Family experiences of Long Covid

So, I mean I remember my daughter saying to me, I just want my dad back now. When, you know, she, she wanted to go to the park and play football and there’d be times when I thought she’s not really understood what I’m experiencing and then sometimes she just absolutely blows me away with how understanding and empathetic and perceptive she is of you know, where I’m up to and how tolerant she is of that and she sort of accepts there are things we can’t do now but, you know, she’ll say “Oh daddy, we will be able to do this when you’re better and, you know, I’m looking forward to this daddy” and she’s been remarkably resilient really [daughter],in terms of adapting to that. And I suppose I have to adapt my expectations of what it means to be, you know, a dad because, you know, I probably was the dad who was very active with my daughter, climbing mountains, lots of outdoors experiences and, and that’s all changed, you know, overnight really.

Yeah, and in terms of family life and what I found really difficult when I was feeling really sick and to be honest even now when I have a bit of a dip is not being able to the parent that I want to be. So, I just really try and find workarounds for that, so I’ve been getting my dad to teach my son to ride his bike. My husband might take my son out to do things so when I can be there, I’m there but when I can’t, I’m trying to find workarounds all the time so that so that he’s getting a fuller childhood. And something I feel really sad about actually that before the pandemic we would also be going out on day trips, I would take him on my own to London on the train, you know, we’d do all these exciting things, and I can’t really do that now unless we sort of really plan ahead and I have some help, and he doesn’t remember any of the stuff before the pandemic.

He’s 7 now but he was 5 when that started, just about to turn 6 and I’ll say, “Do you remember when we did this?” He’s like, “No, I don’t remember that.” So, I’m getting photos out saying, “I did take you to places, I did.” [laughs]. And actually that’s more of a challenge now that things are opening up again because whilst everything was shut down, I didn’t need to feel guilty because no-one else was doing anything but I’m now navigating almost a new challenge in how we run our family life because I want to take him to London to the Natural History Museum again but I’m frightened of getting on the train because of Covid and there’s only so much energy I can devote to doing that kind of thing if I’m also working and all these factors that just didn’t apply before.

It’s definitely affected the relationship with me. Before that, I was poorly, I did everything for them. And just little things like if they need somebody in the night, they don’t shout, mummy anymore, they shout daddy. I used to do every school run and everything that they needed, I, I did. And so, they don’t rely on me the same, which is really sad. And they always say, we could do this if mummy wasn’t poorly. If mummy wasn’t poorly. So, like their friends used to come for tea and they don’t come anymore. They’re the things what’s kind of important to them.

It has got a little bit better because I’ve got the wheelchair and as I’ve got a bit better, I can go, go in the wheelchair to somewhere. So, like my daughter’s nativity is coming up and I’ve told her I’m going to go whereas I’ve not been to anything like that for a long, long time. So, they’ve got used to grandparents and their dad and their aunties been in my shoes, really. They’ve they did really, really well. I’m really proud of ‘em. But surely it will—my little girl is really clinging to me, really, really clingy. And my little boy seems to have gone distant. That, that’s my observation of it.

How does that make you feel like as a mother?

Yeah, it, it’s heart-breaking. I’ve had some really tough, really, really tough times and I’ve had nightmares about it where my children are shouting “Help me, mummy. Help me.” And I can’t get to them. I think it’s all that you know, realisation. I’ve had lots of tears about it.

Watch me son in football matches and he’d come to tell me about his goal and I’d cry because I missed it, you never expect that you’re not gonna be there for em [gets upset]. Things have, and also for a lot of time, for the first few months, even first six months I’d say, I didn't even realise that I weren’t there for them because I was so poorly. When I went in hospital, in March, it was the entire easter holidays from school and a little bit more. And I was so numb to the fact that I weren’t there with my children and it’s only as I’ve got on some heart medication that’s kind of helped me brain to regain some cognition that I think, ‘Oh my God, where did they even go for the easter holidays? Who had them.’ Whereas normally, I, I would organise everything like if they went to my mum’s or me sisters. I think I was so out of their lives.’ It’s kind of, as it’s gone on I realise more what’s happened than when it was actually happening.

