Family experiences of Long Covid

So pre-Covid Freya was just a bubble of energy is probably the best way to describe her I’ve never met a child as fit and active as her, she just wanted to be involved in absolutely everything. Like I mentioned she was the captain at football, very confident as you can imagine to be captain you’ve got to have a bit of shout about you, quite feisty [laughs] but determined running up and down that pitch from, you know, to goal position to get back into defence and telling the rest of the team to do so. And so, a typical Saturday would be go to a football match, come home have a bit of dinner and then she’d go straight to company dancing for a few hours, sometimes even, you know, if they need to practice on a night so a full day of activities

Dancing mid-week, football practice mid-week full time school, come home from school and go out in the garden and kick the ball about, just non-stop energy, a bundle of energy pre-Covid. And at the minute she’s currently doing three days a week at school 10-12 that’s, that’s all she can really manage, she’s been still trying she’s, football it would absolutely break her heart if she didn’t see her team and the members, so she tries to go along to the matches some Saturdays and maybe subs for five/ten minutes but it’s such a struggle and she’s exhausted after. She, she’s never made training on a Monday because school she has Monday and by then she’s, if she’s done two hours at school there’s no way she could manage training.

And they still, you know, my daughter, she’s still getting the headaches. Sometimes she says, “Mummy, I feel really tired.” There was lots of fatigue afterwards. They give, my children, they are really active. We, as a family, we were really active people. Like we go for a walk every single day before the Covid. So, every week, every day, we would go for the walk for one hour. We do the cycling. We go to the gym. We go swimming. We do so many activities. But you know, after this we had Covid. We couldn't even like get up from the bed, it’s like, you know, when I finish my work it’s like I’ve died. My children, when they come back from school like tired. And it’s a fatigue. It’s like, it’s, it’s a really bad impact from the Covid we had as a family.

Yeah, I’m still taking them swimming. But you know, with the swimming they, they used to do the half an hour’s lesson every week. The teacher teach them swimming. So, now in these days, you know, they do the fifteen-minute swimming, they feel tired. And it’s like a taking them the walk and ten, fifteen minute we walk and then they start feeling tired. And you know, it’s like Covid it’s like they destroyed us really badly. It’s no small thing. It’s like the whole family, our lifestyle going to change. Our sleep going to change, like mood wise. You know the mood swings. They having sometimes anxiety. They are having sometimes anger. Usually, they had, they were really, really happy children. [siren in background]. So now in this, after the Covid they, Covid is finished, but still they, it’s some symptom inside, in their body like some time they get anxiety and sometimes they get the fatigue. Sometimes they get the headaches and it’s like I don't know when is everything going to go back to normal? It’s like it’s never ever going to be back to normal. They’re destroying us.

A big, a big change that Long Covid caused I think for us it’s a bit bigger, so my mum had a YouTube channel and we are really dedicated on posting videos onto YouTube, specifically during that Covid time because it was the only time we ever did it but we had to, we never, we had no new videos to post at all and resorted to, because we don’t want to just pause the channel we want it to grow eventually so we ended up resorting to making compilations of our old videos which was shocking even for us like we’ve never gone this low we have always had new recipes together we, and all of a sudden we’re just giving compilations just in an attempt to keep stuff running, so that was a big change for us. I think after a few weeks we decreased it from twice a week to once a week and one time we didn’t post at all and it was just really big for us because the channel’s a big team family project and it just went to this really low point, but after that stuff, stuff started picking up when my mum became better, once feeling better eventually.

Yeah and it as just like, like because we had a store of like recipes and all of a sudden they just kept decreasing and decreasing and there was nothing to post for like oh… and our mum was too sick but she was like just make a few compilations so we don’t want to have nothing posted, she was really worried about the channel she was like yeah we started it and we want it to like grow big, we can’t stop now, yeah.

Has your mum been able to get back to filming new recipes?

Yeah, she’s become more healthy and she’s able to stand up for longer periods of time but sometimes she has to sit down and take a break. But for her it’s more of a hobby she enjoys doing it, she doesn’t see it as like a chore or I have to do it she does it out of her own, she goes to my dad oh do you want do some recipes this weekend and go and buy this pineapple I saw on sale and we’ll make some pineapple recipes, at one point they bought a load of mangos and they made like five mango recipes in a day. But they enjoy it, it’s like a pass time.

I mean, I can probably still climb some small trees, but not stuff where you have to like properly pull yourself up the trees and stuff like that. I can sort of shoot in the net with the basketball, but not like run around and pass it and stuff. I can’t really do hockey [laughs] or scouts. And then we’re trying to see after the holidays when we’re in, we’re gonna start like reducing the school hours if I can go back to doing some music.

