Lynne

Brief Outline:

Lynne works part-time as a teacher and lives with her husband and three sons. She describes her ethnicity as white.

Lynne had mild asthma prior to having Covid but this didn’t worry her because she was generally so fit and healthy. She caught Covid in March 2020 and was too unwell to work for a year. She caught Covid again in February 2022 but she feels like she is starting to recover from her Long Covid.  Her husband has been very supportive. She doesn’t like being not able to do everything that she used to be able to do. Lynne was interviewed in March 2022.

 

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Lynne caught Covid in March 2020, when she had an ‘annoying’ cough and a short period of fever. After about a week her symptoms got worse and she had difficulties breathing, dizziness, cognitive difficulties, and was exhausted. She and her family were all isolating at the time, and early in the pandemic no one knew about longer term symptoms of Covid.  Lynne tried to keep working as a primary school teacher, whilst isolating and home-schooling her children, but then needed a long period off work. She struggled with activities, even walking upstairs or the length of her house, and caring for her children. Lynne caught Covid again in February 2022 and felt dreadful. When she tested positive she was really worried about how it would affect her. She was scared it would set her back. She needed another week off work after her 10-day period of isolation. Her return to work has been okay so far.

Before catching Covid, she was very active in her job and caring for her boys. She found it very difficult to be unable to work for a year, having to rest so much, and to be unable to get guidance from health professionals. 

She still experiences chest pain, fatigue, breathlessness, light headedness, and brain fog, and at times palpitations, so she has to manage her activities to make sure she is not too tired. She times her medication so she can manage the most exhausting parts of the day. She considered not returning to work at all because of her symptoms, but now she is back two days a week and she still loves her work. 
She initially worked a pattern that allowed her to rest completely between one working day and the next, but since her interview she has started to work two consecutive days so that she can recover from the weekend on a Monday and then recover from work on Thursday and Friday. Lynne said her colleagues are generally supportive. 

She has been surprised to meet people who think Covid is a conspiracy and finds that people who haven’t experienced Long Covid are less understanding. 

Lynne and her family restricted what they did to manage the risk of Covid for a long time. Because she works in a risky environment for Covid, she feels that they need to try to do more things. She worries about crowds but is forcing herself to do more things she loves. Her husband still worries about being the one who could transmit Covid to her, so doesn’t do his previous activities. Previously she would not have described herself as a risk-averse person but now she and her husband try to weigh up the risks with how much they enjoy or need to do things, which is exhausting. It is hard for the children to understand why they can’t do things or have to help with chores. Lynne’s husband is supportive and, because he now works from home, takes on a lot more of the daily household tasks. Lynne doesn’t like that he worries about her and is frustrated by not being able to do things that she used to. 

Lynne initially spoke with various doctors via NHS111 who advised her to stay at home. She is asthmatic and was using her inhaler up to 40 times a day. The doctor prescribed steroids and antibiotics, but they didn’t help. After months of feeling exhausted and being unable to breath, she managed to speak to an asthma nurse who got her a GP appointment and changed her medication which helped a little. She had low oxygen levels that may have explained her dizziness and cognitive difficulties, and was sent for tests that all came back normal. She was relieved when the GP told her there were other people affected in the same way. 

After a year her GP agreed it was likely to be Long Covid, after ruling out other causes. She was very frustrated when a respiratory consultant she saw told her that her problems were psychological and ‘all in her head’. She found this interaction devastating, as it took away her hope, and she is not the sort of person who dwells on things or is prone to depression. However, she was able to access a 12-week Long Covid programme in June 2021. It was a huge relief to be on the programme and to be finally getting help. She found this very helpful and thinks it was a turning point in beginning to get better. She got support to help her with pacing activities, physical exercises, and mental health, and it gave her the chance to connect with others in a similar position. 

She still uses the techniques that she learnt. The advice from the programme helped when she caught Covid again, and she can now see that she is getting better. At the moment, she is not being followed up by her doctors to see how she is doing and whether her medications need changing.

