Family experiences of Long Covid

So one of the things I was struggling with at the time was even just making sure we were all eating properly and that there was food in the cupboard and things and so we went through some practical strategies for making sure that there was and now we pretty much have it nailed in that there’s always food in the freezer so if I’m having a bad week and it probably sounds to your average person like, ‘why would you need help with sorting that out?’ but at that point at time, I was so, feeling so poorly and had so much brain fog that even just preparing meals felt too much so that was really helpful.

And also, just talking about activity so I walk my son to and from school and about ways to kind of build activity into my daily life so that, so that my life with my family was prioritised and it wasn’t someone saying, “Right you’re going to have to go and cycle for five minutes every day, find time for that.”

So, we all, we all manage to eat together during the week. So, I, obviously I was off si-, sick and then for the last year I’ve been working remotely predominantly which means that I’m in the house, so we’ve really prioritised kind of sitting down to eat as a family in the evening. Whereas before if one was running late from work we wouldn’t or me and my husband would eat after my son was asleep but now we make sure that we eat properly and I know it sounds silly but I found that I’ve had to really re-think the way I run my life and we’ve also, for me, I find it really helpful to make more of the kind of bedtime routine with my son because that’s an opportunity for me to rest.

So, one of the things I have to do is make sure I build in rest time. But sitting and reading books with him, sitting with him at bedtime counts as part of my rest time. So, whereas as before it was always like, ‘just get this bedtime out of the way’ tonight it’s my turn and I think ‘it’s okay because actually that’s good because it’s a good, because it will make me have a rest and just kind of relax,’ so there are some positive things [laughs]. But yeah, we’ve had to rethink things like we, we we’ve always had a cleaner, very fortunate to have a cleaner because we’ve got busy lives but now, you know, I let my cleaner do a lot more stuff than I did before. I let things go around the house that I wouldn’t have done before. I really need to clean my windows, but, you know, what, I’m not going to bother, I’m not going to bother until they’re absolutely desperate. You know, just adjusting expectations I think as a family and with, and I also found that so I’ve gone back to working slightly less than I was before so that I can prioritise family life because for me if everything’s smooth at home, if my son is okay then I can put what energy I have into my work but I have to make sure that is sorted out first or it just doesn’t, it doesn’t work.

It’s really sad, because that’s what the, that’s not the people or the person I am now that I was back then would always be up for like hosting and tea and coffee parties or whatever. It kind of made us feel we were. And now it just feels like no-one ever comes to the house. Don’t have the energy to go places. We’ll only go if it’s local within, you know, a certain distance. After so long, we were invited to a wedding over the summer and my, my mother-in-law was like, “You’ve, you’ve declined so many invites, it might be good for you. It might be good for you.” I kid you not just trying to put my dress on, and you know, get ready. I just went and I thought, I want to come right back out. And I felt horrible, because so many people like we’ve not seen you. And we want to talk to you. I was like, “Just don’t want to be here.” And that’s family and close friends, you know. You think, God, if I can’t do this then oh dear.

We used to go on family walks. We used to do once a week we used to do family dinners. I say that, I did with in-laws. We kind of kind of live separately, but within one house. So, we are very independent, and I do my own, you know, everyday tasks and do what I need to and so does my in-laws. But once a week, we try and make a proper effort and the day my husband has off where we had family meals and then we’ll watch a documentary or play games. And that was lovely to kind of do that. But the way I was feeling, I couldn't even do that. I physically couldn't even think that okay, I need to make something extra. I need to work out, it needs to be on time. Let me just, you know, let’s just sit together as a family. That you would think is an everyday thing, right? Couldn't do it. Just didn't have the physical or mental ability to do it at the point where, I remember once there had been weeks and my husband said, “I’ll help you. We’ll do this together.”

Bless him, he really went over and beyond and tried to ask me where do things go? I guess the house. It was a huge thing for him, bless him. He got the kids to tidy, and I remember having a meltdown and he was like, “What’s wrong?” And I said, “I’ve lost so much of myself. It’s horrible. I don’t recognise myself.” I should find enjoyment in these things. Just putting a, it’s not even someone—it was literally from downstairs they were coming upstairs. And I said, “It’s like a baby step.” But it’s like I’d have breakdowns. And even to the point where my mother-in-law would see and say, “Honestly, there’s just no stress. There is no stress on you.” And I was like, “It’s not about on whether I find it stressful. It’s like this is something basic. If I’m cooking for five, I can cook for another two. Come on, that’s not rocket science.” If I’m unable to do that, I’m in a very, very scary place. So, yeah, that was horrible, absolutely horrible.

