Family experiences of Long Covid

I’ve had to go, I had to get a job so we needed some money just to sort of help tie us over and tick things over and things like that so I had to go out to work, which is fine but then that put stress on the family unit because then I have to leave Michelle with Vinnie to look after Vinnie so although Vinnie’s got Long Covid, Vinnie is still a toddler, he’s now four and that puts pressure on her in terms of her fatigue and then how that makes her feel and then, you know, everything has a knock on effect.

Yeah so originally when we got back I just got a job in a supermarket I just, anything I didn’t care what it was just a bit of money, I mean we weren’t desperate for money but just to, you know, help with things to tie over because obviously when you’re, we were living in a caravan and tent so we could live quite cheaply and we were living at my dad’s but that wasn’t ideal so we needed to rent somewhere because Vinnie was into everything and as much as we could stay, so I just got a job, just get some money.

So, it’s like I can only go back to work and negotiate hours and know what days I’m working if I have the childcare in place. So, the only thing we can do is hubby stays at home while I’m working and then we swap when he gets back, when I get back and, even now, like I had a day yesterday where I spent most of the morning in bed. I couldn’t move and, you know, I thought I thought I’d got rid of that. I thought that horrific pain, that horrific exhaustion because I mean I’m always I’m always tired. I always have pain somewhere or another but to that level where I can’t literally even lift my baby out of a cot. I can’t even sit up.

My husband he was he was sort of the girls were up and they were jumping all over him and trying get him. He put his head round after doing the morning routine to see if I’m up yet and he’s like, he didn’t even say anything and, when I went down, I made it up that lunchtime, he said, “I just put my head round and I thought, no, not today. She can’t do it.” Which is great that, you know, he was able to because he’s self-employed because, so you know he gets that flexibility there and I just I just think about all those people who might not have that luxury or that that flexibility. And I said to him, I said, “I’m supposed to be going back to work in September.”

Then, you know, again, the anxiety is building up where how are we going to manage with that because if we don’t have the nursery places, if we don’t, we can’t have him at home day and night, you know, while I’m at work and then I’m too exhausted to do anything else or I’m in too much pain. So, he then has to do the night shift at home as well, it’s like, working fifteen hours a week, I’m going to be, that’s not enough to keep a roof over our head and we’ve already been told by our landlord that we’ve got to look elsewhere. And it was hard enough before the pandemic to find a place that would allow you to rent with children. And that’s affordable, to be honest, because [city] is not the cheapest but he’s already said, “You guys need to look for somewhere.” And it’s, it hasn’t been easy. It hasn’t been easy to try and find somewhere and I thought, I can’t give up, because even though it’s fifteen hours a week, I can’t give that up because that’s that extra bit of income coming home but we can’t have him off work all the time because he he’ll only earn if he’s working.

So, after that, so during all of that time, the hospital admissions and just more unwell I am a single parent and so it’s just the two of us at home. I, I did a lot of really crazy juggling with work and [son] and hospital appointments which probably in retrospect wasn’t entirely sensible and I really should’ve taken a bit of time off work [laughs]. But somehow I managed to, to do it and it was in the middle of the pandemic I didn't want to not go to work because there’s a lot of pressure at work. So, I did a lot of juggling with running into the hospital and went back to work and back and forwards and so on. Quite stressful for me. But still I’ve managed to not miss any work days through all of that time.

You said that your husband has is not working anymore—

Yeah.

Can you tell me a little bit about that and the caring?

He lost... he... he was in the catering industry, so he lost his job during pandemic in a way, so when it was... well, he was kind of you know start looking going back to work, finding something, but then we had Covid in September and then start Samir started getting unwell, so we always needed... 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.

But it... you know he can’t go back to work as it is now, he needs to be... even if I do work from home sometimes, you know I don’t work every day in the office, because you're still working, you still have to be working, you know the work is great, I can... if I need to take a break, I can take a break, helping with whatever, or if I have any appointment online then you know I work from home, we can do it so I don’t need to take the day off or anything, but that someone always needs to be around him 24 hours a day.

