Gerda

Age at interview: 43

Brief Outline:

Gerda became ill in the early days of the national lockdown in March 2020. She wasn’t tested until three months later, and both that and an antigen test came back negative. She was initially very poorly with fatigue, breathing and fainting symptoms but recovered slightly before relapsing. Gerda was bedbound for months with extreme fatigue and breathing problems and was unable to walk or care for her children. She felt disbelieved by health professionals, and it took a while to convince her GP her symptoms weren’t just anxiety. She was referred to a Long Covid clinic in October 2020 and found the physiotherapy sessions helpful, especially the pacing. It was only after an MRI scan that she showed heart inflammation, pericarditis and decreased lung capacity that she feels she finally proved that she was ill and has Long Covid. Gerda has started to improve but has to pace herself. She was interviewed in November 2021.

Gerda is a yoga teacher with two children, aged 8 and 13. Ethnic background: White British.

More about me...

Gerda began experiencing Covid symptoms at the start of the UK national lockdown at the end of March 2020. It started with a weird fainting sensation and then struggling to breathe but only for 15-20 minutes at a time. She contacted 111 but, as she didn’t have a temperature or a cough, they didn’t think it was Covid. The doctors said if her lips were not turning blue or her tongue wasn’t swelling “you’re OK, you can manage at home.” She felt really poorly during this time and her partner looked after the children. After a few weeks Gerda was improving and was able to walk slowly round the park and do gentle yoga. Then three weeks on her breathing rapidly deteriorated, she couldn’t lie down at night and she couldn’t move, needing assistance to go to the toilet. These symptoms persisted and three months on she was so fatigued she couldn’t walk.

Gerda didn’t feel believed by the doctors she had seen, who blamed anxiety. Around this time she also had a Covid test and an antigen test, but both were negative “which, I think made my doctor believe even more that what I was experiencing was anxiety.” But five months on her doctor was reconsidering as he said, “there’s a lot of other people actually who are getting a similar thing” and it was starting to be discussed as Long Covid in the press and online. Gerda said, “I knew I was poorly, but it was, like, trying to prove to people that I was poorly.” She previously had been the main caregiver for her children, but she was unable to so. The children popped in an out of her bedroom for short periods to see her.

After the first national lockdown, when her children returned to school before the summer break, they both got sick with high temperatures and headaches. She believes they caught Covid and both have had ongoing post viral symptoms (headaches, rashes, nosebleeds). In October 2020 she was referred by her GP to a Long Covid clinic. Gerda found some of the advice on pacing helpful.

By the end of 2020 Gerda had started to improve slightly, her breathing was better, and she could do a little more about the house, but walking was still a struggle, and she got a wheelchair to aid mobility. This allowed her to participate more and have days out with the children. With the help of pacing, she can now cook and do more around the house and with the children and has started getting stronger in her yoga practice.

Being believed was a real problem and stress for Gerda, and she feels that it’s only after having an MRI scan that showed heart inflammation, pericarditis and decreased lung capacity that she has finally proved that she has Long Covid.

Gerda found it difficult to manage parenting while dealing with Long Covid. She feels this has improved with time.

I mean, my husband, my partner at that time, he took all the childcare on, so it was fortunate that somebody else, you know, that someone else could do that, and… yeah, it, I mean, that I think that was a really difficult, difficult because I mean, they were fine, they kind of tend, like tend to just get on with things. So, you know, if you ask [ex-partner] I think probably, and I think because it because it went on so long, it became normal to them, and, my son probably actually got a bit, got a bit impatient with the situation [laughs]. I can remember at the beginning when I couldn’t breathe and I was that, I was on the floor, I was struggling to breathe, my husband my partner was on the phone to 111 and my son was just like, “Can, can I play Fortnite, can I play Fortnite, Can I play Fortnite?” [Laughs]. And he was just using that opportunity, he was like, right, they’re distracted, I’ll have to use this opportunity to get what I want [laughs].

