Experiences of Covid-19 and Intensive Care

What I have said to people is about Covid is about being aware of, more so older people, because I can see how people were…I think I left it too long to go to hospital. And when I know people have got it, so when some of my staff had it, I was checking in with them every day, how are you feeling, getting them to check their temperature. They’d be, oh I’ll be all right tomorrow. No, no, because a lot of people will just ignore things. I said to people if you’re coughing and you are literally struggling to breathe you need to get hold of your GP or make sure you get somebody to look at you, because the longer you leave is the reason that you end up…to me if you get pneumonia in your lungs that’s it, you’re going to be on a ventilator. If you get in early enough that you don’t have that and you can have antibiotics or whatever they can do, give you the drugs and stuff to make it better. I’m not a doctor so I can’t say, but I think from what I’ve watched things on TV and listened to people about it and stuff and what happened to me is I think some people leave it too long.

But it affects people in a different way. Some people can feel really ill but… Actually, one of my colleagues at work he got it, he felt really bad, but he didn’t even get a cough, so it didn’t get to his chest. And then my other colleague got it and she’s still got it on her chest now really, she’s still coughing. She’s recovered but she’s still coughing, but it sounds more like a fluey cough than what you saw with me.

So, I’m telling people to be aware. And also, how easy it is, if you don’t keep your distance the chances are you’re going to get it, especially now. It is difficult because we’re human beings, we don’t like no human contact and stuff, just like me, so it is really difficult. None of us like wearing masks. It’s hard. But people just need to be aware it’s real.

I said to myself, when I was, as everyone else, I was asking myself question, why is this happening to me? Why me? I’m young, relatively young, healthy, I have no pre-existing medical conditions. Why I ended up in such a dramatic state. And couple of years ago I read a book in which the author says the, a very important thing which I’m remembering very vividly, namely that when something bad is happening with good people the question that you should ask is not why it is happening to me but the question you should ask is now that this happened, what am I going to do about it? And I said to myself, I’m not going to anchor myself into this horrific experience but I’m going to see in this whole thing. And I said, if my story can be an inspiration to other people, if my story can be a warning to other people, then I’m going to use it as often as possible.

So, I said to myself, I’m going I’m going to go on social media. I’m going to respond to all enquiries from television, radio, newspapers, whoever would like to hear my story.

I’m going to speak on conferences. I’m going to speak or anywhere that they will invite me simply because I felt that so many people, first of all, need a lot of hope because especially in the second and third wave we have seen with the high number and, unfortunately, within my family and circle of friends I had a lot of people not surviving this pandemic. And sharing the kind of hope, sharing the kind of willingness to carry on was so good with a lot of people and on the other hand, telling people my story in a way to express the kind of warning that if this could have if this could happen to me, it could happen to you so take all the precautions. So, when we had only the face mask and the social distancing and washing our hands, I’d been telling people that by wearing a mask don’t look at yourself as a as a victim. Look at yourself as a hero because what is common in heroes, most of them are wearing a mask and they save lives, and this is exactly what you would do when you put on the mask. Maybe without knowing, you save a life or two or may hundreds of lives, or you can make a big, big change in a lot of people’s life by avoiding a possible transmission.

I’ve done the same thing when the vaccines become available. I was backing up this campaign and one of my social media posts was, for example, showing a picture of me back in April 2020 with an oxygen mask on my face and I put the inscription, this was six days after I was tested positive with Covid-19 and another picture from January 2021 completely healthy and smiling and I said, this is six days after I got my vaccine. So, I was I was trying to promote this message that this is the way out of this pandemic by adhering to these measures, by taking the vaccine and this is not just for our own benefit, but we have the kind of social responsibility for others. And it was it was so good to hear a lot of positive feedback from people, from people that I know or even don’t know telling me that, “I’ve took the vaccine because of you.” “I took things more seriously because I’ve heard your story.” And when I when I started receiving this kind of feedbacks, I thought to myself that, and this might sound very weird, that I’m kind of like thankful that I went through this experience. I feel lucky and blessed that I’m alive and still I have a story to tell, and I can make a difference in a lot of people’s life. And looking to this whole experience like this, it’s it just it just puts a smile on my face. I’m not sad. I’m not depressed. I don’t have flashbacks.

I’m not suffering of PTSD. It just makes me happy that through this horrible experience I was able to make a change not only in my own life but hopefully, in hundreds of other people’s lives as well.

And do the two of you, would you say you have a message for other people about ICU and Covid and recovery perhaps?

