might not take seriously, if you say Long Covid they might do, I… you know… you know it’s just my opinion on that.

But I think people out there, you know whether it’s an employer, you know a medical professional, or anybody, they need to take this seriously that the Long Covid does exist and you know you’re just not making it up. You know why would you make it up? You could just say, ‘oh, I just have muscle pain.’ OK, you know but then if you have one thing and then the thing is when you have Covid, just after a Covid… like, you know you contract the Covid, these things started so it’s just not coincidence everything happens right after, or it’s because of your age you know, and that’s what I believe, it’s happened and then it’s just happened after, you know it hasn’t happened after a year or two years. You know so definitely Long Covid, but for me it’s Long Covid you know?

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