Oh yes, so she did... so she... she loves doing drama and she does a musical theatre class, so she had to miss that for quite a while because they... you know, they... they perform shows, only like little ones, which are really lovely, but she had to miss quite a lot of her lessons just from not being well enough to go, you know being on antibiotics, just not... no energy, and then... anyway, she... she finally started going back, which was great, it took its toll and she... she was like, “I’m going to do a show, I want to do the show, I want to do the show,” so this is like... like a little Christmas show, anyway, the teacher was like, “Do you think it’s a good idea,” you know, “I’m more than happy to have her in the show, we really want her to be part of it, it’ll be great, do you think she’ll manage?” and I was like, “No, I have no idea, but there’s only one way to find out, she really wants to do it, she’s resilient, we’ll give it a go.”

Anyway, she did do the show and there was a big... they did two shows, there’s like a morning one and... and an evening one, and in the evening one, she was just like swaying and this like scotch of children are altogether, and we could just see her like, ‘oh, she’s going to go’ [laughs]. So, they had to do... do a lot a little break and... and we had to take her outside and... yeah, so there’s... there’s loads of little things like that, that are funny stories now, but at the time I’m thinking, ‘oh my gosh’ Yeah, so she does that, she does this club, and you know she’s had to miss lots of that. Playdates with her friends has been another thing that she’s missed, she just... she’s shattered by the time she finishes school. She’s grumpy, who would want to play with anybody that grumpy [chuckles]. So yeah, she’s not been able to do playdates or anything like that so far that’s still kind of off the cards at the moment. But yeah, birthday parties, depending what the kind of activity is, depends on whether she can go or whether she participates for part of it and not the rest, but that in itself actually is quite complicated for an eight-year-old.

So, things like roller-skating parties that her friends are really into at the moment, she can maybe do 10 minutes out of the hour, and then watching your friends skate round having fun for the next 50 minutes sucks. So yeah, those kind of things I guess is... yeah, what she’s had to miss out of on over time.

So, I... before I used to do rugby and football. Rugby’s out of the question because it’s contact, that’s... I haven't done that at all since I’ve got it. Football, I’ve been doing a little bit, it’s less contact, but I’ve stopped doing that in the last few months, oh, I did, like, spells of training sessions with a few, but no, I haven't really been doing stuff like that, and they were the main things that I dropped because I was doing those quite a lot, every week, and even afterschool clubs as well, so I’ve dropped a lot of that stuff just because of how much it will drain my energy and it... it will make... it will definitely make me worse. When I was doing it was making me a lot worse the few days after I done it. I had the football training on the Thursday night and then the next few days and over the weekend I felt terrible, so I just made sure I just stopped doing that until... I’m hoping I can get back to doing that, but it depends how quickly I can recover, and I’ve already had it for a year and a bit now, so I don’t really know when I can get back to stuff like that.

I couldn't do like some sports. Like I could play... I couldn't play lots of cricket and stuff because... and I couldn't play some football, I couldn't play tennis, basketball all because of ... because... and I couldn't do my swimming classes as well.

Well, it sounds like you were really active as well before this.

Yeah, I was.

And equally, you know, I have the capacity to do... but, you know, unfortunately it’s not just physical things, it can be stressful things or just busy being busy and having lots to do. I can do one, kind of, external social interaction a week. Anymore, and it’s just too much with family life and my health, and, you know, previously who didn’t like seeing their friends? Like, I know it’s a different world now, post-Covid but, you know, that’s... that’s it, and often I would rather not have the social interaction so that I can be in better health to spend time with my daughter or wife.

Luckily I had a variety of interests before having Long Covid, so there is a lot I can do just sat down, but, you know, as a... someone who used to teach, I’m well aware of all the developmental things I’m missing with my daughter that she is getting from other places like nursery, or my wife, or when she goes out with my wife and my friends. But, you know, it’s deeply saddening seeing a picture of her on our friend’s shoulders out at a farm, than mine. So I’ve, kind of, had to learn to accept my limitations.

I’m very lucky but then socially, it’s really funny actually, my social life pretty much became talking to the mums at the school gate, so I really got a lot of strength from just seeing them in the morning and seeing them in the afternoon and not every day because my son does various clubs after school and after school club but that really kind of kept me going during the worst days. And actually they knew a lot more about what was happening to me than a lot of my other friends because I saw them every day, their kids were playing with my son and that was just so lovely and things have changed again because my son’s now gone into juniors at school which means that in the morning you literally just throw them at the gate and they go running in so I don’t see the mums as much and I do miss that but I have developed I would say over the last year some really nice friendships with those people who I come into contact with. It’s probably been much harder actually with the people that I was already friends with.