Lynne wants to know why only some people develop Long Covid. She would encourage others with Long Covid to rest, not push themselves, speak to others with similar experiences, and try to stay positive and pay attention to small improvements.  She would advise health professionals to listen to and believe people, and to give realistic estimates of how long recovery could take, so they don’t put pressure on themselves.  

 

Although Lynne’s asthma had been well controlled before, after she got Covid she needed to use her inhaler up to 40 times a day. Eventually she was able to speak to her asthma nurse who straightaway realized that she needed to see her GP.

So, unfortunately, after a few weeks, it hadn’t gone away, and I was getting gradually worse, rather than better, and so at that point, obviously nobody knew about these long-lasting effects. I wasn’t able to speak to my GP because it was a case of, well it’s Covid related, phone NHS twenty-four. So, I was speaking to a variety of different doctors, and just saying, you know, it’s not going away, so, their advice was, you have to keep staying at home. So, it went on, I think it was about seven or eight weeks, we all had to stay isolated at home, because I still had symptoms.
 
And my breathing during that time was getting worse, and worse, and worse. To the point where, one of the doctors advised me, just keep taking your blue inhaler, as much as you need it. So, I was taking it about forty times a day at one point, and I was saying, you know, that this was really unusual for me, I don’t think that’s very good for me [laughs]. But that, that was really the only answer. Apart from an occasional, then, I was getting, just steroids, and antibiotics thrown at me as a, a safety net of, well if it’s something else, then it would catch that, so it was just, keeping taking your anti…keep taking your inhalers, take this antibiotic, take steroids, and there’s nothing else we can do for you, we don’t know what’s going on. And eventually, one of the doctors that I spoke to said, you're not the only one, other people are having this as well. 
 
So, it was sort of reassuring, but at the same time, it was that worry of, well what’s going to happen, then, because it’s not going away. So what help, what’s the next step. And there wasn’t really a next step. So, I was just getting gradually worse. At the same time, the kids were trying to be home-schooled, my husband is working full time from home, and I was also still trying to work, 
 
But so, it was just a case of, get to the summer holidays, but by this point, I couldn’t walk the length of the garden with the kids, I couldn’t play with them. I struggled even to get from my living room into my kitchen, struggled to get upstairs. Obviously, washed and dressed, and things like that, I couldn’t, I just couldn’t get a breath, couldn’t breathe, I was exhausted. So, it was tough, it was really difficult, at that time, eventually, it went on, this went on for months, and eventually, I think it was my mother-in-law who very helpfully said, can you speak to your asthma nurse, rather than trying to get your GP, who, quite rightly, the receptionist just kept saying, no it’s Covid related, you can’t speak to them.
 
But I felt like I needed to speak to someone who had a little bit of understanding of my medical history, and that this wasn’t normal. So, thankfully, I spoke to my asthma nurse at the GP clinic, and she was just fabulous, and straightaway said, no, this is not right. And straightaway gave me an appointment with the GP, to change my medication, which was helpful.
 
So different inhalers, and then started taking Montelukast which helped a bit. But yeah, I was still pretty much unable to do anything, really. I couldn’t go out for walks, couldn’t really play with the kids, I struggled even just to put them to bed, or bath them, or anything like that. So, it was a complete change, because usually I'm fit, healthy, very active.
 
It was a big change, so, yeah, so that went on for a long time. And then obviously, when it came, the end of the summer holidays, I just couldn’t go back to work, so I had to have that conversation with my boss of, I can’t physically do it. As soon as the schools were going back in, and not home schooling – home schooling, I could manage. Although it was very difficult, having my own children at home as well, I could manage, because I wasn’t standing, it wasn’t talking. Because I find it difficult to talk for long periods of time, it was a bit easier, but as soon as the kids were coming in, I had to say, I can’t do this.
 
So, I then ended up off work for over a year just because, physically, I wouldn’t be able to physically manage to do it.