We were just about managing, I was just about managing, I I’d started driving again which was useful because I literally couldn’t go anywhere or do anything if I couldn’t drive because I was like I, I’m not safe to walk which is really alien to me because we live, we’ve moved so that we’re within walking distance of town so I can walk to town with [daughter], we can walk to the park, we can do all this. And so, I couldn’t, you know, do anything beyond kind of be in the garden with her and that was just kind of sitting and watching her rather than doing anything fun…

And then we had, what happened, we had a week off together in May which I in retrospect found very, very difficult because I wasn’t getting any breaks from either of them which sounds really horrible and makes me feel dreadful but I, like just the interaction is hard work and we kind of recognised that a bit and we were trying to kind of modify activities to be stuff that [daughter] would enjoy, that I could kind of enjoy her doing and like normally I would be out swimming every day in the river or the sea, we’d have been going out to parks and like loads of walks and like that’s just the kind of people we are, so it was really challenging to try and work out what on earth we could do. And so we did a couple of bits like we, we worked out that I could go, we could go swimming as a family because I could just kind of stand in the water and she could do loads of splashing and actually that was quite a manageable experience and we could go to the beach if [husband] was coming because he could drop us off literally on the beach and then he could go and park and do all the, like all of our usual stuff that we do just not quite, not, not really happening.

Yeah he’s, yes definitely, he’s always been really hands on and really he’s like I’ve yet to meet a child who doesn’t adore my husband like they just, they’re all fascinated by him because he’s just this big mad over grown child basically who’s really fun to be around and like really silly and, you know, used to be a PGL instructor and a Canoe Instructor like that’s just like babies literally just stare at him, it’s hilarious to watch them and they’re not, they’re not quite sure but they think, they’re like ‘we just need to watch this this person.’ But like I’ve literally yet to meet a small child who doesn’t think that my husband is the most fun person in the world which is probably quite true. Except my daughter who is absolutely Mummy centric and I was like but Dad’s, Daddy’s so much more fun than I am, I am so boring like structure in the right activities come to me, but everything else your Dad’s more fun.

So yeah they, but their relationship has improved is not-, like blossomed I think is probably the right word like before she’d have been really unhappy going out with him without me and it would have been a proper like slog for us both to get her to that point but now they, like they went out yesterday afternoon, just went to the beach together and had an ice cream and had a play and now she’ll settle more for him, not so much at bedtime but she, she now will a bit which she wouldn’t before. And, and like overnight she’ll still mostly call for me but she’ll, she’ll settle with him more readily than she would have done, so yeah, so I think, I think that has improved.

So, it’s been really hard it’s been quite challenging at times and it’s really tested our relationship to the absolute limit and it continues to do that. We, I still feel like we are on a rollercoaster of, of what we’re trying to manage and work through with, with Michelle’s illness and Vinnie’s illness, so if it’s not Michelle we’re dealing with in terms of how she’s feeling and the fact that she can’t walk or she’s extremely fatigued, it’s dealing with Vinnie and his endless appointments for neurology and asthma clinics and things like that so it, it’s just constant. And although they’re now getting support which in terms of diagnosis or treatment, as a person on the outside of that who is trying to help manage all of that there’s really nothing for me and I’ve said this to Michelle several times and said like for someone as a, as a partner of someone who has got Long Covid or as a parent of a child who’s got Long Covid there’s nothing, there’s nothing for them to help them cope with what they’re going through like and I feel, I often feel guilty because, you know, sometimes I’m tired, like I’m really exhausted but I don’t feel like I can say that or complain about that based on what they’re going through.

So yeah it has been really challenging like, you know, she, Michelle’s obviously in lots of Facebook groups and Long Covid groups and things like that and she often says oh, you know, this, this person just said that their partner’s walked out on them after a year of dealing with this and stuff like that and, you know, that’s the reality of this that it is that hard for that person and I, I feel that sometimes, I’ll, I would never do that I still, you know, that’s not part of my remit I’m here to support my family and my wife and get through this but there are times where it is horrific, it really is horrific. And the support network for, for me is, it just doesn’t exist, there’s just no acknowledgment of that at all really and that’s quite challenging at times.

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.

The sister that’s just above her is only like 19 months older [clears throat] she’s noticed her, a difference in her and she’s always, ‘Are you okay?’ ‘Do you need anything?’ And things like that. So, no, they, they all look out for each other. The younger one who is five, her and [older daughter] get on really well as well. They normally play together quite a lot and sometimes [older daughter]’s like, ‘I don’t feel like playing right now.’ She’s like, ‘Oh, okay then. Are you just going to rest.’ It’s like ‘Yes, I’m just going to rest’. So, yeah, I know it’s horrible.