Yeah, it’s not always easy. But, if you get through the intensive care, to me that’s the door opening to the rest of your life, isn’t it? And recovery from any major illness is awful. I think you’ve just got to talk about it, be honest about it, say when you feel crap, when you feel bad or you’re having a bad day. My husband still does not, where he still has dreams, he has a lot of problems sleeping. So, we try everything to try and help him sleep. And then, you know, he has a lot of dreams, that sometimes he finds disturbing, but he tells me about them, we talk about it, and I think that’s the best thing.

Keep away from social media and the news, because you don’t get a balanced view or information. And I suppose, keep talking. Just find someone you can talk to, and if that somebody is on Intensive Care, a group outside of it, somebody who’s had a similar experience, whatever, just find that anchor point, because that will help you then to know what… ‘cause you don’t know what you need at that point. It’s only a year later that I can sit back and go, yeah, that’s what I needed, or that’s what I need going forward. You won’t know that, so just find an anchor point and stick with that. I mean, that might be the Ward Clerk, I don’t know, it can be anyone. But just find that anchor point, ‘cause they’re important.

Yeah, appreciate the staff, you know. And that’s not just people who have been in ICU. I think generally, patients don’t realise just how difficult it is being in hospital. And particularly I think if you’re in ICU at the moment and you see so many people die. And I really picked that up from the number of ICU staff who wanted to come and see me because I was their miracle, I was their one who had survived against the odds. And that gave them hope, I think. So, I think for patients, yeah, appreciate the staff, be grateful for what they’re doing. Because even if you think they’re doing a rubbish job, 99 per cent of the time they’re doing the very best they can. And even when they’re not doing the very best they can, they’re doing their job, you know. Some people are overdoing their job. I think I would say 90 per cent of the staff I worked with are doing more than they should…could…than would be reasonably expected for what they’re paid.

Is there anything like a message you’d like to give to other people who’ve been to…you’d like to tell other people about intensive care and Covid?

There’s so many things you could say, isn’t there, I don’t know, I just…I think it’s horrible, but I think, you know, with all the support and everyone around you, you can…and you’ve got to be positive. You can get through anything, can’t you, and you know, like I said to you earlier, my puzzle was completely scattered, but everything was there, and it’s all piecing it back together, and my puzzle’s got a long way to go, but it’s nearly there, and that’s only three months, and you know, a few days ago I had a few bits of my puzzle gone again, but they’re slowly going back, and I think it’s just going to take time, and that’s what you’ve got to give yourself, is time, and we don’t give ourselves enough time, do we? That’s the problem. We just don’t, and we need to, and it does take time. But yeah.

How do you do it, give yourself time?

I don’t know, I don’t honestly know. It just…you’ve got to not be hard, you see. I gave myself different goals and achievements and I always would speak to my husband or kids and anyone, and they’d look at them and go like is that achievable, and then I’d usually re-evaluate them and have a look and go, no, maybe not actually, but that’s what I wanted to do. I wanted to do that but wanting and being able are two very different things, so I’d give myself that goal of walking that three or four houses down, where my original goal would have been, we’ve got a post box, I’m getting to the post box. That wouldn’t have been achievable, but it’s what I wanted, and there’s a big difference, isn’t there? What you want and what you can achieve, and if you set your goals too high, you’re going to fail, so you’ve got to be realistic. Yeah.

It’s not easy.

No.

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.

Is there anything you would like to tell other people about intensive care and Covid, now that you’ve been through it all? As you’re now an expert.

Oh, I don’t think so. Well, my main thing is, is if you haven’t been jabbed, please get jabbed, it’s the only way that really is going to save your life. That Covid experience for me, I don’t know how it affects other people, but for me it was long, it was traumatic, it was on the pinnacle of me dying, a few times. I would say, probably, never give up, keep, you know, trying to go forward as best as you can, but take one day at a time. Because every day that’s…if you can get through one day you can get through a next, but you’ve got to take it on a daily basis. Because with the long Covid is that you can develop all sorts of different things, and you have to try and battle them one at a time as best as you can. And always, if you’re never sure, just ask the experts, phone your doctor, get as much information as you can and tell them clearly what you’re going through, it doesn’t matter if it seems silly. I mean for me when I was experiencing different things that I didn’t say at the time when I probably should have so the doctor could make a better diagnosis of what I was experiencing. Because to me everything I’ve experienced since I just put down to the Covid and that’s what people go through; when really, I probably should have asked the doctors or the nurses, or whatever.

What would be your message for staff?

I think my first message would just be thank you. That’s the first thing. Just thank you for fighting so hard. I think my other message would be…because I know how hard it is for them, there’s a story called the Starfish Story. It’s a very short one and it’s my message for all nurses is, there was a boy walking along the beach. And a man was following him, and the man saw this boy bending down every so often. And the beach was absolutely littered with starfish, and they were going to die because the sun was coming up. And every now and again, the boy would bend down, pick up a starfish and throw it back into water, where it would be safe.