So, I mean, they just seem to, like, get on with it the kids, and I suppose it became a new, kind of, normal for them. They got used to, kind of, maybe coming in and just sitting with me and just doing the, the things like that and that would be, they still came to talk to me and sit in my bedroom, so it became a little bit of a hub, but they, you know, their caregiving was elsewhere. And it was interesting, it was interesting in a way for me because I would always being the one that does the cooking, the one that does the, the looking after the children, you know, taking them places and always wanted to do things like get them out of the house, “Let’s get out for a walk, go-, let’s go out and do this,” just to suddenly yeah, that’s all changed, so it was a very different, yeah, a different experience, and to just suddenly be taking a backseat, so there’s no, yeah, that that. that was just completely taken off me. I suppose because all I could focus on was a lot of [inaudible] just coping with what I was dealing with.

And I do feel like I as I’ve gradually got better, especially with my older son, I’ve had to like try to, kind of, regain some of that control over parenting back again, which yeah, that because they weren’t used to that as well. I think especially my, I suppose he’s at funny age where he’s just turned 13, and because I’ve had this backseat, it’s about yeah, I’ve had to, sort of, come back to parenting in that way, which has been a bit of a challenge as I because even though I appear well, maybe, you know, I still am just struggling quite a lot. Like I get I get quite bad headaches which I struggle with, and I suppose the one thing out of everything that is, takes up the most energy, and as much as I love them: it’s the children. And that was always the case. I remember talking to the Long Covid people team, about this, it was like the things where I felt worse afterwards, it was when I spent time with the children, because of the, I suppose my emotional energy, the physical energy that it took to kind of do things with them, so yeah. And even now because since August, since we split up, it was, it, we’ve, kind of-, we share-, the children go between us because we-, he only lives round the corner. Even now it’s, but, like, in some ways I’ve got the children more by myself now than I did have before, which is a different challenge because it’s, like, doing all the, all the caregiving but then I also have all the periods where I can be by myself as well, which I’m not used to, so [laughs].

Gerda was the main caregiver for her children. In time she got a wheelchair through the NHS, which allowed her to spend more time with them.

He, I mean, there was a time where he said-, because he was, he was basically trying to work at home and look after the children as well, because I was just, I couldn’t do anything, and he said that at one point he was taking them out to the park, and they were running around and… were a bit more breathlessness than they would normally be. And he had a cough for a while, my partner, but yeah, he didn’t, he didn’t get a fever or anything like, anything like that.

But yeah, it was, I mean, it was really difficult with the children because I couldn’t do, I couldn’t. I suppose I’m the main caregiver, I have been the main caregiver, and I couldn’t do anything with them, and over a time we were quite worried about-, well, I was worried about being near them because it was all so uncertain about what how you pass it and how much you can be near people and things, so yeah. I know for quite a long time when I was in the bed, the only thing my little girl probably was come in and just I just finger knitted with her because I couldn’t, [laughs] that’s the only thing we could do because I couldn’t really move, but I could lie down and…still...

And then towards the end of the year, probably about month seven, my breathing started to improve, and then I definitely could do, started to be able to do a little bit more around the house, but like, walking was, like, a really big problem for me. So, you know, I couldn’t take the children to school, and I couldn’t go out, you know, if I went out my husband had, my partner would take them out. I think on a couple of occasions, towards the end of that summer I got dragged into the car and I put a chair into the park so I could just sit, sit in the, you know, the sun, and the kids were there as well, and that was nice.

But that regarding like school runs and going out, like towards the beginning of 2021 I made the decision to get a wheelchair because I thought if this is continuing then, you know, I’m OK if I was still, I was all right, once the breathing had sort of got a little bit, eased a bit, then I thought if I, if I’m not moving, you know, but in order to actually go places and do things then, you know, yeah so I was, we hired a-, we got a wheelchair through the NHS and that was great because it meant that we could actually have days out with the children, and actually, my son who said, “There’s going to be no way I’m pushing out a wheelchair,” was actually the person who wanted to push it the most [laughs]. And it-, as I was using the wheelchair, I could get out and I think walk very short distances, but then he was in the wheelchair each time and my little girl was in the wheelchair, so they loved it [laughs]. They quite enjoyed that side of things. And that was quite nice because it gave me a little bit more, suddenly gave me a little bit more freedom.