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Experiences of Covid-19 and Intensive Care

Doing the work of recovery

Recovery from ICU (Intensive Care Unit) is a long process that can take months or even years (see also ‘Physical recovery from Intensive Care'). Some people we interviewed had recovered within months after coming home. For others, recovery was a more drawn-out and ongoing process. The speed of recovery depended in part on how severely ill they had been, other conditions they had, and whether they had been mechanically ventilated and proned.

On this page people talk about their experiences with:

The everyday work of physical rehabilitation

How far people recover can vary. Some people we spoke to made a full recovery. Others sustained lasting damage from their Covid infection and had not regained the functional and cognitive abilities they had before.

Common impairments for patients who have been in ICU include muscle weakness and muscle wastage, reduced exercise tolerance, breathlessness (with or without exertion), and fatigue. Some patients sustained injuries, such as shoulder problems, nerve damage or pressure sores from being proned.

Delirium can lead to cognitive impairments. Patients commonly experienced significant psychological issues from the dreams and hallucinations they had whilst in hospital, and from having witnessed the experiences, distress, suffering and deaths of patients around them.

Critical illness takes its toll on the body. This, coupled with lying in a bed without moving for an extended period of time, leads to substantial muscle mass loss and wastage, and general physical weakness, recognised as part of post-intensive care syndrome (PICS). Interventions also impacted on recovery. Those who have been ventilated or have suffered infections in addition to Covid can have physical impairments that need time to heal. Patients and family members described their determination to physically recover, with and without professional support (see also ‘Sources of support after coming out of hospital’).

For many, seeing how their body had changed during their illness felt they were no longer the same person, or had lost the person they were before.

 

Dana’s husband found it difficult to have a different body to the one he had before his coma; with the help of a private physiotherapist he worked hard to regain his physical strength.

Dana’s husband found it difficult to have a different body to the one he had before his coma; with the help of a private physiotherapist he worked hard to regain his physical strength.

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Yes, and gradually over time he’s got better, slowly, slowly, he was only offered one session of physiotherapy, but we ended up getting private physiotherapy, so he’s been doing physiotherapy on zoom weekly and that’s been a real source of strength for him is that he’s enjoyed having that person every week who’s seen him develop and who has given him advice and who has listened. So, she’s been amazing, and he’s worked really hard in rebuilding his strength because he was very strong before and it was really hard for him to have the strange body that was totally different from the body he went to sleep with. He's worked really hard at his physical strength; I think the nausea and the feeling unwell has been really challenging for him and it comes and goes as part of the fatigue, and he still has elements of that and that is…I think everything has been about time. So, gradually, gradually, gradually everything has got better, and we are aware of how extraordinary his recovery has been considering how ill he really…he was at that time, and they said that to us when he was discharged from the Covid clinic in December, and they said that he really has made an extraordinary recovery.

But he’s still not 100 per cent himself and he’s still struggling with elements of Covid symptoms and fatigue, nausea, headaches, body ache, all those symptoms that nobody really knows the answer to and that’s frustrating for him and still part of it. So, he’s not back to normal yet but he’s a lot closer than he was when he came home.

 

Peter’s hospitalisation took an emotional toll on Stephanie. She needed time to come to terms with ‘losing the old Peter’ and their life together as it was.

Peter’s hospitalisation took an emotional toll on Stephanie. She needed time to come to terms with ‘losing the old Peter’ and their life together as it was.

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I think even after he came home it was, felt like Peter psychologically, I mean I’d read about all the psychological effects, after effects that Covid can have on patients so I was sort of like expecting him to be, you know, quite down and depressed and frustrated I think and angry but he hasn’t been he’s been absolutely fabulous, you know, he’s just taken everything in his stride. But me, who is normally a really tough cookie and so emotionally and mentally stable, I was just a mess and I was almost, I almost had sort of what I would probably compare to a post-traumatic stress disorder, after I would cry at anything, you know, as soon as I saw anything on television that was anything to do with Covid I’d start crying and sometimes I’d just look at Peter and cry and that is not me, you know, I’m normally so tough but it absolutely destroyed me really but I’m, I’m getting better now but I’m still quite emotional about the whole thing. Because, you know, in a way I mean I know although there’s no guarantee I’m hoping that I will get the old Peter back at some stage in terms of, you know, I mean he’s back with me mentally and physically, you know, as well and but they didn’t guarantee us that I’ve accepted that I’m just, you know, we’re both just hope that in time he will be as strong as he used to be able to do the things he used to be able to do. But it’s also been a sort of a bit of a breathing process for me losing the old Peter and everything that our life was together because obviously the things, our life now is more [inaudible] than it used to be, you know, in many ways, I mean just things like, you know, people were saying to us oh are you gonna go for a honeymoon and we weren’t particularly avid holiday makers anyway but never the less, you know, I don’t think Peter at this stage could manage to go on holiday because, you know, he just gets tired easily and, you know, breathless and I think it would be too much, so it’s just little things like that, you know.

