Neil
Neil developed symptoms at the end of March 2020. He spent 18 days in the intensive care unit, and a further 5 weeks recovering on the acute medical and general wards. Neil has found his time in hospital the ‘the most life changing months [he] ever had’. Interviewed for the study in October 2021.
Neil works as a manufacturing team leader. He lives in a flat share with a friend. Ethnicity: White British.
More about me...
Onset/symptoms
When Neil first started coughing in March 2020, he called his employer to say he probably needed to self-isolate. They were helpful and agreed that he would be in touch when he was feeling better. As the cough got worse, Neil’s flatmate got more and more concerned, and eventually suggested calling the doctor. Neil spoke to 111, who suggested he call his GP. The secretary at the GP suggested he phone an ambulance if his symptoms got worse. When Neil coughed up a bit of blood, he felt it was time to phone an ambulance. The ambulance arrived within minutes, and the paramedics took him to hospital.
Admission to hospital
In hospital all staff was geared up in ‘space suits’. Neil was initially on a ward with non-Covid patients where he was to be medically assessed. He could overhear staff saying his name and wondered why they were not telling him straight away what was wrong. He was eventually moved to another ward, and then another, and eventually ended up in a side room. He retained the feeling that this particular ward ‘did not really want him there’.
Based on the experience of his mother’s death about 8 years ago, Neil spoke quite frankly to doctors about that they should do what they felt was best for him and his survival, even if this meant intubation. After that he feels that he “started to lose time”. Neil was subsequently mechanically intubated for two weeks.
When Neil was in induced coma his kidneys failed and he was put on a dialysis machine. As it was early in the pandemic in 2020, medications for Covid had not yet been found and so doctors trialled various drugs. Neil knows he was proned, although he does not actively remember this. When being weaned off the ventilator, Neil started to have hallucinations. Neil describes himself as lucky, as his hallucinations were mostly ‘not too violent, and in part even fairly funny’.
When Neil awoke, he thought he was in Scotland, perhaps due to the accent of a Scottish nurse who had been taken care of him. Initially he could not put a face to anybody in the ICU, and thought they looked like people from work.
In the High Dependency Unit and general ward
He quickly improved, which meant that he could be moved to the high dependency unit (HDU). At that time many patients were dying, so his moving to HDU was important step for both Neil and the staff. Neil had to ‘learn to be a human being again: to walk, to talk’; he had physiotherapy every day. He found the staff brilliant. Unfortunately, a secondary infection meant that his rapid recovery was set back, which was difficult to come to terms with at the time. The nurses and doctors supported him through, encouraging him and telling him he would get better. Neil then spent 5 weeks on the regular ward.
At home
After coming home, he received physiotherapy. These sessions ran from April- November 2020 and were one of the most helpful things for his recovery. It was quite emotional when they stopped, as they had been such a big part of Neil’s journey towards full recovery.
Neil furthermore participated in an online support group. He found this tremendously helpful as a form of bonding and moral support. The group helped him to feel less isolated, to realise that he was not the only one who had specific problems, that everyone had bad days. He was told by others that they saw him as an inspiration of where they could get to with their recovery.
Neil’s time in hospital with Covid have been ‘the most life changing months [he] ever had’: he values life more, values friendships more, he is less materialistic and now sees work as a means to live, rather than the reverse.
Before he fell ill with Covid, Neil dismissed the chance that he could fall ill with the virus.
Before he fell ill with Covid, Neil dismissed the chance that he could fall ill with the virus.
So, do you remember when you first heard about Covid and what your thoughts were then, because you were ill quite early on in the pandemic, no?
Yeah, I… when we first all heard about it, I said…I was quite blasé and non-accepting of how bad it was going to be. I said, it’s just like the cold flu, people die of the flu every year, it’s just the same as that. It’s not going to be anything different; it’s not going to be…it won’t kill as many people as die of flu. So, I was very dismissive of it. Boy was I wrong, boy was I wrong. I know now how bad it is, obviously, and I know that it is…it’s such a bad virus that it can just touch your body and basically wants to kill you. So yeah, I was pretty wrong with that one.
So, when you say you were quite blasé and dismissive, does that mean…did you not have any particular worries about you or anyone around you, is that right?
Yeah, I didn’t think I was going to catch it, I didn’t think anybody I knew would catch it. I just thought, yeah if you get a cold, you get a cold. Yeah, so that’s exactly how I thought about it.
And then what did you know about Covid when you developed that cough that you mentioned?
