Michael

Brief Outline:

Due to his rheumatoid arthritis, Michael shielded initially, then contracted Covid upon returning to work in July 2020. He spent 11 days on ICU. His recovery was initially quick, then stalled. Michael still suffers from concentration problems and fatigue.

Time of interview June 2021

Background:

Before falling ill with Covid, Michael (53) worked as an IT support officer at a school. He lives with his father who was also hospitalised with severe Covid. Michael is considering retirement due to his symptoms following his stay in ICU. Ethnicity: Black British.

More about me...

Michael works as an IT support officer at a school. During the first national lockdown of April 2020, he worked from home for three months. Because he has rheumatoid arthritis, he was advised to shield. In July 2020, following the completion of a risk assessment by his school, he was assured that changes would be made to his working environment, to enable him to return to work onsite safely.

In September, Michael developed symptoms after spending time at work with a colleague who later tested positive for Covid. His manager sent Michael home upon seeing that he felt unwell. Michael self-isolated at home, where he lives with his elderly father, and ordered a PCR test online. The result came back positive. Over the course of a couple of days at home, Michael felt increasingly breathless and unwell. He tried not to ring an ambulance as he felt others may need it more. Ultimately, it was his sister who called for an ambulance for him.

Admission

The paramedics came and measured his oxygen levels and blood pressure. As it was very low, they decided to take him into the hospital.

Michael hazily remembers time after admission: he remembers receiving oxygen through a mask. Michael remembers being told by a doctor that it was not working for him. He later learned that he was taken to ICU afterwards, where he was sedated and intubated.

Intensive care

The ICU he was taken to was in small side ward. It was “touch and go”. Michael’s sister was told (and relayed to Michael later) that he was gravely ill and had a 50/50 chance of survival. During his time in a coma, his sister made regular contact with the ICU and relayed the information to others.

Michael remained on a ventilator for 11 days. He has some memories of doctors and nurses at his bedside, who seemed to be adjusting tubes, remove secretion and other things. They would also ask him questions to gauge his levels of confusion and pain. During his time in ICU, Michael was very confused due the effects of the strong medication that had kept him sedated. At one point he was convinced that he had been flown out to be treated in another country, a hospital in Marrakech, Morocco. He feels strongly that this was all the more real to him since, he was not allowed visitors and had no exposure to the outside world due to the restrictions on hospital visits.

When Michael was weaned off the ventilator after 11 days, he was put on an oxygen mask. He experienced hallucinations of flashing lights, colours and sounds.

The ward

When he was discharged out of ICU, Michael could breathe on his own, however, he was still weak. The move out of ICU was a “bit of a shock” – previously a nurse had always been keeping watch over him and being on the general ward entailed no such constant monitoring. Initially he was the only patient on the Covid ward he was moved to, but he was soon joined by other patients. Amongst them was his father, who was also admitted to hospital with Covid. Their beds were placed in opposite sides of the room so that they could wave at one another. Speaking to other patients did not really happen. Whilst on the ward, his sister would call and try to lift his spirits. Michael remained on the ward for about two weeks before he was discharged home.

At home

Michael was given a walking stick at discharge, as he still had a poor sense of balance. Michael was initially given a carer who came three times a day, however, as he was recovering quickly, and could do things for himself, he no longer needed this support. He has also had phone consults with an occupational therapist. Michael has also been in touch with his GP, who initially did not even know that he had been in hospital.

Although people said he needed to pace himself, Michael took quick steps in terms of recovery. He got stronger every day. Retrospectively, Michael feels this may have been the steroids that he had been given, because his energy levels drained as soon as these wore off after two weeks. He began to feel like he was backpaddling. Since then, he has bad days – when he can barely get out of bed, due to fatigue – and good days – on which it is possible to get out of bed and do small tasks, or go for a walk. He remains breathless, partially in relation to the scar tissue in his lungs related to his Covid infection.

Michael’s sister, who suffers from Fibromyalgia – a long-term condition causing pain and extreme fatigue – has given him some tips regarding how to deal with his fatigue. For instance, she shared the insight that when he cannot seem to be able to get out of bed, he does not have to get out of bed. She helped Michael acknowledge that “some days will be bad”.

Michael feels he has recovered “60% of [his] previous health”, and, at present, does not feel he needs a lot of information about Covid or ICU. He thinks this lack of concern may be linked to his diminished ability to concentrate. Michael has been referred to a long Covid clinic and at the time of interview was waiting for an appointment with them.

Michael has worked in his current job for 23 years and has rarely taken a day off sick. He remembers a nurse in hospital telling him that he may not get back to work. Although Michael did not want to believe her then, he now feels that she may have been right. Covid has changed Michael’s outlook on life: “maybe the cycle of going to work, eating and sleeping is not the best way of going about it.” As Michael feels that he may never be well enough to return to his normal job, he is now considering early retirement.

Michael contracted Covid when he went back to work after a period of homeworking.

So, in the very beginning do you remember when you first heard about Covid? And were you particularly worried about yourself?