People described setting themselves targets to increase their physical abilities and fitness. Many approached everyday tasks as a form of exercise and soon saw daily improvements. However, doing the work of recovery was not always easy or possible, due to fatigue, pain, lack of motivation and newly acquired disabilities.

During her time in ICU with Covid, Caroline lost both her arms and feet due to sepsis (a life-threatening reaction to an infection). She spent 11 weeks rehabilitating in a specialist amputee centre where she “learned to walk again, was given prosthetic legs, prosthetic arms, [and was] taught various life skills.”

 

Caroline treated everything in rehabilitation as an opportunity to improve, and to learn how to do things again.

Caroline treated everything in rehabilitation as an opportunity to improve, and to learn how to do things again.

Age at interview: 58
Sex: Female
Age at diagnosis: 57
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But I treated all of my time in rehab as rehab. So all the time I was on the ward, I was trying to do things, so things like making a cup of tea but also doing my washing and making my bed. Once I cottoned onto the fact that beds were changed on a particular day, I used to say to the nurse, right, I’ll strip the bed, because I could do that with my stumps. And then for the last three or four weeks, I would make my bed myself. And it might take me two or three hours but I would do it and I’d be blooming proud of having done it. And I said, but I’m going to want to do this at home, so I might as well practice now.

And it was all like that. You know, we had a gardening group and I’d go out and try and do a bit of gardening and find out which bits could I do and which bits couldn’t I do, yet. And it was really good. And we…a group of us decided we wanted to sand down some of the benches because they were in a sorry state. So we got permission and they got us some sandpaper and some sandpaper blocks and I managed to sand, you know, with my stumps. I put a sock on because otherwise it hurt my stump and I sanded parts of the bench. Yeah, and it was all things like that that you could do that I did do because I wanted to and I wanted to improve.

 

Wendy found it hard to motivate herself for exercises, but tried to do them anyway.

Wendy found it hard to motivate herself for exercises, but tried to do them anyway.

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So, compared to when you came out of the hospital how do you feel now?

Oh heaps better, heaps better, yeah. And my problem is, I want to be like I was pre- Covid and I’m not quite. And my nurse, she…I won’t use the expletive that she used, but we had a conversation a little while back and I phoned her and I was moaning and groaning like, you know, blargh. And I said to her, I said, ah you know, I’m just so fed up, nothing’s happening as quickly as I want it to. She said, Wendy, you have just got to be… And I went, please don’t say patient because I don’t do being patient, I just want to be better. And she said, you don’t do being patient? She said, you’re absolutely rubbish at it, she said, but that’s what it’s going to take. She said, it is a slow process but you will get there. She said, you of all people will get there, she said, because you’re determined to.

So, I make sure I walk at least once a day if not twice a day. I’ve got some exercises to do which I… I’m not very motivated on the exercises. I do want to do them; in my head, oh yeah, yeah, yeah, and then something will happen and I get distracted. But I’ve got in my phone now a reminder, Exercises, so I shall be doing those, yeah.

So, do you feel you’re back to the same level of health as you were?

No, nowhere near, nowhere near, no. And that I find really frustrating because in my head I’m thinking, right, go and do this, go and do that. And then when I come to physically do it, I’m just shattered, I just get so tired so quickly. So, like yesterday I thought, oh I’ll do a bit of hovering, and I did the hoovering and I had to sit down for ten minutes, you know. So, which in some ways if I’m having a bad day with the ILD I would have to do that anyway, but no, I’m not…no, not yet. And the brain fog is still there and I hate that, absolutely hate it. So, I’m doing Scrabble and I’m doing all sorts of stuff to try and get the grey matter going, yeah.