And the man was really puzzled by this and eventually he caught the boy up and he said to him, what are you doing? And the boy said, I’m throwing the starfish back because otherwise they’re going to die. And the man said, but there’s thousands of starfish on this beach, you can’t make any difference. And the boy bent down, picked a starfish up, threw it back and said, I made a difference to that one.

And that’s what I want the nurses to know. They made a difference to this one. They can’t…they just can’t save everyone because it’s such an impossible situation. And they can’t do everything for every patient. But all the nurses and healthcare assistants and doctors and physios and OTs, everyone in the hospital made a difference to me in a positive way at some point. And I am so grateful for that.

What would you say has been most valuable in helping you recover?

Everybody, everybody around me. Everybody around me, because what they say to me is it’s only a few who are able to cross the line and come back to tell the story, so because they know most people die if you go to that extent of… Because look, don’t tell a lie, at the hospital I was the first to recover, and when I recovered, the whole hospital lined up clapping for me, which from when I was coming out of intensive care, the whole nurses and doctors, everybody lined up and clapping, you know, for my recovery.

So, it’s like that’s when I began to wonder what had transpired, even though I was just lying down in that vegetable or cabbage state, you know? I began to appreciate if they had to do that, then their time is worth whatever it is, wow, and I thanked them all for the good work they did, and God bless them and their families. The courage as well they’ve got in that pandemic, because sometimes when they come, and you could see the fear in their eyes… And I say kudos to them, and God bless them all.

Yes, because you were one of the very, very early patients, so very little was known and also, yes… So, when you say fear in their eyes, did you get any sense of how difficult it was for professionals at that time?

Yes. It was… Look, when I was growing up, we learned about deadly diseases and like, say, for example, anthrax. You know, I grew up in Africa, so I know about deadly diseases and water-borne diseases and viruses. But never had it ever struck me in my face, in reality, my learning and reading in books and warning me about it, but for it to stare in your face, glaringly, like that, you know, it was an experience. It was an experience, I’ll say. Yes, because anthrax, when you read about it, yes, you should be expecting something of that nature, tuberculosis as well, you know, and for them to be coming near me as well with me having what you call an airborne disease which, if they breathe in, or any gaseous exchange, it will affect them directly or indirectly, and they have families, come on. I mean, who would put his life on the line to save and rescue another human being, knowing very well the consequences? So yes, I do appreciate their hard work and effort.

My GP was so supportive. The medical tests and the post-Covid team were great, but I feel like, after discharge from hospital, I honestly think in so many ways, my GP sort of saved my life. ‘Cause I think I was in such a dark place when I came home. And the hospital were extremely supportive, but I think, probably because she’s known me the longest and knows me best, she was the one that picked up on the fact that I really was not the person I was when I went into. So, I think GPs probably don’t get enough credit during this Covid journey, because they’re not, you know, the people with the masks on, putting tubes down you and injecting you and stuff, they’re sitting in an office, dealing with patients. But I don’t think I would have got through those first few months without my GP. Because I just had this huge sense of kind of hopelessness, when I came home. Grateful to be alive, but I just felt, I think I just felt really hopeless and everything. You kind of, it’s sort of like a, everyone wants you to be like, you’ve survived it, you did it. I didn’t feel like that at all. I know I got home, and I know I was alive and obviously I know I survived, but I didn’t have this feeling, like, I’m a survivor. I just felt like, I’d got back from war, and I didn’t know how to adjust to civilian life.

I’ve got the most amazing GP who knew my whole story and what happened to me in hospital. She was on the phone to me probably every day, for the first two weeks when I came home, just checking in with me. I’ve had the same GP since I was 11, and she was the person that said, I really think you have PTSD, I really want you to have an assessment with a psychologist, ‘cause I really think there’s things that we can do to help you, ‘cause I think you’re really in a bad place, so I think…I have experience of mental health, and I thought I had a good understanding of it, but I’ve never experienced it myself as a person. So, I think for someone that’s kind of gone through life always thinking, even with my haemophilia diagnosis it’s kind of like, fine, I’m like it's good, I’ve got this, I’ve always felt like I can manage everything, whether it’s my four boys, whether it’s my work. I think it was quite hard to understand that this was just something that I couldn’t navigate myself and that I needed help.

Do you remember any staff in particular from the ICU?

Yeah, I do, I do, one which shouldn’t work there at all. She terrified me, really terrified me. She was…and it’s horrible to say, she was a horrible lady, and that’s one of the reasons that I didn’t think I was going to make it out, because of how she treated me, and that’s… yeah, she was awful, really awful. And then I can’t remember the nurse’s name in the evening, who gave me the iPad and told me to phone my family, do you know what, he was a lifesaver, absolutely changed everything for me. And I tried to find out who he was, just to say to him…he didn’t do anything above and beyond what any normal human being would have done. It was just the one thing of…and he didn’t even talk to me really nicely as in like, oh…or like that, he was just like, phone your family. Phone your family, look, I’ll go and get something and phone your family, really matter of fact, really bang, bang, just like, you know, well, what’s the problem love, phone your family, sort of thing.

