Kate

Age at interview: 48

Brief Outline:

In October 2020, Kate started to feel a bit unwell. Her symptoms deteriorated and she describes continuing to remain unwell for months. Kate says it was “a tough time to be ill” and that she was “just not able to be the mum that I wanted to be.” Kate was interviewed in December 2021.

Kate is 48 and lives with her partner and 2 children. Ethnicity: White.

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In October 2020, Kate started to feel a bit unwell but says she didn’t have any of the Covid symptoms she was meant to be looking out for at the time and so didn’t go for a test. However, on day 10 she started to feel “really unwell.” Kate contacted her GP surgery and was advised to go for a Covid test, which turned out negative. Kate describes continuing to remain unwell “for months and months and months.”

Kate describes a whole range of symptoms such as fatigue, burning sensations on her back and shoulders and a “horrible taste” in her mouth which she continues to experience. Throughout this time, Kate describes not really believing she had had Covid because as a family they “hadn’t gone anywhere” during the lockdown period and had been “hyper careful.” Kate discovered online that other people were reporting similar symptoms to those she was experiencing and said it took several doctors to say “We think this is Long Covid.”

Kate says it was “a tough time to be ill” and that she was “just not able to be the mum that I wanted to be.” During this time she describes mostly lying in her bedroom and relying on her partner to deal with household duties. Her children were 7 and 18 at the time and she describes this as being “quite a challenge.” Home schooling was difficult for her younger son. Kate felt guilty about this and also guilty that she couldn’t help her older son with things like University visits. Tasks which used to be easy for Kate like doing the school run have become challenging and she says that although she used to be an organised person, her ‘brain fog’ now means that as a parent she’s “really lost the ability to organise myself in quite the same way.” She worries about the impact on her younger son of seeing her at home tired and needing to rest a lot of the time.

Kate says she now has to “pace” herself and prioritise how she uses her energy. She says she’s had to learn to be “more assertive” and to “stop and look after myself a bit more.” Despite still experiencing Long Covid symptoms, Kate describes feeling optimistic about the future and believes that things are improving.

Kate found the age gap between her young son and teenage son difficult to manage while dealing with Long Covid, as both children required different types of parenting.

But I suppose just thinking about the, the immediate impact on my family was well, yeah, I was spending most of my time just lying in my bedroom, not doing anything. My partner had to do all the work. I’ve got a seven-year-old and a eighteen-year-old but they’ve actually got very different needs. And although the eighteen-year-old is eighteen, he’s still at school. He’s, he’s doing a series of A Levels he’s got things like university visits that he, he should be doing at this time which I haven't been able to go and do with him.

So, the balance of having children of different ages was quite a challenge. The seven-year-old is very active. Loads of energy. Really bored of being at home. Not wanting to do any home schooling. All the problems that I think parents had had with the home schooling anyway. I had nothing to give it. I was trying to, but, but mostly I just felt guilty that he was not doing any school work. So, yeah, the, the age differences was a real challenge for me in terms of the guilt. I felt guilty in both situations, but for very different reasons.

School was, actually the school were really helpful. I’ve been really lucky with that. So, one of the big challenges on a day-to-day basis was just doing the school-run. So, that’s not difficult, normally. It’s just driving for five minutes. Parking on roads close to the school and then walking. But I couldn't do that for, I don't know maybe about five or six months after, after I got it all. And then we had, I had to start taking it back on because my partner was having to work a lot more. I think he was getting the fatigue from having to do everything. So I started to do the drive. But even just doing the drive to school was hard, so the school would come out and to collect my son from the car for me, which is just so helpful. I feel quite emotional thinking about it.

Just even walking the little bit to school was, was just impossible. I couldn't do it. And it meant that he could get back into some normality and that me as a mummy could take him to school again, which I hadn’t been able to do. And similarly, at the end of day, they would bring him out for me. So, that made a huge difference. School have been really, really great. Now, over a year into it now I am actually driving to school. I’m managing to park and I’m doing the walk. The walk is a lot shorter because he’s in a different part of the school. But, nevertheless, it looks normal and that, that just feels so nice to just be able to do it normally.

The other thing that I’ve really noticed with school though being a mum with Long Covid is the ‘brain fog’ that I struggle with just means that normally I’m really, really organised and you have to be with children for all sorts of different dates that come in from the school. I normally put things straight in the calendar and things that I’ve, I’ve really lost the ability to organise myself in quite the same way. My brain feels a lot slower. It doesn't process information anything like as quickly than I think it would’ve done before.

And I’m finding I’m forgetting lots of things. I sort of, I’m the parent that forgets to bring the guitar or the parent who forgets to send the reading book in, in the bag and silly things, but things that I used to pride myself on being organised about I feel like I’ve lost, at the moment, I’m not as good as I would’ve been. So, the day-to-day running, as a parent and thing like that, I feel like are slipping and that, yeah. But it’s alright. He’s at school and that’s what matters, but I’m very conscious I’m not, I’m not as good as I would’ve been. And we’ve missed things like I forgot the parents’ evening. I’ve got the parents’ evening date wrong. We turned up on the wrong day. Just little things like that.

Yeah…Then, there’s, there’s lots of things that it’s been difficult to do with Covid anyway, lots of the things that my son would’ve done like clubs, Beavers, swimming, that sort of thing that obviously haven't been on. But when they’ve come back in, I’ve been really keen to try and get my younger son in particular engaging back in those things again because he’s become very dependent on just using technology and just saddens me really just to see he’s not living the kind of active life that I would’ve done at his age. But that has been a pressure I put on myself to think, well, I must be able to get him to a swimming club in the evening, like to be able to get him to Beavers and all of that kind of thing takes a lot more planning than it would’ve done before.