Jenny, who uses a wheelchair, found she tired quickly. She tried to do things like knitting and keeping her mind active.

 

Jenny found it frustrating that she got tired quickly but tried to do small things and stay positive.

Jenny found it frustrating that she got tired quickly but tried to do small things and stay positive.

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What has life been like for you since you got home?

Frustrating because I can’t do things I want to do. I get tired quickly. Like I said, I’m wheelchair-bound anyway because I’ve got severe osteoarthritis and one leg I’ve got a metal pole from my hip to my ankle, so I can’t bend that. But I can potter around and do things, but I try to do simple things, you bend down to do something and, oh, you’re out of breath again.

And it’s just frustrating. So, I’ve sat and done a lot of knitting. Having things to do, like I like doing crossword puzzles and I used to hate doing word search. But while I was in hospital, having word search to do, you didn’t have to think too hard about it, but it takes your mind…I think if I didn’t have things to do, I would have gone mad, I think. I lent a man my tablet so he could watch some films because he had nothing to do, so…and I was knitting and doing the word search. And it’s just, keep yourself positive really, trying to have positive thoughts and keeping your mind active. Otherwise, you just lay there and think about what’s wrong with you and I don’t think that helps. So yeah.

And now they just tell me it’s time, they say it can take five years before you’re totally over it. But I’ll just take each day as it comes and do what I can do and what I can’t do, I’ll have to leave ‘til tomorrow. So yeah, it’s getting better. So, each day is a new day and you improve each day. Some days you think you’ve gone 10 paces forward and nine back but then other days you think you’ve gone 10 and stayed at 10, so yeah.

It’s hard work recovering?

It is. And my husband, he’s still tired, you know, he said he’s exhausted. He does a bit in the garden and he’s coming back in and sitting down and falling asleep a lot more. Yeah.

Several people devised additional activities and targets for themselves to increase what they could physically do. Professionals who support and guide rehabilitation see goal setting as important. Patients are encouraged to set their own goals, and to break these down into manageable chunks to help motivation, and to aid recovery.

 

Roger kept a list of his steps, mapping out his progress.

Roger kept a list of his steps, mapping out his progress.

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So, I was wondering if you could tell me how have you been getting on, since you got home from hospital?

Okay. I have a list here, that I didn’t…I started on the 28th December. I don’t think I was particularly well when I got home and I was having to do everything in slow motion, just to accomplish simple tasks. I do remember though, it took me…I had to stop six times, walking up the stairs, just to catch my breath. That wasn’t… a great time. And I do remember thinking, oh, I’ll be right for Christmas. Not really. Still not right yet.

So, towards the end of December, I started to keep a…a bit of a list about my walking. Now, from the…my kitchen to the front door, is 15 metres. And I thought, well, I’ll do that, and then at least I’m building up my muscles again. And well, the first few days, I was doing about 600 metres, dropped down to 300, and…which I’d been feeling it’s too much. Dropped down 150. So I did 150 for about three weeks. And then I decide to go out of the front door, duh, der. And at the end of my walk, which is only about 50 yards or so, there’s a little lane [name]. Right, so that’s my aim. And it’s uphill, slight gradient. So, yes, I do that, have a little rest and walk back down the hill to the house again. That’s fine. And according to my list, I did that for a month without going any further. And then I gradually increased it, increased it, until mid-April, I’m actually walking two miles, a mile, and then a mile back.

 

Recovery for Johnny meant eating well and doing light exercises, supported by his wife, a zimmer frame and sometimes a physiotherapist. Eventually he could walk alone.

Recovery for Johnny meant eating well and doing light exercises, supported by his wife, a zimmer frame and sometimes a physiotherapist. Eventually he could walk alone.

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So, when the doctors finally said I can go home and continue my rehab at home I’m glad because I’m like a very thin person because my nutrition is very poor. I don’t like the hospital food. Only a small amount I can eat. So, when I get home, I eat as much as I can in my own food, with my own food, native food. So, I gain… When they discharged me, my wife said I’m like paper, I’m like a puppet, they had to carry me. Two people carrying me to my flat.