Then, can’t remember the last time we actually had a proper, proper family dinner. Yes, my mother-in-law’s been doing it. She’s been, she’s been cooking for the past few. And that guilt comes in, you know, where you think, I’m younger and I’ve got the energy and I should be able to do this and you’re much older than me and you’re putting this dress together and listen to the kids and make the noise and what have you. But I, I’m very, very lucky that I can be honest, and I can be, I can just say to her, “I don’t have the energy for it.” Or she’ll, bless her, she’ll just have to look at me and she’ll understand that right, is just not, not feeling it, so she wouldn't say anything. But it’s really upsetting because that’s one thing my husband really looks forward to. We don’t really sit together and have a family meal because of his work dynamic. So, that once a week well, again, not much to ask. He really looks forward to it, but it ends up being, I’m exerted and I’m really emotional. He just sometimes thinks, ‘I only ask for dinner. That’s not much.’ [Laughs]. But instantly, it, it, it’s too much for just that. Yeah, it’s scary, it’s scary how you think what is this? It’s not like I’m asking someone to run the marathon or anything. It, it’s horrible.

When I overdo it, that's it, I'm drained and I can't do nothing then and I have to just absolutely stop and just - I don't know, I've gotta take deep breaths. Okay, calm down. And I’ll literally just sit for hours and hours. That is one thing I'll do. It’s lucky no one in the home, in our house, says oh come on, get up, do some more work. They just see me and they’ll go, okay, just take it easy, just watch TV then. And that's what I do. Even today, I come back home feeling a bit tired, but not that tired like I was last week but yeah, just sit down.

Who takes care of things around the house or does things that you can't?

If I can't do it, then the boys are here. I mean, they're old enough, so they'll take care of it, it's not a problem and they do. They look and they go, no just sit down, we'll do it. That's it. So, we're alright. We're lucky that way.

Yeah, they were worried and stressed when they saw me like that and anxious. But we work together, and everyone were keeping an eye on me, and they were keep, asking me to have rest, more rest and don’t worry about this, that and other like that. So, that support was there.

Were they able to help around the house with things if you were unable to do it?

Yeah. Yeah. They, they were very able in terms of food, cooking or anything and helping out with washing and cleaning. So, they would decide “you don’t have to cook, and we’ll manage” kind of thing.

Are they good cooks?

Yeah [laughs]. The older one is very good cook [laughs]. Yeah.

How many, are there three boys?

Three boys, yeah.

So, one of them, two of them are good, one of them not so good or—

Yeah [laughs]. They’re all good in the sense but the older one likes cooking. So, he would cook and then other would make like anything maybe into sort of beans or beans on toast or frozen something. But they wouldn't have to worry, and they’ll make toastie or sandwiches or yeah. So, they don’t have to worry about sometimes I worry that, oh, having Indian food and they, they said,” it’s not important. You just rest and we can manage like. Why are you here in the kitchen?” That kind of thing [laughs]. But I’ve seen them doing sometimes takeaway or junk food and more cheese and all that [laughs] – convenience because they work as well and so I try to just do a little bit of it and then they do the rest, kind of thing.

He always needed someone to be around him because I am working full time already, it... we kind of always... OK, he’s unwell now, let’s wait, let’s wait, but then he needed even to drive me to school because it’s an hour drive, we... we couldn't send him by bus at that point, so then he was always on standby, take him to school, bring him back, but now he’s at home and you know he then ended up on a wheelchair, which is when you know, whereas when he was upstairs it was worst because we couldn't have the wheelchair upstairs, so he couldn't access the toilet, so now we have you know bathroom downstairs so he can access the toilet by himself basically and he’s more independent downstairs.

Well, we just need someone’s opinion and advice, we’ve never had to deal with something like this, you know and if they... you know I expect them to have experience with other people, other patients, not the... necessarily Long Covid, but in general, that they can say you know, ‘this might be good for you, you can access this.’ I only got the wheelchair because I saw other parents mentioning, ‘we got a wheelchair for the child,’ and I was like, ‘well, maybe it’s not a bad idea,’ but you would have thought you know the GP, if they're in contact, ask you, you know, ‘how are you... how is he getting on?’ or someone will tell you, you know, ‘well, actually it might be a good idea.’ Because when I told them, “He can’t walk, we can’t get him to the car,” they were like, “Well, you've got to,” and I said, “It’s not a solution, it’s not answer I'm looking for,”.