So I’ve got a couple of really good friends who have been great and really supportive but then I’ve got other friends who I’ve known since I had my son who’s perhaps a bit more sceptical about the whole Covid thing and wants life to go back to normal and we’ve perhaps a had a bit of a clash and people say thoughtless things like, ‘Oh, you know, we’ve got to learn to live with it like the flu,” and I’ll think ‘yes but that’s fine for you but my life will probably never go back to how it was before.’ I’ve had to, I’ve had a lot of kind of internal wranglings about whether friendships are working for me.

I think like...  so something my friends don’t necessarily understand is like you know that it’s a really long-term thing you know and I feel bad for like disappointing my friends when I have to cancel plans or something even though I went out with them a week ago on a day where I was feeling really good, and then I have to cancel another plan with them because I’m having a bad day, and I think... like I feel bad about you know disappointing them or letting them down, and I feel like sometimes they don’t really understand that you know there are good days and there are bad days, and it’s... I don’t know when it’s going to end, I don’t know when I’m going to feel better, so it could be going on for a really long time. Yeah.

Yeah, I think especially like at... at my age, like I don’t expect to be... to have to go to bed after a trip to the supermarket, you know? Like I... I want to be out with my friends and I want to be having fun, enjoying the sunshine but I just can’t.

Sometimes I’ll suggest to her that she has a quick nap if we’re going to go and do something. We went bowling at the weekend because she got star of the week at school. So that was very exciting. And they’d also got really good school reports. So, we treated them to that and they went bowling. But even something as simple as going bowling for an afternoon wipes her out. She kind of came home and she wrapped herself in a blanket and just lays on the sofa and like watches TV or something, but just lays there with no interest in anything else.

What about her friends networks and has she managed to keep up with friendships or have friends around the house or have there been changes there?

She’s got like one very close friend at school. But they don’t come round to play or anything very often. And they have said on Friday does she want to go to the Roller Disco. The Roller Disco is about like five o'clock, so she might be able to do it. She kind of said, ‘Can I let you know?’ Yeah. Yeah, she doesn't have, she doesn't have that many friends. She’s quite, she’s a really quiet child. Quite shy and that. She’s lovely, but she is really quiet. Her best friend [daughter’s friend] caught Covid at the same time as [older daughter]. So, they used to message each other on, on these little messenger platforms just to say, ‘How’re you feeling today?’ I think they’re both quite poorly with it, but [daughter’s friend] kind of bounced back a lot quicker than, than [older daughter] did. So, it was going round their classroom, unfortunately. They were all dropping with it.

Lucy: Well, let’s use my birthday as an example because we like doing stuff for birthdays and that. Like I wanted to go to this Titanic kind of, is it museum?

Mum: exhibition.

Lucy: Exhibition. But it’s walking around for an hour and a half.

Mum: It’s driving into London and then walking around.

Lucy: It’s driving into London and then walking around for an hour and a half and so I couldn't do that. And then I wanted to go horse riding – couldn't do that, probably like couldn't deal with that. It would be too tiring. So, we’ve kind of settled to go into an arcade which it still might be tiring, but—

Mum: I mean to be. We, we suggested all these things and Lucy put, decided she didn't feel like she could cope with it and didn't want the pay off afterwards, I think wasn’t it. It wasn’t like she would go, ‘Can I go horse riding.’ We were like, ‘No.’ [laughs].

Mum: Well. We used to go on walks with the dog every weekend, as a family. And we haven't done that for over a year, I don't think which is a shame. We just couldn't manage it.

Lucy: Which is quite ironic considering we went on a family walk when I found out I had Covid. I was just before, it was when I was having my symptoms. We didn't know.

Mum: Yeah, I mean I’m not sure you’re too upset about that [laughs]. Cos you were never that keen on coming were you.

Lucy: I’m not keen on walking and so it was kind of a blessing in disguise. But it has more of a backlash than, you know.

Mum: Yeah. I guess it just means that we have to consider everything that we wanna do together. For example, going on holiday this year and it, thinking about what we can, we do. Manage and so that Lucy still has fun, but it’s not too much for her. We probably adjusted the idea of what we would do for, for our holiday because of what Lucy is going through.

Lucy: Yeah.