And then from there there is a zimmer frame, but I just cling to the wall because I don’t like using the zimmer frame. So, when I’m finally at home I can breathe well. Then day by day I am trying to gain my strength and I’m trying to inhale as much as I can and do some light exercise, and my wife is always with me because she also got the Covid but she’s asymptomatic, and she also ask her employer if she can take the off sick because she’s positive. So, she look after me for over a month, and attending to all my needs, and eventually I am gaining strength. I can now stand, and I can move around, but I don’t use the wheelchair…the zimmer frame.

And then a little bit into that, maybe around a month, I can go outside. My wife, she stood me in the gym. We had the aerial gym outside. And then walk around and then inhale fresh air from the park. Then the physio who is also coming to the communal area she assisted me in all those exercises. And then when she’s done, she just gave me some papers with drawings so I can do some exercise on my own, and I was able to do all of them anyway. But my main concern is how to walk independently without the frame. I eventually managed to do that, but I thought I’m very confident that I can walk already.

Laurence turned his exercise regime into a fundraising opportunity for the NHS. He trained to cycle 100 miles to raise money for iPads for the ICU, because video calling had been very significant to his mental wellbeing when he was in intensive care.

 

After waking up from being ventilated, Laurence could FaceTime his family, which was a real morale booster for him and his family.

After waking up from being ventilated, Laurence could FaceTime his family, which was a real morale booster for him and his family.

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Then when you did speak to your wife for the first time, so you mentioned you didn’t have a voice yet, so it was… So, what did that whole situation look like? So, they brought an iPad, you said.

Yes, they brought an iPad. I couldn’t use my… so incomprehensible for me, I couldn’t use my phone because it was too cumbersome. It’s not a massive phone. It’s the new iPhone 11 so it’s quite chunky but I just wasn’t able to physically operate it; a) I couldn’t’t speak, b) I couldn’t’t hold it up and I couldn’t’t do the numbers. I wasn’t very… I guess I wasn’t very with it, I suppose. So, yes, that first time the nurse would hold it up like that and just there, it’s my wife and she would be talking to me because she knew I couldn’t’t talk. They’d obviously given her a bit of a pre-chat to say, look, you know, he can’t talk but he’s just been doing this, that and the other and he’s awake, he’s kind of with it so talk to him and encourage him, which is what she did. So, she was just sort of saying, you’re doing fantastically well and your daughter’s here with you… me and here's the dog and it’s lovely and sunny. We’re fine. We’re waiting for you, and all that sort of stuff.

So, all conversations, I think, were aimed at giving me hope to just get better and, yes, they were a real morale booster for me, and I think that’s a brilliant idea if, in the entire ward, in a situation where you cannot have your family or friends. I think if I’d been involved in a motorcycle accident or something or, you know, I’m sure that in a normal situation you’d be able to be beside your partner, holding their hand, without being covered in PPE… you know, all that gear and it would help. There's a connection there, isn’t there? So, this is very new for the nurses and the doctors and for the patients and for the husbands and wives and families at home that are not able to come and see you or drop stuff off for you. So that’s where I got that sense that I felt that the nurses might be struggling with that because they can’t… they must feel that they’re not doing their job to the full extent of their ability.

Yes, so that was one of the reasons that we wanted to raise some cash to buy more iPads because I know that the priority for cash must be to go to more equipment for essential things so that’s part of the fundraising that we’re doing is to try and buy iPads but also to make sure that we push up the agenda that mental health aspect.

Managing one’s own expectations

Recovery is rarely smooth and steady. Instead, processes of recovery are punctuated with ups and downs, one step forward and one step back. The setbacks can lead to sadness, frustrations and worry. All these feelings are normal.

 

Victor had days on which he felt sad. He sat in the garden in the beautiful weather of the first lockdown for a few days. Then he slowly began to set himself goals.

Victor had days on which he felt sad. He sat in the garden in the beautiful weather of the first lockdown for a few days. Then he slowly began to set himself goals.

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Paula: The day that he had a little bit of a blip here, little bit of...

Victor: Little snivel.

Paula: Little sad...