And then they... you know of course you get to the car park in the hospital and luckily there were wheelchairs so  we managed to grab a wheelchair and help him get in, but it was only when I was really discussing you know... or listen... reading to other parents’ stories and messages that it had kind of you know hit me that maybe we really need to get a wheelchair, but getting a wheelchair is you know you kind of have to mentally admit that you reached a point, you would expect someone else to guide you around it, so we... occupational therapist could come and tell you something, you know or this might be good, there are this can... like one of the mums said to me there are this bath boards, he can sit on it and... and because we don't have a shower, we only have a bath—so we can put a chair in the shower to... for him to shower himself...She said, “This is what I use because my daughter is...” so she uses this for her daughter, but then they said that it might be good for occupational therapist to come and measure because there are different types or something. So, I thought you know when they contacted one that someone will get in con... in touch with us and advise us of the best, or how... how to get it or something; I haven't heard from anybody.

So one of the things about sleep was we were trying to keep her bedroom just for sleep, but she shares it with her 14-year-old sister, so you know, it and then because I’m working, I’m working up in our bedroom today, so then this is the other place where she would come and she would sit on our bed and just listen to music or maybe do some crocheting or something, but then, you know, is she going to want to do that if I’m sitting here, you know? So that, what I mean, we’ve basically got what was a three-bedroomed house which we’ve, kind of, extended and converted a bit, but there’s seven of us living in it, there’s not much space, you know? and when part of what she needs is quiet and time to just, you know, kind of, properly relax, maybe meditate or whatever, it’s very hard to do it if you’ve got an eight-year-old bouncing up and down around you, you know?

Can you wake up someone to get you medication?

Normally I do what's it called, do that, but obviously everyone's sleeping because in my room, in my room there's like six bunkbeds there and I don't sleep there right now because obviously my asthma and it’s too closed up for me. So I just sleep either in the living room or in my mum's room. So yeah, I normally tell my mum to get me paracetamol and things like that, but if she's sleeping ‘cause she takes medicines but if she's sleeping, I'll try get up or like call one of my sisters, but if they don't pick up, then that means they're sleeping, obviously.

So, we’ve been quite lucky that there’s a downstairs room here. I moved into the downstairs room. But adaptations have been added to the house such as, grab rails around, plotted around the house, especially in the toilets and the bathroom. We are waiting for the banister to be re-installed because we don’t have the main banister. We’ve just got one on the wall which is quite dangerous for me. So, things that mum has been very acceptant of being changed around the house. Yeah. And I would, there is a toilet down here, but not in the bathroom. So, that logistically is, is hard. I have to wait for somebody to be home in order to have a proper shower because I have falls. So, we’ve been very lucky that was a ground, ground floor bedroom. But it’s just a bedroom and then a toilet and sink [laughs]. Yeah, you just have to reshuffle too much.

So, when you say the, the room downstairs was already a bedroom, rather than you making it into a bedroom.

Yeah, it’s more storage. There was a bed in there, but it was more storage. So, a lot of that had to be moved. You know, how houses just accumulate a lot of stuff. So, all of that had to be moved and then all of my stuff moved back in and once I had my own kitchenware, things like that. So, that all kind of went into the loft in the storage for we hoped one day when I can be independent again. Yeah. It’s, it’s a small house, so I have to kind of move my whole life back in again and that was a big task.

And was it the house you’d left? I mean, did that mean you didn't go back to your bedroom as it were?

Yeah, so I had been down on the ground floor before moving. So, yeah, it just felt like, it wasn’t my childhood room. But it just felt the room stepped backwards because I had planned on, I was saving actively to try and get my own place and you don’t expect to kind of be put back into your childhood home all over again. And so, there was a lot of emotions attached to that. And then, not only moving home, but not being able to do anything for yourself as well yeah.

So, it’s really different and I’ve had to get my head around that and so has my mum and my cousins and my friends because the logistics is so different. And, of course, our car and things like that wasn’t suited to fit a big electric wheelchair in [laughs]. So, practically things have had to change.

Yeah, so we’ve been lucky that an OT fitted the adaptations around the house. But I still haven't been given a referral for a wheelchair services, so I pay for the wheelchair hire at the moment. I changed that for quite a while and now I’m on PIP, which has been a huge help because that money just goes directly to the chair. And without the chair, I was literally stuck in the house because I couldn't get out on my own. So, it’s created such independence. In regards to cars I’ve just given up my car. I couldn't get out of a contract, so I had to keep paying for it. I’m very lucky I’ve had savings ‘coz I was working full-time. It was the same with my flat, I couldn't get out of flat for so long as that had to be paid for even though I wasn’t there. So, a lot of my savings that I’d worked hard for has gone on living. I say living, but I’m not using these things the flat I wasn’t living in, a car that I can’t drive [laughs].