You know I have a... I have a good job in a way that is enough to cover our needs, so that’s why I continue working and we see for how... how long we go. We are OK, I can’t complain too much particularly because there is nothing else we can do.

Oh yeah, because the heart symptoms, I can remember, not the... not the symptoms of anxiety and finding my work difficult, none of those, I just thought this is me getting older and finding September difficult; I think September for a teacher’s hard anyway, it always is like that, but I just thought, I must be getting older, this is getting harder. But it’s whenever that heart symptoms started, I just considered that a separate health issue for me, I never connected it with Covid, and it worried me because I did feel... honestly, I felt I was going drop of a heart attack, and there’s some family history of that happening, you know, so it was a bit worrying to say the least.

So school, now saying that, school were not very helpful. They were: one, what is wrong with you? Two, when are you coming back? Three, what is going on? And I couldn’t... I couldn’t understand it myself, I thought, I don’t know what’s going on, this is very bizarre. I went to the GP and they sent me to A&E for examinations, etc. etc. and everything was clear and I thought, OK; I think they looked upon me as, kind of, premenopausal, slightly hysterical woman is the way I felt they were talking to me, but then I began to think, maybe that’s what I am, [laughs]. So, you know, you, sort of, think, OK, maybe that’s just all it is and then the... so every two weeks or... I had to phone the doctor and take a sick claim and say to the doctor, “I don’t think I’m well,” and he would say, “Well, do you want another two weeks off?” and I said, “Well, I don’t know what I want, I need somebody me what I need to do,” but there was nobody to do that. So that was part of the very... that was, like, one of the worst periods of just not knowing what was wrong with me and wondering why I was feeling like that and not being able to explain to my work as to what was going on, you know?

The... the... the GP... there was one GP in particular who was very sympathetic on the line, and I actually said to him in November, “Do you think this could be Long Covid?” and he went, “No, no.” They were very dismissive of Long Covid at that stage because they didn’t know much about it, and he said, “Oh, no, you know, you were better, you were fine, and now this has happened to you,” and I said, “I know that but I...” Funnily enough I had heard via a friend that she had read a story about a lady who had recovered, been fine, gone back to school, another teacher, and then had to go off again within two weeks of going back to school and was diagnosed with Long Covid, and I told the doctor this and he went, “No, no, no, no.” So then I just was, like, then OK, it’s not that, I’ll get better, you know, surely I’ll get better in a few weeks. This... this is all on top of quite a cross, principal wondering what I was doing and was I just swinging the lathe, as it were, and taking time out when I shouldn’t be.

So yeah, so it wasn’t until the middle of December whenever occupational health phoned me regards... on behalf of school really, and he was talking to me and I said I think maybe I have Long Covid, and there was... he talked about it, he didn’t really say very much apart from record what I said, because he was working for school as it were, and he said, “Do you think you’ll be able to go back in January?” and I said, “Absolutely, I’m sure I’ll be all right,” [laugh] I was so convinced this will all go away, you know, it’ll be fine. I’m quite a positive person and I thought, no, it can’t go for much longer, you know, I’m over the heart thing now, it’ll all be grand—and it wasn’t, [laughs]. So that was where I was at in December. And then January, I had to phone school and say, “Look, I am not going to be back to at least Halloween,” oh, “or at least Easter” it’s just that gave me... whenever we’d agreed that, that gave me at least a couple of... the six weeks to just go, oh, thank goodness, that whole pressure of phoning your doctor, trying to persuade them that you were sick, feeling slightly guilty that maybe you weren’t really sick, all those psychological things that were going on you know, that that was the first, kind of, relief I got in January of feeling, I’m legitimately allowed to be off now for six weeks you know, and he put Long Covid on my form then.