Victor: Feeling sorry for myself.

Paula: Yeah. I said to him...It was a lovely day. It was like this. And I said come on, I said, come and sit out in the garden. Just sitting out in the garden just made such a difference to him and getting the sun on his face. And then he had a couple of days of sitting outside and then he said oh, I’m going to cut the grass. I said I’ll do it, no I’ll cut it. And he did two lengths and said down, had to have a rest, did two lengths, sat down...

Victor: I love cutting the grass.

Paula: So, it was...he did his own therapy, really.

Victor: But even with getting back to walking, I was quite sensible then, wasn’t I?

Paula: Yeah.

Victor: We would do, initially, as Paula said earlier, a few lengths of the garden, with the frame. Then with...

Paula: Crutches.

Victor:...crutches and then walking with crutches, but just holding them in the air, so my legs were doing all the work. Then we progressed from that to walking up the road. Then I had this ambition of getting somewhere near the walks that we do with  Sky [dog] in the forest, because they’re beautiful walks. And, yeah, I progressed that way.

And I was like, if you’re into your fitness, like you probably know, you get... I don’t...I’m not sure of the medical term but when you experience that euphoria you release endorphins, that sort of thing. I was experiencing all that again, even though I was only doing a fraction of what I was used to. But I was getting there. I knew I was getting there. As long as I was sensible. As long as I didn’t do too much to send me back a few stages. So, for once in my 62 years, I was sensible. Yeah. Yes, that was good. Yeah. But as I say, for quite some time I haven’t even felt unwell. I don’t feel unwell now, it’s just these symptoms that I’ve got.

 

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

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

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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.

People we spoke to had to manage their own expectations and anxieties in the face of their unpredictable and slow progress. Professionals emphasised the need to be patient. Michael said that the most helpful advice he had been given is “to take things slowly and, you know, if I’m not up to a hundred per cent or what, it’s not the worst thing in the world, almost you know, take life a day at a time. [...] it will be baby steps.” Yet, taking small steps was not easy, and some had to find their limits before they believed it was going to be necessary.

 

Jo felt that she had control over her breathing and used it to calm herself down.

Jo felt that she had control over her breathing and used it to calm herself down.

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And, you know, one of the things that I found, I do have anxiety and I’ve done quite a lot of CBT where I’ve managed to overcome things that make me anxious. And one of the things that I do is, if it’s not in my control, stop worrying about it. Because that is the thing, that if it’s not in your control, then you need to just worry about things you can do stuff about.

And so, breathing is something I can do stuff about, but I just need to wait for my heartrate to drop. Because there’s no point in trying to do breathing, normal breathing while your heartrate is heading towards 130 because that’s just not going to work. So, you know, that whole kind of trying to get your breathing under control, it’s really a mental fight rather than a physical one for me. I’m guessing for anyone really.

And I think that’s the thing that I…that’s my biggest take-away from this whole situation is, you know, that I rely on myself to achieve improvements in my health and my stamina. But also, I am the solution to…you know, I can either decide to pant and breathe through my mouth or not, as the case may be.

 

Victor learned the hard way that he had to be patient with how much physical activity he could do.

Victor learned the hard way that he had to be patient with how much physical activity he could do.

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Victor: There was an obvious path of improvement that I was driven to achieve, and I had this comment from one of the doctors ringing in my ears and it meant I had to be sensible. One of the doctors said, Mr [last name], your biggest problem is going to be one of patience, I’m trying to run before I can walk. So, I thought you’ve got to be sensible here, but I did push myself too much on one or two occasions and knocked me back a couple of days.

Paula: We had your bike down here, didn’t we, we bought the exercise bike down and the first day he got on it, he wanted to do what he used to do, and he nearly fell off…

Victor: Yes, after about 20 seconds, this bike, I would do four or five miles on the resistance level of 14. I don’t know what entered my mind, I said to Paula, I’m going to have a go on the bike, so as Paula said, we moved it down here and I got on the bike, straight up to level 14, I nearly fell off after about 20 seconds. So, I thought, you aren’t being sensible here.