So, we’re lucky that my chair can fit in mum’s boot, but she can’t lift it herself. So, quite often, she flags down somebody along the street to help lift it. But now we’re looking at a hoist and but that will cost more money and getting their wheelchair in and out of the house, I can’t do that on my own. So, we’re waiting for an OT referral, but it got rejected. I don't know why. So, my brothers have started working on the path, a path into the house. But that’s costing us money ‘cos we had a porch and the whole hedge had to be dug up and that was a lot of work because you can imagine how long that’s been there, the roots. So, yeah, things like that we just had to get on with if I wanted to be able to get out of the house. And we’ve been very lucky that I have my own savings, otherwise I’m not sure how we would’ve done a lot of what we’ve done so far.

English translation

‘It happened to me last year, end of December. This is how I got Corona. Wasn’t too much, I got a fever, and that fever was such that my whole body was shaking, and I felt very cold and then during this time, my health was very bad for two days, two or three days, then it settled down a bit, then I did some light housework. Then I would also get cold sweats, and dizziness. And when I was dizzy, I’d lie down. Then I’d do a little bit of work, I’d get dizzy, I’d lie down, and I was also pregnant then…Yes, I was also pregnant, and it was too much for me. Whatever I did, I needed to lie down. I’d get dizzy, my heart rate would go up. My health was very strange at that time. It was all very difficult. Then the tiredness was very high. I felt tired all the time. I still feel tired. I get tired a lot. This was not the case before.

Yes, yes indeed. I have two more children, and looking after then them, then being pregnant, then husband, then looking after the house, there was a lot going on. Even my husband used to say, “What has happened to you? You did not used to be not like this.”’

It’s for everyday things, the school run. The school run has really bothered me because you don’t realise how much you’re just in the know because you go to school and you know what’s happening. You know who they’re playing with. Such things like, if they’ve had a bump, bumped their head at school they tell the parent, the person who picks them up. I don’t know these things anymore about them. And so the really small things. We can’t go to any family gatherings because I can’t stand noise and lights. I’ve always, I’ve go to be sat down or in the wheelchair, which I find hard mentally really more than anything because I think, when I’m in the house I don’t notice as much that I can’t do the normal, I’m not a normal mum. If I go somewhere in, in the wheelchair and I realise how much I can’t do so we can’t like go to the zoo or the park. So, their dad does a lot of that bit, that sort of stuff with them now without me.

I’ll just tell you one more thing what’s been really, the children’s birthdays my son’s third birthday was while I were really poorly at the beginning and I were just in bed the whole day and not part of his day at all. So, he didn't have the party. He didn't have anybody visit the house, just his grandparents, whereas, normally, we’d have a party and their friends come and I’d make a really big occasion of their birthdays. And then my daughter’s birthday was in September, and I’d been really, really hoping that I could be part of their day. And I only managed the bare minimum. So, she had a bouncy castle in the garden I couldn't, I were too, I couldn't even get out of the house or anything on the day of the birthday, but I went I went outside and saw her on it and just talked to her whilst she was on it the day after her birthday. And I went downstairs while she opened her presents in the morning talked to her and saw that bit. But that just absolutely did me in. And then I was upstairs for the rest of the day. So, they were really tough times for all of us, I think. I think I felt it, I just got more guilt because it were their birthdays.

Yeah so I suppose that with [my daughter] there’s almost like two stages, when she was at her worst which was January, February, March, she was in bed all day, I had to syringe in Fortisip, I had to help her to the toilet, the room was dark she was crying all day, you know, I couldn’t leave her side because I was, she couldn’t move by herself so I just sat in a dark room with her. And my husband did everything else you know, so that, that was at it’s worst. And she would wake every two hours in the night so I would just read and research and sit with her and just kind of ride it out a bit. But now we’re in the recovery phase, we are suggesting things to help her get back into normal life so we’re not, we don’t really make her do anything because you can’t make anyone do anything but you kind of, we’re encouraging her to eat more and encouraging her to go outside and it’s a, it’s a really nice phase where we’re just building her back up.