And I wasn’t feeling very resilient myself. I was very stressed and we hadn’t really adjusted to the idea of this being a long term illness and needed to work out quite how to manage it and how to look after him and ended up having some time off sick myself because I felt I think I was at work the week before I went off sick and found that really hard to concentrate on my patients when I started crying and I had letters about patients with their bad diagnosis and things like that. I thought, I can’t be a doctor when I’m not able to handle it emotionally because of what’s going on at home, so I had some time off sick. And then I’ve gone back, but on reduced hours. So, and that’s a temporary solution and that’s going to have to, and we’re going to have to come up with some more permanent solution quite soon. And I don’t know what that solution is at the moment.

So, that’s, that’s quite a big impact for me as well as for [son] and so there’s a lot on my work when I wouldn't, I, I’ve turned down opportunities for different—for you know a step forward in my career and taking on more work it’s what I wanted to do. But only that, I’ve now had to kind of reduce what I was already doing. And if I do that on a long-term basis that will have a big financial impact as well. And I’m the sole wage earner. There’s no easy answers actually not sure what the answer is at the moment.

Well there is that you know, if he hadn’t been ill, I would’ve stepped up at work and taken on more responsibility and more hours, so you know, it would be so that more, more money would’ve come with that. So, it was stuff that I hadn’t accepted because of that. Now, I’m thinking that I need, I need to work half days because he, when he’s having a bad day, he can’t get to the kitchen to get food. So, he can’t actually really look after himself. So, if I, if I have a half day then that’s okay, I just leave something out for him and then we eat when I get back. But my long days are quite long. It’s I think it doesn't help him very much [laughs] if I’m out 12 or 14 hours and he’s not eating properly. And he’s just on his own all that time feeling so unwell and stressful for him and I think that wasn’t helping with his recovery anyway. So, at the moment I’m on a phased return to work to, I’m using up annual leave, so that I can have some half days, but that will run out at the end of the month [laughs]. Don’t know what we are going to do after that.

It's just yes, worry ‘cause I don't know what's happening and then just fatigue because I’m running back and forth. And I suppose that frustration for me is more that by the time I get in to do some of my work, I need to go off to another thing. My day, I'm a morning person, so my day doesn't start until then. So, I've just kind of had to like - actually Thursdays is the day, which is why this is good that we can talk now, Thursday is the day when I kind of succumb to – I’ve got time to myself, but I also need to use that time to do something that's not work, not cleaning, [inaudible] even if it's just an hour of just like, yes.

Have you had to make financial adjustments, or is that a source of anxiety in terms of the impact?

It's not to an extent, because I'd taken redundancy just before Covid and before I had my I was pregnant with our second child, and so I had plans to not have a huge income for a while whilst I was doing those things, but it got to the stage where it was going to be two years which it was literally to the day my son was born in February and that February was when we got Covid, two years later but that was when I was supposed to be really going for it with the work side. So then it's been from February to now it's been quite deflating because I haven't been able to do as much as I wanted to and then in one of the businesses that I do, I was gonna do it by myself but very conscious that time is limited so I’ve gone in on the business with some business partners which has then meant like the financial side of it, I'm now sharing too so it had an impact but to be honest I'm just glad I've got that flexibility and that I can do this. And we don't live you know we just have, we never waste money, we're not elaborate or anything like that anyway so it’s not been that we've had to adapt much.

But at the same time as all of this you can see inflation going up, just generally the cost of living so that's what we're kind of having to pay almost like a month at a time and just seeing what we're doing.

Yeah, so my husband has been amazing, he’s just been able to... he’s a [job title], so he has been able to delegate a bit, and he was half-managerial, so he’s been able to just look after my sons completely, because I can’t get [daughter] in the car and do the school run or go shopping, or do anything, you know? So, he’s just taken over their care 100%. Which I think he’s enjoyed bonding with them, but we’re very fortunate he was able to do that, and I really, you know, appreciate we’re in a privileged position and the majority of people I... I can’t... I dread to think how it would affect you know somebody who worked in a factory, and they were on a minimum wage, you know it’s just, yeah, really hard.