 

In between the days when she was at work, Lynne had to go to bed and sleep until her children came home from school.

And so what are those days after work like, then, for you, those days, almost like recovery days, what do you do on those?

Yeah. It depends how I feel. Sometimes I spend all day in bed. I get the kids up and out to school. My mother-in-law is fabulous. On the Tuesday, she'll come, and she'll pick them up and take them to school for me, and then she brings them back home. So, if I have a day that’s not so good, I don’t even have to get dressed, I just have to get breakfast, and the kids organised, and out, and then I just go back to bed, and just sleep all day until the kids come home. And then other times I feel okay, so I’ll maybe just potter around the house, or go for a walk, if I'm feeling good. But sometimes I've got work to do, so I spend my day doing work for the Wednesday, and then try and rest. And Thursday is similar; I get the kids to school, or if I'm not feeling great, my husband will take them, and then sometimes I sleep the whole day, and sometimes I just rest and read, or sometimes I feel okay and I can go and have a cup of coffee with a friend, or something.

I'd say it’s getting, gradually, fewer days of having to sleep all the time, which is good. Because when the kids first went back to school before I went back to work, it was sort of, five days a week, I was just sleeping for six hours during the day and then, going to my bed at nine, ten o’clock, and sleeping all night, and I just felt like all I did was sleep. But I do think that doing that has helped because I don’t need to do it as much as I did.

So hopefully, not just pushing through it didn’t, that possibly would have caused further damage, and as much as you wanted to…

Yeah, the decision between, do you push through, or pacing. Because at first, I was told to push through and I realised by myself that trying to do that, it wouldn’t, I would try and go for a walk, and it was short walks. I mean, I was walking around the block. So, I would try and do it twice instead of once, and I quickly realised that, if I did it twice, I would then be floored and I said to myself, I was going to ignore that advice, and just pace myself, and build up very, very gradually, walking a tiny bit further every day and that’s worked better.

Lynne had suddenly felt very unwell whilst she was out at a concert. She couldn’t breathe. At the out of hours service, it was frightening to see that it looked “as it they were preparing for something horrendous”

I'd travelled with my sister to the concert, and you know, getting out the car I said to her, you know, I think I'm sick, and she said, “yeah, I think you’re sick as well, go in, go to bed”. And it was during that night, that I couldn’t breathe, and it just seemed to come from nowhere. Because I felt like I was getting better. Otherwise, I wouldn’t have gone to the concert, just a bit of a runny nose, I was fine, and then it just suddenly seemed to get much, much worse, just over the space of a few hours.

And was it then that you went to the out of hours?

Yeah, it was the next morning, early the next morning. So, I'd sort of been up all night, inhalers, I didn’t want to wake my husband or the kids up, I was getting a bit concerned that I couldn’t breathe, my breathing was really bad. So, yeah, the next morning, early in the morning, I phoned out of hours to see if I could speak to someone.

And did they see you in person?

Yeah, yeah. Which was, it was so strange, because that was the first experience of the full PPE and going into the out of hours and there was all these beds laid out, I'd never seen anything like that. I've had the kids, you know, three kids, I've had them at out of hours multiple times over the years, and just seeing, it was as if they were preparing for something horrendous. And it was quite frightening, actually, to look at it and think, what is, what’s coming our way. And now we know what was coming our way, but the full, the mask, and the full PPE, and it was the first time I'd seen that, and coming home to my husband and saying, this isn’t good, this is really not good, but yeah. At least I was seen by someone.

Lynne was “devastated” when a consultant from a Long Covid clinic suggested her difficult respiratory symptoms were “all in her head.”

I also had a consultant who I was waiting to see for ages, and so happy to get to see someone who would be able to help, who told me it was psychological, that I had sort of latched onto this Long Covid name, and it was all in my head. And I thought, well I had it before it was a thing, like, I didn’t even…I was one of the first people who were saying, this isn’t going away. So that was very difficult to hear that from someone who was supposedly an expert.

And what was his specialty, what was he a consultant of?