A lot of pacing, a lot of thinking about how I’m using my energy. I’ve done a lot of thinking about, you know, where do I put my energy the most. What are my most important values in a way. And parenting is the highest, probably. So, that is getting more of my effort than most. But to my standards it’s still falling quite low compared to where I’d like it to be.

Kate thinks her son has started using language that he’s picked up from her. She says that he’s not the “happiest” child he was before Covid.

Some of the other things that I’ve noticed is that I wonder if any other people have noticed something similar. My seven-year-old uses a lot of language that I think, I wonder if he’s picked it up from me. So, at the moment, he’s talking a lot about being exhausted. Feeling tired and needing to rest. I don’t think I say it all that much, but, but it’s surprising to hear a seven-year-old use those kind of words. And so, he must have picked something up from the way that he sees me every day at home, obviously taking rest and sitting on the sofa. Yeah, so that sort of, that bothers me a bit. I don’t think he’s the happiest child that he was before Covid he was quite carefree and happy. And I don’t, I feel there’s more of a weight on him now. But it could just be developmentally appropriate. But it feels like something’s shifted.

Kate’s eldest son does not want to get vaccinated, which has caused some tension in the home.

My eldest son is a different challenge because he didn't believe initially that I had Long Covid. He just didn't really understand why I would have it. And he also refuses to have the vaccine; so that’s quite a challenge. So, I’m living in the house proof of why it’s a very good idea to have a vaccine and he just won’t. So, that’s caused quite a lot of arguments. I like to try and be reasonable and to explore his thinking around it. But at the end of the day, it’s really tough when I’ve got Long Covid and he’s around everywhere. He could potentially bring it back in the house again. So, that’s been a challenge as well. That’s an ongoing challenge because he’s very clear he doesn't want to get the vaccine under no circumstances.

So, around the time when I had it, I think after me, he got it. And he does, he didn't have it very badly. He was a bit rotten for about three days. So on the one hand he’s saying, ‘I know what it’s like. I’ll be absolutely fine. And if I catch it again then it’s not going to be…that’s what it’s going to be like. I’ve got immunity,’ he’ll argue that. Although it’s over a year ago now I think a lot of it’s to do with Twitter and other social media that he’s been picking up on. Some of the things he says to me sound quite conspiracy theory. Yeah, ideas that we try and argue about around it having toxins in and people getting heart problems so, I think it’s a health anxiety at the bottom of it. He’s very sure about it. There’s no shifting him on it at all. Yeah, that’s been really hard, actually.

Has it been quite divisive in the family?

Yes, it has because our family’s a bit more complicated because [oldest son] father doesn't live with us. So, he’s got a stepfather lives with us. And me and his stepfather scientists, essentially. That’s our background. And very, very for the vaccine and his dad—although he’s a nurse—is very clear that actually ‘No, you’re okay, you can get away with it. You've already had it. I don’t know why you’re worrying about it.’ So, that has caused an extra tension to do with the family dynamic anyway that was already there, different family ideas and values, but yeah it has sort of highlighted that. And it’s led to us saying things like, ‘Well look, if you really insist you’re not going to have it, you might have to go and live with your father.’ Which is the last thing actually as a parent, like a psychologist, I won’t actually say to him. But yeah, you get to a point and think, ‘This isn’t fair.’ You know, we don’t want it back in the house if we can help it. I certainly don’t want to get it again. You know, I was fit and healthy and running and things like that before it happened, so.

Kate tries to explain her illness to her youngest son on a scale of ‘how much Covid’ she has that day. About 15% would be fairly good, and 100% would be ‘full on poorly'.

Yes. We have, I’ve tried to talk to him about it. One of the ways that we’ve talked about it is sort of percentages of how much Covid mummy has today which is what we’re doing on the initial days. And every now and then, he’d say, “How much Covid have you got today, mummy?” And it seems to vary. But, at the moment, I’d say to him, I’d say, “It’s probably about 15%, [Son’s name].” So he knows that 100% would be like full on poorly. I’ve got it, but it’s at this really low level. And then sometimes if I’m obviously not feeling good and he sort of says, “How much have you got? Maybe about 19% he’d say, but it doesn't go above 20. So, he knows it’s in that lower section of, of whatever the scale is. And then occasionally, I think I might just say, I think it’s probably maybe a nine today and it’s good, you know, it’s definitely going in the right direction. We’ve sort of got that way of thinking about it. I don’t talk about it too much to him, but it’s his way of trying to understand what it is.
 
I have asked him. “What do you think, what do you think mummy’s illness is?” And he says, “You get tired and need to rest.” I think that’s the most that he knows about it. He hasn’t said any of the other symptoms. I don’t really talk about those. I guess he just sees me sitting a lot. Yeah, actually, that’s the main thing for him. I have said, sometimes the symptoms just get a little bit worse again if I just do a bit too much. So, mummy has to be a bit careful and make sure. And he seems okay with that. I’ve been out in the wheelchair a couple of times with him, and he’s accepted it alright. Has wanted to push the wheelchair and that sort of thing. Yeah, I mean he does, he was saying more initially, earlier on about, “We’ll be able to cycle to school one day, won’t we?” “Yeah, I’m sure we will, [Son’s name]”. But he hasn’t said that recently. I don’t know if he’s getting just used to how it is or maybe hadn't occurred to him to suggest it. Yeah, I think that’s, that’s what he knows about it. He does, he does kind of pat my arm and say, “You rest mummy. I know you need to rest.” He tries to be, yeah kind of supportive in his own way.