Paula: I said, you’ve got to start from level one, I said and just do, even if it’s a minute, 30 seconds and then you build yourself up which is what you did…

Victor: So, I’m now back up to what I was before, took me ten or eleven weeks but that was good. Perhaps it was because I used to like a bit of fitness before, I’ve always been fit but I’ve never been like a strong man, I’ve never had any upper body strength but always had good legs. I could run, I could cycle, even literally two or three weeks before I was taken ill…

Paula: It was just before Christmas, wasn’t it, you went up there.

Victor: Two or three weeks before I was taken ill, I got on my mountain bike and cycled about 40 miles, that’s hard on the road, I don’t know if you know, to use a mountain bike on road is quite hard work. I went to see my brother-in-law and then my other brother-in-law, in Canada, he is a strong man and he’s very fit. He said to me on the phone, is that right, you cycled up to [name friend], he’s scratching his head, he didn’t know how I did it. Then a few weeks later, I was ill.

So, I was always a fit man but as I say, not strong but I think I’ve got a strong heart and I think that helped my recovery as well. I think it did, I don’t know but the main contributing factor, for my recovery, was Paula and Rob [son] and the NHS. If I didn’t have those three things, I honestly don’t think I’d be here.

Mark was discharged from the ward into a rehabilitation unit, as he had requested.

 

Mark insisted on going to rehabilitation so that he could recover the strength he needed to care for his elderly mother. In rehab, he wanted to be pushed to exercise, and found it hard to take things slowly.

Mark insisted on going to rehabilitation so that he could recover the strength he needed to care for his elderly mother. In rehab, he wanted to be pushed to exercise, and found it hard to take things slowly.

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My consultant was very calm, and she said, as far as we’re concerned, [name], you should go to rehab. Whatever you…if you don’t want to go home with physio, that’s fine. I said, I’m looking for all-round fitness, I’m not just looking for fitness and to be able to use the facilities in my home, I’m looking to be…for all-round fitness, I know what I want.

And so, it did mean an extra probably three to four days on a normal ward before a bed came up in a local rehab unit and I was transferred to that. There I was given physio. Well, I hung out for this rehab unit on the basis that if I went there, I was going to get rehab three times a day. And the reasons that the rehab team in the local hospital wanted to send me home because they said, well, you’re on an upward curve and you’re just going to get stronger and better. You know, you’ve already started to walk the length of the ward with a frame.

Sorry, that was another thing that shocked me I haven’t mentioned. I was quite surprised that after having Covid and being in a coma for three weeks, that I came out unable to walk. I had to learn to walk and talk again. And yeah, that’s why we had the rehab was to try to get me to walk again. So, I made some very good strides learning to walk.

And then when they transferred me over to the rehab, it wasn’t as expected. I was quite lucky if I got 10 minutes of rehab a day. I seemed to progress well in that 10 minutes with the stretching exercises that you had to do. And this particular person he’ll walk me along the corridor, turn around and walk me back to my room. And that was the end of rehab until the next day.

Then we had a change of staff member over the weekend. And she was absolutely brilliant. She pushed me. She said, oh, okay, so you’ve got the frame, [name]. Yeah. You can walk to the end of hall. Well, let’s walk round the dining hall. So, we walked round the dining hall. And I was about to turn in and she said, no, keep going. No, keep going. Oh, okay. So, I kept going. Got to the end. Oh, well, you can keep going a bit further. Oh, okay. Right, now you can come back. Fine. I felt brilliant. That felt like a physio session. That’s what I came here for, to be pushed. Oh, okay. A lot of people don’t like to be pushed [name]. What you on about? I said, a lot of people don’t like to be pushed. No, that’s what I’ve come here for. I’ve fought for this to come here to be pushed, I’m sitting down here just getting 10 minutes and 23 hours and 50 minutes I’m sitting here twiddling my thumbs. It’s more like old-fashioned convalescence as opposed to rehab, in all honesty.

And I’m thinking, but can we go again? No, you need to pace yourself. Okay. But if he wasn’t on duty, someone else will say, go on, you can go again. And that just felt better. But they’ll go, but you’re tired. And I’ll go, but I understand what you mean where you’ve pushed me to capacity when he’s…I do understand what he means. Don’t push yourself that you’re overtired and then you can’t do another session. But I hadn’t hit that point to feel that point, to appreciate what he was saying. The others allowed me to hit that point where I’ve gone, ah, I get it. And I suppose not all patients are the same. And I was also trying to say, trust me, I’m not going to fall down on you or collapse in a heap where you’ve got to, you know, get colleagues in to lift me back to bed and cart me off sort of thing. I’m not going to do that to you. We’re not going to get into that sort of situation, trust me. And yeah, so I did understand what he said but there was a little bit more.