Respiratory. And he had come up from England because he had a Long Covid clinic in England, so he was seeing Scottish patients. And that’s what he said that it was in my head, and I should take antidepressants. Which, thankfully, my GP knew me well enough to say, that’s not accurate, you know, and in her opinion, it is Long Covid and that that’s not a fair thing to say [laughs]. So, I was disappointed, because I thought he was going to solve all my problems.

That’s it when you’ve been looking forward to an appointment with somebody…

Yeah.

…and you’ve kind of latched your hopes on them, and then that would have been really hard, I think. How did that leave you feeling?

Oh, I was dreadful, I was devastated, I was just devastated.

Yeah. Sorry, sorry. Are you alright, just take a moment. It’s really hard, isn’t it, when you’ve been through all of that, and it’s just, it can be hard to talk about stuff.

Yeah.

And that must’ve been a particularly different moment, I would imagine.

Yeah. I mean, it was the way he said it, he said it was, this is what he found with, Caucasian women [laughs]. And I was furious, I was so angry that he was, you know, a professional man who would say something like that, a Caucasian women, it tends to just be psychological, and that they just need antidepressants. And I should be depressed, but I'm actually not [laughs]. I was actually psychologically, okay [getting upset].

 

Lynne said the gym programme “made a big difference” to her. This was because it helped her to see improvements that were happening.

Then I heard about the [gym-based rehab programme] and managed to get onto that. And that was, that made a big difference, there was a lot of focus on mental health, which was helpful. Although I've remained fairly upbeat about, you know, I’ll get better, I'm gradually getting better, which I suppose was quite helpful. But the course was great. Because, very gradually introducing little bits of exercise, setting your own pace, and just trying to see that, slowly, I was getting a tiny bit better. I think that was, mentally, very good, to be able to see tiny improvements, and gradually build up to getting a wee bit more active.
 
Yeah, yeah, generally feel…for a long time I felt like I was getting nowhere, and there was just, there was no real improvement for a long time. And then, I think through the [gym-based programme] thing, as well, picking out little things that you can see an improvement in, and it was really good, psychologically, really good, mentally, to see, actually yes, it’s getting better. And I can see that I'm making a very slow – very slow, painfully slow – progress in the right direction, most of the time. And then you’ll have a dip, but then on the other side of it, you're still back to a better place than you were maybe a few weeks before. So that’s, it’s good, it’s just painfully slow. And it’s the, does it stop at some point, and that’s it, or does it keep getting better.
 

 

Lynne was worried about getting reinfected with Covid. She had to make decisions about which activities she was willing to risk. Often this meant saying no to things her children wanted to do.

And it’s hard for the kids to understand. I do feel for the kids, because they have things like, can we have friends over – yes, but you have to stay outside. But they're allowed to go into other people’s houses, but they're not allowed to come in our house. We do have the excuse of, Dad’s working from home, so obviously if Dad is working, you have to stay outside. But it’s just that risk factor. And if they're going round to a friend’s house, well I don’t really want to let them go to someone else’s house, and no harm to them, I mean, they're in the class with them, all day. And it’s just, it’s trying to make sense of what’s the right thing to do for them. But it’s hard. Can I have a sleepover – no, you can’t have a sleepover. Can we go to soft play – no, you can’t go to soft play. It’s just, there seems to be a line for us of what’s risk that we will take, and what’s risk that we won’t take. But the kids find it hard to understand.

And how much of a change is that for you, would you have said, before COVID, were you kind of a risk averse sort of person, or…?

No, no, not at all, no.

…is this something new?

Oh yeah, this is completely new. No, we just did everything, I always sort of encouraged my kids to take risks, climb trees, try and swim in the sea, go and try and swim in the sea, it’ll be fine, and if it’s not fine, you know, we’ll find a way out of it. Very much tried to encourage them to do things on their own, and yeah, I'm not a risk averse sort of person, at all. Yeah.