Mum: Last year, we went to where was it where we went to? I can’t remember. We, we decided to get Lucy a wheelchair in case like so that she could still enjoy stuff and spend a bit longer out with us. But she absolutely hated it and refused to go in it [laughs].

Lucy: I have very bad social anxiety and I, it also, it felt weird.

Interviewer: So, have you used them much or have you not found that helpful?

Mum: Oh we hired it. We hired it for the weekend. She didn't use it. We took it back [laughs].

Lucy: But, yeah, on that holiday, I was quite, I was really depressed on that holiday probably because I couldn't do stuff that we could usually do anyway as a family on holiday. —

Mum: Yeah, we used to be quite active doing things, seeing things.

Lucy: We’d go on walks everywhere and we do stuff. I didn't really tell them until after the holiday that I was really depressed. They did walk on me crying once. But yeah.

Mum: You worry about upsetting everyone else, don’t you.

Lucy: Yeah, I worry about upsetting everyone else. I kind of kept it to myself until after the holiday and then I told them.

Interviewer: When you say affecting everybody else, you mean affecting everybody in your family, your mum and your dad and your brother and sister?

Lucy: I didn't, it’s supposed to be a holiday. It’s supposed to be nice. I didn't wanna bring everyone down and you know, yeah, it sucked, definitely.

Interviewer: And now in your family life have you all just adjusted to thinking that this is the new normal for now?

Lucy: I mean, sometimes we have those little things where we kind of forget what I can do. But all in all, we definitely kind of adjusted certain things, yeah.

So, me as a character, I come from a large family. When I married and came into [city], I was instantly introduced to a lot of women and families I was always sociable. If I wasn’t doing a bake-off then I was org, organising mother and toddlers. If I wasn’t doing that then I was already doing home schoolers. You know, we were all organising sports and days out. If we wasn’t doing that there was always something going on. In my own personal life with my family being married and organising this and that. And again, I was always one of those people who would be at the forefront with the most energy, rock up, turn up, organise, do a lot, I would exert myself, but that’s something I found a lot of pride in. But, you know, rewind back two years and I, of course, also bear in mind lockdown which, which affected everyone.

I lost myself. I’m no longer that person who had that drive and energy to think, to fulfil. Even just last week, I said to my sister, I really want to come and meet you up north and she said, “Oh, don’t, don’t put yourself out.” And I’d think, ‘Oh god, she’s right. She’s right.’ I can’t even have a couple of hour’s drive down because she’ll know I’ll just be completely out of it and won’t be able to do anything. And I thought, ‘God, how sad is that? How sad is that that I can’t, I can’t even do it.’ In my head, I want to because yes, in, in my head I’m the same [name]. But physically, I’m unable to do it. I can just about manage an hour’s drive down which I’d get there to my mums and I’d require a nap, some peace time then get up and go forward. But again, when you speak to your doctor, your doctor doesn't, you know, medical exempt you from you suffer from x, y, z, therefore you require. I don’t take any medications. I don’t have any medical exempt certificate or form. None of it.

In my head, I’m a healthy, young woman, but I have no energy. So, I missed that quite a lot. I missed on a lot of gatherings and meet ups and organising things and a lot of big chunks of myself because that was who I was. I was a very community led person. Volunteering, do you need me on there? I’ll do things and that’s just resorted to me pretty much do my bare essentials. I pick and drop my kids. I try to spend the time I can with them. And outside of that, I don’t do anything which in itself can lead to depression and, and anxiety and an awful place to be in it’s not very nice. And it’s affected my relationship with my children. And I would say, I don’t know if it’s, mum, mum guilt. They seem to be excellent lovely, lovely children. I often, you know, get told, the kids are well behaved. They were lovely. They were mingling. I don’t see any negative impact on your children.

But one good thing was that [son] who is middle one, he took me to Lisbon, April time.

Wow.

Yeah, it was so nice. That gave me a break and that, that I never had in my life that kind of break. But was going alone and usually he would go with his friends and this time he was going alone. And he said to my mum, “I’m going.” And I said, “Oh with your friends?” And he goes “No, alone.” I say, “Eh, why you going alone? Take me.” And he said, “Yeah.” So, I said “The sun was rising today from different….” And he just said, “My word, please take me.” He goes, “Only if you don’t give me hard time [laughs]” I said, “I’ll keep my mouth shut.” [Laughs]. He goes, “Don’t do this, that and other like silly things.” I said, “I won’t do anything. I’ll just follow you. I won’t say anything.” [laughs]. You know, four days was nice. He didn't talk much, but he did talk a little bit. We spent time together [laughs]. And whenever he came back, I said, “How much do I owe you?” It was not about money, but I didn't want him to feel out of pocket. He goes “Nothing.” “Oh, that’s nice. Thank you.” Before Mother’s Day you giving me gifts. It was nice.