Well, I just knew that…they said at the time the symptoms were if you’ve got a really bad cough… I also lost sense of smell and taste, so I thought I pretty much may’ve had it. And that’s why I did say to work, I think I need to self-isolate, but I did say, I feel like I’ve been hit by a train, but I’ll be alright, I’ll let you know how I am in a couple of weeks after I’ve isolated. And that didn’t materialise obviously because it just deteriorated, and I ended up in hospital. So yeah, it was …golly, it was worse than the flu.
Neil had “funny hilarious, sometimes scary hallucinations”. He wanted to visit the ICU to put faces to the voices he remembers.
Neil had “funny hilarious, sometimes scary hallucinations”. He wanted to visit the ICU to put faces to the voices he remembers.
When you get the funny hilarious, sometimes scary, hallucinations, which is common because you are coming out of a drug-induced coma. I’m quite lucky, in that the hallucinations I had weren’t too violent. There was a couple, but I know of other people who’ve been in my situation that when they started to come out of the coma, they attacked nurses because they feel that the nurses are going to try and kill them. Because it’s only because of what they’ve been doing while they’ve been in a coma, but semiconsciously they’ve picked up what’s happening, and when they see a nurse, they think that they’re going to assault them, so they fight back.
Luckily, I didn’t have that reaction. Mine were fairly funny hallucinations – I met Donald Trump, told him what I thought of him, because I’m not a Trump supporter. I met up with Elton John and his partner in New York on New Year’s Eve, when it was snowing on the steps of Fifth Avenue Hotel, but I had a goldfish bowl on my head. I found out consequently that that was to do with the oxygen mask that they put on me while I was in intensive care, but I actually thought…in a lot of my dreams I was walking around with a goldfish bowl on my head. So, I’m quite lucky that I didn’t have any of these really, really bad dreams. You see, and then I couldn’t put a face to anybody in intensive care. When I started to come out of my coma, the…everybody I saw I felt they were somebody I knew from work, so it looked like people from work, not nurses or doctors. I would not still have a clue what any of them looked like, and that’s one of the reasons I want to go back just to, say, putting a face to a smell or a voice and say, thank you.
Neil talked through feelings of survivor guilt in his support group. He advised never to feel guilty for surviving.
Neil talked through feelings of survivor guilt in his support group. He advised never to feel guilty for surviving.
We found when we all first started being on the group is, why me, why have I survived? There was a lot of survivor guilt. Why did I survive? And I questioned it myself, I questioned why have I come through this, what am I meant to do now I’ve been given this opportunity to live? And all I try to be is the best person of me, the nicest part of me. But we all did have survivor guilt, every single person on my support group I’ve met they all questioned, why me, why didn’t I die? Well, because you didn’t want to, subconsciously you did not want to die, you did not want it to beat you. If you go in with the mindset that you’re going to die, you probably will, but if…like me, I went in there I’m not going to be…if I’m going on a ventilator I’m going on a ventilator, but it’s not going to kill me. I’m coming through this at the end of it – and I did. And that’s what we’ve all said is that we were all positive that we wanted to survive. And don’t ever, ever feel guilty if you have survived something, whatever it is; if you’ve been into intensive care for whatever reason, if you’ve survived you’ve survived because your body is telling you that you want to, and your brain is telling you that you want to live. If you don’t want to live you won’t, but if you are strong enough and you don’t know it…you probably don’t know that you want to, but you will. And that’s the only advice…that’s the other bit of advice I can give is, don’t ever feel guilty for surviving, because doctors and nurses want you to survive and your body wants to survive, so that feeling of guilt is irrelevant. It’s hard to take at first, but you never felt guilty for surviving.
Neil was clapped out of the ICU by the staff to the MAU [Medical Assessment Unit] and then to the general unit after a week.
Neil was clapped out of the ICU by the staff to the MAU [Medical Assessment Unit] and then to the general unit after a week.
And when I came out of ICU all the staff were saying, you can’t go yet, we’re not ready. I said, what do you mean, you’re ready? They said, we’ve got to get all the staff ready. And you’re in your bed going to a new ward and they actually applaud you, the whole shift of nurses, healthcare assistants, doctors, specialists, they cheer you out. You turn into a bloody mess. And they also did that for me when I came out of MAU [Medical Assessment Unit], exactly the same thing, in the bed, the whole…every staff applauding me, high fiving me.
Okay, so I’d spent about a week in MAU [Medical Assessment Unit]. And it got emotional when I left because the nurses at the time there were more people dying than were pulling through, and it’s still the same for them and they must be absolutely mentally exhausted. But one nurse said, you’re coming off the ward today, Neil, and I don’t want you to go but you’ve got to go – when do you want to go? I’d better go now because if we stay here, if I keep you for a couple of hours, me and you are going to be in bits, we’re going to be crying all over the place.