So it must be hard to be going through that change, it must be quite, almost like a conflict, in a way, to kind of always be trying to work that out.

Yeah, because the automatic first answer to everything is, no, we can’t do that. And then you have to rationalise it, well is it, how much of a risk is it, will we do it, are we willing to take that risk, is it worth that risk. It’s exhausting, and it’s with everything all the time. My son, my youngest son needed new plimsoles for school, so on Saturday, come on, we'd better go and get them, and we arrived at the [shopping centre], and it was so busy. And I'm sitting in the car going, am I going to get out of the car – yes he needs plimsoles. Do I want to get out of the car – absolutely, I do not want to go in amongst all those people, because they're not wearing masks. And even when you get out of the car, and, oh mum, it’s really busy, and I'm saying, yeah, but we need to go and get your plimsoles, and we need to go quickly, and we’re going to keep our masks on outside, and we’re going to rush into this shop, and then rush back home again. It is exhausting.

When Lynne met someone who said Covid was “just a cold,” she felt frustrated. She was absolutely shocked and “completely bamboozled” when Lynne described how life changing her symptoms were.

No, I don’t think it’s well understood. I think the perception of it is you're a bit tired, and it’s not tiredness. I know for some people, it is. And I think there’s also a range of symptoms that people have. I'm not, I have the symptoms that I have, but that doesn’t mean that the next person has the same symptoms. And I think that’s where it becomes confusing because there’s such a range of symptoms. I think if it’s a particular disease, then the symptoms are understood, and they're known, and they're generally the same. But with this, it seems to have so many different permutations, that it’s hard, when you say to someone, I suppose if you’ve never experienced it, and you don’t know anyone who’s experienced it.

I actually, I took my youngest swimming one day, and it was just in the baby pool, there was that much water, I was sort of sitting, and a gran came and sat down, and was chatting. And we got onto the subject of Covid, and it’s ridiculous, everything is still closed, it's just a cold. And I could feel myself – and I didn’t even know this woman – and I could feel myself getting sort of frustrated, and, don’t say anything, don’t say anything. It’s just a cold, it’s a lot of nonsense, they shouldn’t be shutting everything down, it’s a total overreaction. And then of course, I had to, “Actually, I had it.” “Oh, I don’t know anyone who’s had it.” I said, “I've had it.” “Oh, and was it just like a cold?” And then I explained, and I said the symptoms I've been left with. And she was absolutely shocked, she said, “I've never heard anyone who’s had Long Covid,” and she was like “I'm really sorry that you feel like that, but it just, it seems unbelievable, I've never heard of anyone else who’s got it, I just thought it was something the media were saying, to keep us all in.” And I said, “No, it’s not” [laughs]. And she was a retired teacher, and we spoke about, obviously, that I wasn’t able to be at work, and she was just completely bamboozled by it. As if, you know, Bigfoot is real, it’s a real thing. And I said, it’s a real thing, it’s real, and it’s completely debilitating. And I said, I'm trying to bring him here, and he's playing in the water, I said, I couldn’t go into the pool and swim, I'd be out of breath. I used to be able to swim quite a lot, I like swimming I can’t do these things anymore, and it’s because of this, and that’s how I've been left. And I said, so you need to be careful, and she was like, oh. But it was like, you could almost see her mind shift and be like, well maybe I do need to be more careful and not catch this. Because before, she just thought it was nonsense. And so that was a really interesting one for me that her whole opinion of, it’s lies, Covid isn’t as bad as they say and it’s some sort of conspiracy to keep everybody locked in their house. I just thought it was just ridiculous [laughs]. But she was a really sensible woman, she was a sensible, educated woman. And you think, where does that come from, why do you think that? Because she hadn’t had first-hand experience of it. And a lot people I speak to say, “Oh yeah, I've heard about that, but I don’t know anybody who’s got it, I've never heard of anyone who’s actually got it, do you know anyone who’s actually got it?” Well, yes, I have it [laughs]. And it’s not nice, and it’s life changing, which is awful.