So, I came home. I had some equipment from the bathroom. My daughter put a washbasin, she reconfigured my bedroom. And yeah, I was self-sufficient. My daughter stayed with me for about few weeks, although she threatened not to be here when I came home. Because she came down from [up north], as far as she’s concerned, she’s done enough. “There’s two of us, get your son to do some of the work. Or get my brother.” So yeah, she stayed here for three weeks.

When recovery was slow, people worried about whether they would ever get better or if the limits of their recovery had been reached.

 

Roger does not know to what extent he can expect to recover, or even retain his abilities in the face of his advancing age.

Roger does not know to what extent he can expect to recover, or even retain his abilities in the face of his advancing age.

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So, you said you are unlikely to feel again, like you did when you were 40. How do you make sense of…what of your process is recovery from intensive care, what is recovery from Covid, what is ageing? How do you make sense of it, also in terms of what you might be able to change?

I think the best thing to do about recovering from Covid, is not think about it, because it’s kind of depressing. So yeah, I think, maybe the getting older bit, not a lot you can do about that. You just keep active. [Wife] and I used to go out on long walks in the [place] and things. But as I’ve slowed down, I can’t do that. [Wife] is a furious walker. She speed walks everywhere. So she was out on a…she went for a walk at eight o’clock this morning, before it got too hot. So she’ll walk every day and…two or three miles. That’s strenuous as well, there’s some steep hills in [place], which I don’t even…I think twice, before I drive up them sometimes. But I…

It strikes me as such a difficult thing to determine, whether it’s just age and, you know, we all get older, and that’s not something we’re going to change. But recovery is a process that we hope to reverse to some extent, so…

Sure. Yeah, absolutely. I think, basically, I’ve done a lot of that in my walking regime. So a lot…I think, well, I had a lot of muscle wastage. I’ve lost a stone and a half in weight. I’ve no idea what that is in kilos. And just gradually improved. But yeah, well, I think it’s something I have to keep up. Because as [wife] says, use it or lose it, you know. But I don’t fancy going out walking in this weather. So, I’m quite happy pottering in the garden and sitting under the umbrella. Yeah, I don’t know how…yeah, my recovery, I feel as though I’ve…I’m a lot better than I was, which is why I’m saying about 80 per cent. I reckon I was about 30 per cent when I came home.

So that’s been kind of improving. But how much better I’ll get, I don’t know.

Mobilising devices and pets for recovery

Many people measured their activities and improvements closely. Some used simple methods; keeping a daily diary; walking a little further each day. Others used oximeters to check their oxygen levels, which allowed them to gauge whether they were improving.

 

Chris used an oximeter to find out if he improved.

Chris used an oximeter to find out if he improved.

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But I am probably sleeping better, I’m probably sleeping longer than I did before I had Covid, whether this is just my body recovering still, or I know I actually just need to sleep for, I think, my respiratory appointment told me I’m sleeping for nine hours a night now, which some nights before I was probably sleeping five hours, if that. So apart from sleeping more, physically I do feel I am getting better. Even since I’ve been home, the first couple of days you struggle to get in and out of a shower; in a few weeks, a couple of weeks, I was able to sing in the shower; so, you know it’s, now got easier to breathe, you’re now breathing easier. I can now walk up and down the stairs. I can now, every now and again the stairs might still catch you out, I might get to the top and be like, oh, hang on a minute, that’s a bit tight.

And even for the first while, I found…I’d got myself one of the oxi things on my finger, and I was checking that all the time and, yeah, just watching that get better and better each day, and when I do walk the stairs, I would put it on and find out that it I was getting better, I was able to lose less oxygen and I was able to keep my heart rate lower. Day over day I can feel myself physically getting stronger as well, as in because my job is quite physical, of lifting, I can now feel I can lift more. I know not to do too much…

 

Brian initially walked small distances. Later he did some work outside the home as a form of rehabilitation. He used an oximeter to check his oxygen levels and “work out his parameters”.