Our parents don’t help, they’re a bit old, but so they... you know, it’s just a different time in their lives, so it’s pretty much me and [husband]. We have had some friends helping after school and doing shared lifts and things as well, but he’s really just so lucky he’s been able to step away from work. He... he has to do some on-call and night work at the weekend, which was a bit tricky, but on the whole, he’s been around and really supportive. He’s done everything. He’s cooked, he’s cleaned, he’s... you know, he’s... he’s done everything I would do.

So I, after about two and half, two- and three-quarter months, I said to work, “I just cannot, can’t manage this.” So I went off sick and then when my, in fact, because thank goodness of the furlough scheme, I hadn’t used any of my sick time and I was able, I was eligible for three months sick in a year. So when I took that, and I worked part-time, I was, I used to be four days a week. And so I worked and used up all my sick pay and all my holiday, and then it got to April this year, and I was a bit like, “Shit, I’m gonna have to get work,” cos I’m a single parent of three kids who gets nothing off of my ex in any way. So I was like, “Shit, what am I gonna do?” and that was a big worry.

But then my work were amazing, and I just told them what, I said, “I just don’t think I can do,” I said, “I’m no better than I was when I gave up, so if I start trying to do what I was doing before that is just going not work.” I said, “I need something that’s really, I can’t concen-, I can’t concentrate, my short-term memory is appalling.” I, I write for a living, but I said, “I just don’t think I can do that.” I said, “I can, I’d be better verbally.” And so I said, “if there’s something like client surveys I could maybe help with, where I’m not having to-,” cos my normal job I’m having to advise senior executives of multiple companies about regulatory requirements and best practice for their annual reports, so it’s quite, some of it’s quite technical, and you have to keep a lot of information in your head and there’ve been lots of regulatory change while I’d been off as well. So all in all it was just overwhelming. I said, “I just, really I’m not up to that.” And my work, thank goodness, it happened to coincide with the time of year when there’s a big seasonal need for client surveys, so that was really good timing.

And then over time I gradually, gradually, gradually just managed to do a little tiny bit more, and a bit more, and I think my, I’ve still got massive cognitive issues, but they did improve enough, and my confidence helped, you know, improved as well. So I’ve gradually better, but I still can’t do my job as it was, and I can, I do three days a week now and it’s a kind of dumbed down version of my job. And it’s so hard because I don’t know myself what I can do and so, they certainly don’t. It’s incredibly difficult for employers as well as workers as well.

I guess it’s been tricky because she’s been off school so any time off, she obviously needs a parent to look after her, so then it... then it impacts on your... on my work or my husband’s work; we’ve had to kind of share the time off. So, my boss has been pretty flexible, I do not have a job where I can work from home [chuckles]. So that’s been quite difficult to manage. She’s been very flexible in trying to allow me to work from home at certain times when there’s been tasks that I can do at home. That’s not always an option, so my husband has had to take annual leave in order to look after our daughter, which then, that impacts on us being able to spend time as a family. Yeah, because it’s either using the annual leave or taking unpaid leave. So, we’re both in a position where to care for our child, either one of us would have to take unpaid leave. He can take annual leave to take care of her, I can’t in terms of contract, so I’m bound by my contract to be in, so I don’t have that same opportunity and flexibility around annual leave, so it has had to come from... from his annual leave.

Yeah, and what happens when his annual leave runs out?

Yeah, so eventually, if that’s the case, and it would... we would... one of us would have to look at taking unpaid leave and to take care of her, so any relapses in kind of chest infections or just a bad day, if she’s more fatigued than usual, there’s... there’s lots of different reasons why she could be off school. So yeah, but the only option we would be left with is... is unpaid leave, which opens up a whole new world of complications.

Is that something that is like a real threat at the moment, or are you trying not to think about it?

It could be a case of trying not to think about it. We are just starting... my husband is starting a new holiday year from April, so we’re a bit like, ‘oh, we made it, so you’re kind of floating again almost, we’ve got a new set of holiday entitlement to kind of get us through, but how long that lasts, I don’t know. So we’re kind of feeling OK about things at the minute, but who knows.