When Neil had a secondary infection that was a set-back. He told the physiotherapists and his doctor that he needed a break. His physio supported him until he no longer needed support.
When Neil had a secondary infection that was a set-back. He told the physiotherapists and his doctor that he needed a break. His physio supported him until he no longer needed support.
So, I got moved and then I went up to another ward. I was still obviously very weak, but I was at a stage where I was coming off the oxygen from 24 hours to lower levels, I began to start to walk – and then I got a secondary infection. And I’d been coming on really really well, I was known as the smiler on the ward by the doctor, My Happy’s happy, and one day they told me I’d got a secondary infection, the blood count had gone down again, I just felt really grotty. And the specialist came around and so I turned to her, I’m not in the mood for anything today, I’m sorry I’m just not up for this. I’ve done so well, and I just feel like I’ve been kicked in the belly. The physios came around and said, are you getting up? I said, no, just leave me. I need a day to process what’s actually happened. And they said, no, it’s fine, it’s absolutely fine, we know what’s going on and it’s a bit of a dip for you, but don’t worry, you’ll get through this, we’ll put you on some antibiotics.
And it was a dip, you know, it was, just because I’d such a great curve of recovery, I didn’t want any dips – but I did and it happens, so… So, that was about the only really low point of it. So, they were just treating me; the physios were giving me exercises and trying to get me off the oxygen, just trying to build my strength up really. And that’s pretty much how it went for the next five weeks. So, it was nearly seven weeks I was in the [name hospital] and progressing every day. Towards the end, even though I now look back and see pictures of me, I was still very, very ill. I was very anaemic, I felt like I couldn’t run around but I felt like I needed to get home – but it was all due to the fantastic care of all the staff in the hospital that I actually got there. There we go. [Dog barks].
He’s cheering you on.
Yeah.
Quite the story, yeah.
So yeah, it’s an experience I obviously don’t want to go through again, but the support I’ve had…I had physio for eight months up till November. And it was…I didn’t realise but [name] was doing my physio, she was actually my physio when I was in a coma, so I had her treating me or telling me what to do from April till November. And again, that got…the day she said, I don’t need to see you anymore, got very emotional. Because that was somebody that had seen me at my worst, and for her to tell me that I could go and not be able to…don’t have to come back was such an achievement for me to be able to do for her. And yeah, so it’s been very emotional.
Neil joined a support group of people who had also had Covid and had been mechanically ventilated.
Neil joined a support group of people who had also had Covid and had been mechanically ventilated.
We have a support group for like-minded patients…like-minded? Similar situation patients who have had Covid and ended up on a ventilator, and that’s helped, that’s been a great help because it’s sharing your experience, like we are now, with people who’ve had the same thing. And you feel that you’re isolated and so, I’ve got this wrong with me, and they’ll say, well, hang on, I’ve got that…I had that. You’re not the only one who’s had these problems. And I’ve been able to share common symptoms/problems and it was such a help.
And I’m just a bit…it’s unlucky they’ve changed the days from a Monday to a Wednesday, and I work every other Wednesday and it seems to clash when I work, so I haven’t seen any of the group for four or five months now. And they call me the…what was it? Hmm, not focal point…what was it? Oh, de de de de…not hero… I can’t think of it. This is the other thing with Covid – my memory sometimes goes. Well, I’m like an example – that’s not the word she used – because I seem to recover a lot quicker than some of the other people on there.
I was lucky, just lucky that I have, and I’m back at work full-time and I have been for a couple of months now. But the people in the group said, we look at you and you show us where we can get to, and you are…I can’t think of the word, but it will come to me, but they…I…they appreciate that it takes different lengths of time for different people, but they know that they will eventually get better.
It’s like an inspiration?
That’s it, that’s the word, I’m an inspiration. And I said, I never ever wanted to be…I’ve never attempted to be an inspiration for anybody, but if I have inspired you, well, that’s great. And that’s the word, she said, you are my inspiration. I was nearly crying. When you’ve been talking to people for six/seven/eight months you do get an emotional…even though it’s over Zoom like this, you do get an emotional bond, and I miss them, I miss the group, I miss having a chat with them, so...
But it was such a positive experience of being able to share your issues, and just to say to people, it’s not wrong, it’s not…if you’re having a bad day, you’re having a bad day – it’s not wrong to feel down. We’ve all had good days and bad days, but the good days are more than the bad days. And you just accept that you will sometimes wake up and feel really, really tired, you can’t do it, you can’t do what you normally can, but it’s what we’re all going through, and it’s just that bonding and moral support that you’re not the only ones in this boat.