I remember a news item, would have been probably the middle of December, about a virus which had taken hold in Wuhan in China. And to be honest with you I didn’t think that much about it until I heard when the first cases came to the UK and other parts of the world.

So, I was carefully monitoring the amount of cases that we were having over here, and I think in the early days I did my best to, you know, wash your hands and take all the hygienic precautions you can. And I would find every day I would have to get out, travel on public transport to go to work, but that wasn’t a problem for me. And so, in, I think it would have been April, we were told that if you’re in a vulnerable group we could continue working from home. So, I managed, as I said, to do that between March and July of 2020. Before I went back to work, they did a risk assessment for me, and I think the changes they made at work was that no more than two people could be in the office and we had to be at least two metres apart, and we wore even PPE. And I think they did what they could for us to be able to continue working on site.

Unfortunately, which I only learned later, my colleague who I was sharing the office with contracted Covid. So, he was off work, and he had the test, and the test came back positive. And at the time I was feeling some of the ailments, but at the time – I keep saying at the time – but I didn’t, for a moment think that I would have had it. Then he told me that he had lost his sense of taste and smell, and it was almost like I was about four or five days behind him, so every new ailment he had I had the same ailment. So, I continued to work before I knew that I had Covid, and even that day I went to work for some reason I was feeling very fatigued, and even before I got to the train station I was really out of breath, but I still managed to get into work. But when my manager saw me, he said that I really should go home because I’m not well. So, I went home and ordered a home testing kit, and that came within a few days. And I got a call I think within about two days of sending in the test they said that I was positive.

Michael did not call an ambulance, because he felt others needed it more. His sister called one for him.

And so, your sister also called an ambulance for you; can you tell me more about how that happened?

Okay. So, as I said, I decided to try and…I was self-isolated and pretty much stayed in bed for that week after I’d known that I was positive. And I think me being very stubborn, I didn’t want to call the ambulance because I thought there’s more people out there that would need it. So, it was really the case of my sister said that if I didn’t phone the ambulance she would. And by the time I did need the ambulance I was so weak that I couldn’t speak or anything.

So, she managed to phone the ambulance, but she explained to them because she doesn’t live here it would be a case of they would have to somehow speak to me. So, I found I’d left the door open, and they managed to come in, and they tested my blood pressure, and I’m not sure if it was my blood oxygen at that time and deemed that they had to rush me immediately to hospital. And from thence, a kind of superficial thing, but I remember I had my phone in my hand and they said I might want to get a charger because the phone may go dead or something. So, I was consciously trying to go up the stairs to get the charger, and I just couldn’t. So, when I was in the hospital, and this phone, which was my one lifeline, and the battery was about to die, so it was kind of frustrating in that respect.

Michael did not remember anything from being ventilated. That a nurse prayed for him during that time made him realise how ill he had been.

I’ve got those maybe 11 days or so which I’m partly aware of but I’m not aware of. So really, it’s a case of me at the moment just having to rely on my sister’s memories. So, it’s almost like that period of my life is still very much unaccounted for.

Can you say a bit more about what that’s like? So, you have a period of time you don’t remember?

It’s, for me it was quite literally going to sleep and waking up two weeks later. It’s I know you can’t account for every day of your life, but sometimes, say something as major as this, it would be nice to be able to know what was happening.

I mean what was quite a shock to me as well, as I said, I didn’t have my phone all this time, and when I eventually got the phone all these messages were streaming in, and I wasn’t aware of the severity of, you know, it was at one point 50:50 chance of whether I would survive or not. So, to actually read those kind of things in the discharge summary, that I think is where that nurse I mentioned that played the music to me, he said that he prayed for me after seeing me. And to me that was…you’re kind of used to…not used to, but you would expect that somebody in that position would see a lot of people in that condition. But to think that I was suitably ill or whatever for him to feel that he had to pray for me, kind of meant a lot to me. And at work as well. I work at a Catholic school, and they had various masses for me, and I had a candle…[inaudible] …some notes, I think it’s a very sacred place, but I had a candle put there for me as well, and they prayed for me. So those kind of things are kind of special to me as well.

Michael’s nurse played him music that his sister had recommended for him.

I remember there was always music playing, and my sister told me that that’s the type of music I like, so she had given them a few ideas. So throughout most of my time there they would be playing music. Not sure if that was to – what’s the word – to keep me motivated or what, but there was always music playing. And it was a little shock by the time I went to the Covid ward, because it was pure silence. Nothing.

So, did you appreciate the music?

I think it did take my mind off the nothingness of the whole environment. Okay, if you can imagine you’re in a bed 24/7 and there’s nothing else there. You take for granted, you know, or I’d look on my tablet or pick up my phone, or what, but when you don’t even have the strength to be able to do that, you’ve got to find other things to kind of keep your mind occupied.

And did you say the music, that was the music that your sister picked out for you?

Yes. It wasn’t necessarily what I would normally listen to, but at least it was… (stops mid-sentence).

Did you recognise it?