So I got a job in a supermarket initially and when, they were quite good in regards to I had to have conversations with them, like Vinnie’s got an appointment I’ve gotta go and come back they were fine or if I had to change a day or stuff like that but in the end, so Vinnie went into hospital didn’t he for a week and he got admitted for a week and it meant that I had two days off work and I told work the situation said look Vinnie’s been admitted to hospital I’m not going to be able to come into work and my manager messaged me and said no problem I’ll put it down as compassionate leave, I said really brilliant, thanks for that really appreciate it.

Payslip rolled round, hadn’t been paid for it I absolutely lost it basically, I just went into work and said like “is this a joke”, you know what I mean? I’ve been here every day throughout the pandemic I’ve never had a day off, you know I’m hard working I, you know, I give everything I, even, you know, even when I, you know, people were having days off because of isolation and all those, I said you know, that I’ve never had a day off for isolation I said, you know, I’ve kept positive I’ve, even when I hurt my, hurt myself because it was quite a physical, demanding job I was doing, I was lifting stuff off top shelves, so when I physically hurt myself I still didn’t have a day off, still come in because I thought there’s something I can do and I said “you’re not going to pay me because my son was in hospital?” And he said “oh I can’t”, I said “yes, you can I said you can choose to pay me, I’ve all the policies” he said “oh no” and I think he was being led by the Personnel manager when I kept throwing the policies back at him he didn’t, he didn’t budge even though I know he could have done and in the end I just, I just gave them my notice, I just said I’ve got my envelope here I’m leaving I’m not, I don’t want to stay working for a company like this, do you know what I mean, I said it’s shameful.

And at that point he then turned and said oh I can do this, I can do this and I was like no it’s too late you, you know, my son is my priority I’m not prepared to sacrifice that and if you’re not going to look after me as an employee in that regard then I’m just not interested like you’ve made me feel worthless I’m going. So with that I walked out of that in August last year, it might have been a bit earlier and I didn’t, I applied for lots of things working from home to try and make it easier but obviously everybody was working from home and everybody wanted a working from home job and it was really difficult but then I managed to get something with a company I used to work with before I was a teacher, so like 20 years ago and so now I work at home which is fantastic because it just gives me the flexibility to help out with getting Vinnie ready or helping Michelle.

But they also give me three days off a year for appointments, so I can book like a half day, so when we went to the [Hospital] I can book a half day and they honour that and, you know, they said that, you know, you get three days a year if you need to do this for parental consideration, I was just like fantastic, like I feel relieved that I haven’t got to stress so much about asking for time off all the time that it’s actually allocated and it’s sitting there if I need it.

Yeah I know, I just felt bad because I didn't know what to tell work why I wanted the, so I just sort of said, “I need to book this week off.” And I booked a couple more days the week after I—, ‘cos I didn't know what to tell my manager why I was taking this leave. So, in my head, it felt easier to say holiday and so I didn't have to explain the reason behind it, which is odd. I just, I think it’s working with males. I didn't feel comfortable explaining why I wanted to go off sick.

Is that because you thought it was a mental health problem rather than the Long Covid thing?

No, it’s a bizarre one. I do know why I didn't tell the males. I didn't want to seem weak if that makes sense ‘cos I work in such a male dominant workplace, I didn't want to come across as being weak or being different. I wanted to be seen as an equal, if that makes sense. And obviously, I don’t know if anybody else has been through the same thing ‘cos they haven’t, so I just, I didn't want to seem weak in front of a male dominant industry.

And how’s that worked going back then?

Well, the past couple of weeks have been, they’re definitely getting better. I’m definitely feeling a hell of a lot like myself now, definitely. I’ve, I think I had one bad day last week, but nothing, nothing compared to what I’ve been having.

So you don’t get the sense they’ve picked anything up then, or no-one’s said anything at work?

No. They, when I was at work and [sighs] I did have, I think it was three days where I tried to go to work thinking I was fine and I sort of, I sort of contained my tears, but they could quite clearly tell like a few snuck out and they sort of said, “Are you alright?” And the more they asked me I was alright, the more it sort of made it worse. So, they haven't really pushed anymore or asked me anymore about it.