Brian initially walked small distances. Later he did some work outside the home as a form of rehabilitation. He used an oximeter to check his oxygen levels and “work out his parameters”.

Age at interview: 55
Sex: Male
Age at diagnosis: 55
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It took me, while I was at home, it took me a couple of weeks, probably two and a half weeks of just taking it real, really easy and just trying not to push it. At about three weeks I just started to get up and thought, well, I’ll start by walking the dog. So, there’s a field at the back of us, it’s got a little bit of an incline, the walk would probably be two miles, and so I started to walk that dog real slow, real, really slow. As soon as I was going up a slight incline I would have to stop, so throughout the walk there were a couple of slight inclines, and I would just be pulling up oximeter looking at it and it would just be dropping like a stone.

I remember one day walking around that very field and I looked behind me, because my dog was, sort of, looking to see if there were any other dogs coming in, and I saw an old man walk into the field right in the distance. And I was walking so slow that he caught up with me, which I remember thinking, wow, I’m going that slow. But I just kept on, every day just walking in the fresh air.

So, today is just getting into the seventh week of me being out of hospital, at week three, week four I’ve been working around outside every day. I look at it as a rehabilitation, so I’ve been probably doing way more than some of the doctors probably would like me to be doing. But I’ve been, sort of, a busy boy doing stuff around my house, on the roof, which is part of my nature, just things that needed doing, changing fence post, digging concrete out, you know, dealing with tons of aggregate, shovelling out of bags. And then, just working out where my parameters were, oximeter in my pocket, watching the levels just drop, so I’ve just been…

Rehabilitation is rehabilitation, I’m not one of these ninnies that are just going to sit looking outside a window. rehabilitation, it doesn’t matter what shape or form, is tough, so you best just get on with it, and so I’ve just been doing that. And so, each week I can say that I can definitely see an improvement, if I come up…so, when I come up in the stairs in this interview you notice that I was just short of breath, and ever since then I’ve been talking fine. If I go for a walk with the dog and the phone goes and I’m walking and talking I will get breathless.

Some found taking their dog for a little walk helpful in their recovery. It helped them set goals, and encouraged them to go out when they did not feel like it. Victor said: “I had this ambition of getting somewhere near the walks that we do with [our dog] Skye in the forest, because they’re beautiful walks. And, yeah, I progressed that way.” Gerry said having a dog encouraged him to go out. Whilst stairs had initially been challenging, he felt that these too contributed to his recovery.

 

Gerry thought his recovery was probably sped up by the stairs in his house and the walks with his dog.

Gerry thought his recovery was probably sped up by the stairs in his house and the walks with his dog.

Age at interview: 57
Sex: Male
Age at diagnosis: 57
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Initially the first couple of months it was quite tiring. Just the fatigue. Not so much sleeping, but just aches and pains. I’d say the lack of strength was another one. Eventually when the taste left it was fine, I could go back to normal. That probably took a couple of months for the taste to come back. They sent a physio out to me. Physio asked me to do a test. Because we live in a town house with stairs they reckon the stairs have helped because I’ve been up and down. So the stairs have contributed to a good factor and getting my fitness levels back. So when they did all the tests he said, Gerry, I shouldn’t even be here. You’re fine, there’s no issue at all. So there was no problem.

My son plays football quite a lot, so I took him down the park earlier to kick the ball about. I’m trying to be as active as possible. I got myself an Apple Watch, I’ve got my oxygen levels on it, I check my things, I go out and do my walks when I can, and obviously the puppy, on 1 March we can take her outside, and then that’s going to contribute more. So albeit the puppy was for the kids, but it will also be for me to get her out and to get walking, which is good. Sometimes it’s hard to motivate yourself to get out of the house. It’s so easy to sit on your couch and watch Netflix and various other things, but I feel that having the puppy it’ll be better to get out. I’ve got more encouragement.

While some felt they were not doing rehabilitation unless they were physically exercising, others fully embraced the idea that recovery was a long process of coming to terms with what had happened (see ‘Coming to terms with what happened and long term effects’).

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