I did recognise it. Yeah. Kind of Motown and music from the ‘70s, ’80s. So, it was definitely recognisable.

Michael did not want to spend any more time in hospital than was strictly necessary.

So, in that respect I think, rather than taking the baby steps I looked more towards taking as many steps as I could at one go. So, because of that probably my stay in the hospital wasn’t as long as at first they thought it would be. Because I remember even must have been at a week or so after I went in the Covid ward they had asked me if I wanted to go to another hospital for more…well, it’s not rehabilitation, but, you know, to get better. And to me that wasn’t something I would have considered doing.

Why not?

I don’t know, I just…after spending four weeks in the hospital I just wanted to go home. I mean I should be more familiar with hospitals because as a child I was very ill and did spend a lot of time in hospitals; so maybe that was stuck in my memory to the point that I didn’t want to spend any longer than I need to.

Michael’s sister shared with him on how to live with fatigue based on her experiences with fibromyalgia.

So, after I came out of hospital, I was given a walking stick and told that it would be best for me to use it because I still had a very poor sense of balance. So initially for the first few days I continued getting stronger and stronger, and everything I was told that would take months I was literally doing it within days.

And then after about two weeks things started to slow down and had started almost like I was backpedalling, I was getting worse and worse. And I would say it’s pretty much been the same for me since then. Some days, or even some weeks I’m making good progress, for example, I’m not sure if I’ve mentioned it when you had phoned me before, but I decided personally that I would just take myself away for a few days, and I booked into a local Premier Inn type of hotel.

And rather than it being a break for me, I actually got worse and spent most of my time just in bed trying to fight the fatigue. And by the time I got home my breathing got so bad that it was like I had Covid all over again, so I had to send away for a test. And thankfully it was negative.

So, as I said, some weeks, or even days, are good, and other times it’s almost like I’m back to the beginning again.

Is that something that you feel that people understand? Or is it hard for others to grasp?

As I said, my family understand. But I’m sure at some point I’m going to speak to somebody that will almost be convinced that it’s all in the mind and just get a plan to do some work for a change. I know my sister, she suffers from fibromyalgia and chronic fatigue, and that’s very close to the same symptoms as long Covid. So, she has been very helpful in being able to tell me what to expect and how to deal with those times when you’re very under the weather.

Michael’s recovery initially exceeded the expectations, but then stalled. He now has good days and bad days.

So after I came out of hospital I was given a walking stick and told that it would be best for me to use it because I still had a very poor sense of balance. So initially for the first few days I continued getting stronger and stronger, and everything I was told that would take months I was literally doing it within days.

And then after about two weeks things started to slow down and had started almost like I was backpedalling, I was getting worse and worse. And I would say it’s pretty much been the same for me since then. Some days, or even some weeks I’m making good progress, for example, I’m not sure if I’ve mentioned it when you had phoned me before, but I decided personally that I would just take myself away for a few days, and I booked into a local Premier Inn type of hotel.

And rather than it being a break for me, I actually got worse and spent most of my time just in bed trying to fight the fatigue. And by the time I got home my breathing got so bad that it was like I had Covid all over again, so I had to send away for a test. And thankfully it was negative.

So, as I said, some weeks, or even days, are good, and other times it’s almost like I’m back to the beginning again.

Thank you, Michael, for that. Do you just want to tell me a bit more about what those bad days are like?

Right. On a bad day, I think actually it quite amused me at the time, but it did sum things up. I decided to get this new app which would measure my sleeping and how much activities I had in a day. And the first time I used this app I’d just got out of bed and it said, you have achieved your goals for the day. And I think that pretty much summed up a bad day for me. The most I could do is kind of get out of bed, and then that was my goal for the day.

Thankfully I haven’t had many of those type of days, a normal day for me would be I try to force myself to go for a walk early in the morning, and after that I will try and do a few gentle tasks throughout the day, just to keep some normality to my day. But generally, I would say I’m at maybe 60 per cent of my normal level of health, and that’s on a particularly good day.

In the absence of a patient diary, Michael relies on his sister’s memories to account for the 11 days he does not recall.

So, your sister was in contact with the ICU staff at the time?

She was. Yes. Now unfortunately I know they do diaries in the ICU, they weren’t able to send me my diary, so I haven’t got any more kind of…from my understanding it is quite detailed and [inaudible] focused and things. I haven’t had that.

Do you know why they weren’t able to give it to you?

At the time I spoke on the phone they said something about hygiene, something, I think it was paper based and they were reluctant to send out something paper based in case of the – they would have contamination.

So, is it likely you might get it at a later stage?

I don’t know. I suppose under normal circumstances I would have got it, but because everything is so up in the air now, I’m not really holding out much hope. It would be good if I could get it.

What would it do for you to read it?

I think it would…as I said, I’ve got those maybe 11 days or so which I’m partly aware of but I’m not aware of. So really, it’s a case of me at the moment just having to rely on my sister’s memories. So, it’s almost like that period of my life is still very much unaccounted for.