And he did, he brought it out and then he just kept coming over to me and…I mean, I think they only looked after two patients. He was looking after me and this man that had been on the ventilator for ages, and he said to me, oh, your…he said, it’s a good job he’s asleep, he said, because you’re going to take up a lot of my time. And he was really funny and nice, but…and he just…he was brilliant, but like I say, he didn’t do anything, and he probably would not have any memory of me, because what he did was just so normal, but it was really nice.

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.

So once I started doing it, yes, it was pretty hard the first few times but once you start getting into it and get your appetite back, the hospital and my local NHS had sent a load of these amazing shakes which were so full of nutrients and god knows what, I was drinking two of those a day, just cramming myself full of nutrients and extra protein and stuff like that to try and kickstart my muscle mass coming back. I looked at myself in the mirror and my legs were just like two poles. It’s amazing how quickly your muscle just falls away. So I’d lost all my muscle mass but like I said, after six weeks by mid-July, end July I was feeling pretty good, well enough to go to Cornwall and take in some sun, have a bit of a laugh and, yes, ever since then I’ve renewed my love for being fit, decided that although I still feel, I don’t know what the correct term for it is but I would just say, slightly chesty, you know, there’s always a bit of congestion in my chest and I think that the exercise is good to get rid of that.

So that’s when I decided that I would get a new mountain bike and I would do this challenge. It was something that I always wanted to do but to give myself a target, to make it 31 March which was the day that I was put into an induced coma last year to be actually on the South Downs cycling a hundred miles on 13,000ft of elevation is a good way to say to Covid, you know, stuff you, but also a good way to say to the guys at [hospital], thank you, you know. It’s a credit to you that I’m well enough today to do that. It was the care that was given then, that I’m reaping the benefits of now. It’s a very strange way to look at it but I think it’s a good kick up the arse for me to realise just how precious life is and, yes, not to be squandered.

…since I did that JustGiving site for this cycle ride, believe it or not, I’m raising money for the hospital and some of the people who have donated are nurses that looked after me which has totally blown my mind.

When I was recovering, I came out of ICU and recovering on another ward, I’m a big football supporter and my football team’s Hibernian, and some of the players phoned my son at home to wish him well and cheer him up. I got two of the Hibs players sent the video messages to cheer me up, and I got a phone call from one of my heroes who used to play for Hibs in the 1970s. His name was Pat Stanton. He phoned me, and I could not believe it. It was such a boost to my recovery. My wife handed in my mobile phone to the hospital and I had over 300 messages and texts from people wishing me well. At the start, in hospital they were texting once they’d heard, so they were sometimes 25 days old, these texts, but I couldn’t see them, I’d been in a coma, but I had a chance to read them, and people were just so on my side.

But the football players sending messages to me was really fantastic, and when I came out of a coma a couple of days later one of the nurses actually said to me, I’m going off…I’m on a roll now, I just keep remembering things. Sorry about this. She says, do you know Hibs…she knew Hibs were my team, they’re the first team in Britain to put thank you, NHS on their strips, on the front. I didn’t realise that because I’m in a coma. Then when I started to get better on ward, I thought I’ve got to try and get one of the Hibs strips and get all the doctors and nurses and consultants to sign it and try and raffle it and raise money to put into ward 20 at the hospital. So, when I got better, I done that, I handed the strip in and I got all the doctors and nurses to sign the strip. Because usually the football players sign the strip and you keep it as a memento, but I got all the doctors and nurses to sign it, and it’s in my house. Once lockdown finishes, I’m going to raffle it and try and raise some money for the NHS.

That’s a great idea, yeah.

Yeah.

Yeah. How did the football players get your number, and how did they know you were in hospital?

The word got round [place in Scotland]. Just friends of friends of friends. I don’t know how they done it. Someone designed a poster and there was maybe 30 or 40 people on my Facebook, they all had this poster, and it was the Hibs badge, their motif, and a Lambretta scooter, because I like Lambretta scooters, and it said welcome home, [nickname]. That’s what I get called. So, when I opened up Facebook when I could use it again all Facebook was covered in this badge. Everybody was doing it. I thought, wow, everybody was rooting for me. But friends of friends just got in touch with Hibs players and said could you do this; it will only take a few minutes. But it was a real boost to my wife and my son and my family that everybody was thinking of me.

They’ll certainly have your support for the rest of your life.

Aye.