So, we, her mobility has improved this week last week she was able to sit without help and this week she’s we’re still helping her walk, so again it’s, it’s quite the care burden is fairly high so one of us is always with her. And preparing all the food and getting her going supporting her with her school work and socially, hopefully, you know keeping her up beat with the challenges and trying to talk about things as they’re coming up in her mind, because she’s talking more about the future and things as well, so one of us is always there to sort of support her [laughs] in her recovery so we’re just lucky we can be flexible with what we’re doing and juggle it between us, but I think it would be really difficult if you were a single parent.

Obviously, I’m their mum. I’m their carer. If I wasn’t doing a good job, I want the people to you know, to help me. But thankfully, thankfully, I’m really lucky that I have that love and support and care and my children’s wellness is my number one priority and it’s not been affected as such. But I don’t have that energy for my children all the time and that’s an effect, that’s a huge effect. Now I’ve missed out immensely and I want to look at home more than I look at outside. We have a park just literally just two doors down and my kids are like we go to the park and there’ll be days when I’m like, I don’t have the energy for it. I don’t have a migraine then I have a backache and it’s not a backache then I have this. So can’t—and, and that’s me scary. If I can’t go two doors down and the park, literally I can see it from my garden then, you know, then yeah, that’s just not, it’s horrible.

Oh yes. Oh, I’ve heard it over conversation amongst themselves. We didn't disturb you because you know, you are resting. Mummy we didn't ask you for this because, because we know you might be tired. That’s not a conversation your children should be having with their mum like I mentioned. Yes, if I was mentally or medically exempt from anything and I said, yes, I have a condition that, that children and family would come round and go, okay, my mum suffers from x, y, z. But, no, but the kids, the kids are often like, oh, mummy, we didn't come and do this because you might be resting or you might be tired or yeah, it’s okay, we won’t you know, beg momma too much to take us up north to meet our cousins because it’s too much for her. I’m thinking, ‘Yeah that’s bless them. They’re lovely kids and they’re children are children and they just make, you know, make anything play, really with also with lockdown right.’

Yeah, and my husband tries to take them for walks on bikes and what have you. But only, I think yesterday that I actually finally took my, my daughter on her bike. I missed out so much. I didn't know she could go as far and as confident and the routes. I didn't know she knew all of that. So, I felt, that’s a lot of, that’s a big thing I’ve missed out on being able to know how confident they are outside because I just pretty much see them in and out of class. Yes, I am very lucky that I live with in-laws and they are a huge amount of help and my children are really happy. But I’m their mum. I want to be their mum. I want that. I want that mentally and physically be there for them. I don’t want to have to think going up to the park is a huge task for me. I don’t want to have to say, oh you know, let’s just pack a picnic and do something last minute, that’s going to cause me so much anxiety because I think just making a picnic doesn't exert me. I would pick the kids up. I would go to parks, put them to bed and then go and meet a friend. I have that. I used to have that. I no longer do.

English translation

‘This is what I used to do before. Let me tell you, I used to…masha-Allah, my in-laws have quite a big family. So, I used to have dinners almost every month, invite everyone, cook food. Now I can’t even cook much, you know? I mean, I just am not able to do many of those things, calling everyone, cooking for them. And then cleaning the house and then cooking the food. And then after they leave, cleaning again, washing everything. So now that I think about it, I find it very difficult. Before, I used to think, “how could I do all that?” Now when I think about it, I feel, “no.” Now I can’t. It’s like that.

Malaeka: I used to do swimming, and I used to do biking, and I'd go to after-school clubs, and other exercises, and like walking and running, and I also used to play football.

Zohaib: No, but like the one thing that I never get to do, because usually some... like every single night I usually go cycling with my family and stuff, every single evening, and then I couldn't go and because like I get tired, and like yeah, and body aches and stuff.

Lucy: I mean, like a couple of weeks ago, I tried to unload the dishwasher. I did it like half of the top of it, but I couldn't do anything else ‘cos it’s a lot of muscle work having to, you know, yeah. But I’m not excited for the chores to come back though.

Mum: Excited for the dog walks to come back [laughs]?

Lucy: I am excited for that, actually. I used to hate walking the dog. And ironically that’s when I found out I had Covid. I was complaining about going for a walk with the dog because I felt weird and I had Covid. But I used to hate them because I hated walking. But like when I was going into town everyone else was going on a walk with the dog. And I really wanted to go, but I knew I couldn't manage it because it was like a really, really long walk. But I’m excited to do stuff as a family like the family walks every Sunday again. I’m excited to do that.