That sounds amazing. Yeah.

And I would never have imagined, imagined that, his name is [son]. [Son] would spend time with me like this.

Yeah.

Yeah, so that was nice thing. So, I didn't feel stuck but my husband goes “Why you going?” I said, “You can’t take time off.” Mine is, I already had to take so many days that I’ve been asked by my manager, “Take days off. Take days off.” You know I was, “I need to take hours off.” So, I took the time and I’m allowed to take any time and so it’s fine. And you always wait for this, that and other, and by that time, [son] will change his mind and so I didn't want to wait for that change that he can change mind. I’d rather just go with him.

We do the most, you know, the most holy book, they read the holy book every day with a teacher, online, we usually used to go to the mosque to do their pray in the mosque. So now, they’re doing due to the Covid, we start online. So, they do the Zoom now. So, before it was okay. After the Covid, it’s like everything has changed. And now, I’m trying to bring those activities back that take them to the mosque. And it’s like when you go there, it’s two hours. So, after school, even after, because before the Covid they were okay. But Covid had—they go school, six hour and they come back, if they got two hours mosque is too much for them. So, we’re stuck now. That’s why we do the online for half an hour.

And how do you feel about that?

It’s not nice, really. You know, it’s like as a parent, as a Muslim we should go to the mosque and do the prayer there and do the holy book there. And it’s a proper way they teach face-to-face. You understand, when we do the like as an instructor, any activity, when you do the online, it’s different. When you do it face-to-face activity and so it’s different. We can feel more. Understand more.

And they can be with other people?

Yeah, they believe that the people are socialising and talking with their friends, making friends and it’s a different environment. It’s like a purpose, you know, they’re seeing their friends. They are going in a mosque and see their friends and pray. They read the holy book. It’s good. I prefer going in a mosque to the being online.

Well, we can’t go to the park. We... we stopped swimming. You know we used to do... we used to regular swimmings, but just the general kind of where... to go out: bike rides, take dog for a walk, just go to the park, he just couldn't do it. And it was... children and my husband are all Muslim, there was Eid celebration, we would often go out somewhere, we can’t go out, so you are you know you think twice... you know, you don’t really want to take the other two out, my two children, somewhere, because you then feel it’s unfair, it’s like you know the summer coming up: going to be here. You know but... I don’t know, it’s still two month, I’m hoping you know his chest pains will get better if he would be then able to be outside, at least go to the park, we could go somewhere, you know we used to go UK places for a day, seaside or somewhere: you can’t do that.

And then, for example, my, my cousin was getting married the other weekend and I didn’t go because I wasn’t, I didn’t want to be around lots of people because I was worried about the risk of Covid but also, because I knew that during term time I would really struggle to do my work, have my son at school with the various activities that he does after school and all the things, spend the weekend away and then come back and work again, it just wasn’t going to work. And so that was, that was just a real shame but just how it, how it is unfortunately.

I would, I was on a choir with a lot of singing. You know, we went to the prisons and did a lot of praying. We, we were quite involved in the community. As for me, it’s mostly Zoom. I’ve, I’ve been four times since church has re-opened. And, and what happened the last time we’ve come to the decision that it’s best I just stay on Zoom for now. It’s taking too much energy. ‘Cos you have to think it’s not just being attending, you’ve gotta think of someone’s journey. You’ve gotta get up in the morning. Make sure you’re feeling okay. Make sure your temperature’s okay. Make sure you’ve had all your medication and eaten and then slowly get dressed. You know, so it’s not just a matter of ‘oh, I could just jump up now and go.’

Yeah, you know, I don’t go to restaurants. As I said, the family was quite tight, you know, and adult children, you know, celebrating, celebrating milestones in their lives. Anniversaries, wedding anniversaries and things like that. It’s, it’s in fact, what’s happened now, it’s all come to me. It’s, instead of everyone going to restaurants and that now because they don’t wanna miss me, they all come to me. It’s all done here now which is a good thing so I can just sneak out of the room because it gets overwhelming [laughs]. So, I can just be here, but vanish, yeah.

One of my daughter’s hit the big 40 the other day. And, you know, instead of me missing it, they brought everything here and they cut the cake and everything here. It was brilliant and they went and partied after, so that was fine [laughs].