So, the sibling relationships, have they altered at all, that dynamic?

I think the other two look out for her a lot more. They look after her a lot more. They look after her a lot more because they know obviously that she feels poorly quite a lot of the time. So and so, yeah, no they look after her, which is nice.

She’s... she’s been really good actually. She does understand, you know, she’s... she’s quite a mature 12-year-old, so she understands that sometimes we can’t do certain things, sometimes things take longer because she’s got up and... and not been having the greatest morning, but you know we might have to wait till the afternoon to go out and do something. Yeah, she’s... she’s very understanding, but underly... you know, there will always be that underlying, frustration I guess. But no, generally she is very understanding of her sister and you know she said, “Have you taken your tablet today? You need to make sure you take it,” almost like mothering her a little bit, you know, “you need to make sure you do this, and have you got your inhaler? We can’t go out if you haven't got your inhaler, you need to make sure you bring it with you.” So yeah, she... she has been great, but you just feel for her.

It’s just, it’s just things like that really and there is, there’s her sister as well it’s impacted her sister because obviously her sister worries about her it was very hard when she had Covid because she wanted that emotional support, you know, 16 year old wants to be near her mum and she had to sort of stay in her room and she resented Freya a little bit, just for a moment, natural feelings. But, you know, little sibling arguments and rivalry but and then the rest of the time she’s over, she over compensates like she, she taught her sister taught herself how to like crochet and sat with Freya and taught her to do that so Freya had something to do when she felt up to it at home so I think she takes a lot of responsibility and worries about her sister.

What about if you're not in school all the time, how’ve you been with your friends?

I don’t see them as much anymore. I talk to them on the phone and stuff but like I don’t really have the energy to go and see them.

So you probably wouldn't go after school to see them or on the weekends?

No.

OK, and I'm not sure if they would come over before Covid, but do they ever come over to see you?

Yeah, they do sometimes.

Yeah, do you feel like it’s affected your relationships with them?

I feel like it’s like putting me more away from them.

Yeah, in what way?

Like, I can't spend as much time with them anymore and like have friends.

Yeah, are they still doing all the things that they used to do?

Yeah.

Again like with being away from things, like school, I’ve, I mean like as I went to secondary school like while I’ve had Long Covid then it’s been like, it’s been a bit tough to like find my like group of friends and I have then they’ve drifted off into other people who for some reason don’t like me or whatever. So, then I’m quite struggling with friendships at the moment because of that.

Yeah, it’s really hard. With school have you not been in much at all, or have you been able to go in sometimes?

I mean I go off for like weeks at a time because of my Long Covid being so bad, and I think it is getting a bit worse at the moment, but it’s hard to tell because I can, episodes can range from like two days to two weeks.

Mainly the people that I didn’t really get along in primary school, or maybe year seven, I I don’t really tell them because I know they will just take the piss.

How would they take the piss?

They would just like, I mean say now, I go into school after being off for like 3 days, and like everyone just shouts at me like, “Where’ve you been, why were you off? What happened?”

Wow.

And, and they know that I’ve got Long Covid, but they don’t really care and, and they kind of like pick on me for it. So, like, like, “Oh you’re just trying to get off school,”

[sighs] I don’t know, that’s... it’s difficult. I mean, I think just having compassion and just understanding that it’s... that it’s really difficult and it’s a long-term thing that... that has an impact on your mood and... and everything, literally every part of my life has been impacted by this, whether other people realise it or not, you know? You know, even little things, like I had fallen out with a friend a few weeks ago and like I just haven't had the energy to... to put... I haven't been able to put energy into fixing that friendship because I’m just focusing on getting through the day and then... and that’s... so I feel like I’m losing friends because of this. 

I realised who my true friends are who they... who aren’t, some of them have just left and like... not left, but just haven't really been interested in like seeing me, like they would never... like it was always... if I wanted to see them it’s me that has to make plans, like they never ask like... some of them never ever ask to make plans with me anymore. Some of them are... well, a lot of them don't understand the anxiety, which even though they don't understand, some of them are still able to support me with it, but others literally just would like rather not be around it. But then on the other side of things it’s made some of my friendships a lot stronger because they've given so much support, so it’s just made us like grow closer, which has been really nice.

What about friends at school, how have they been?

My friends are completely fine with it. One of my friends has [condition] so we're both just like sharing stories of being in pain.

[Looks at mum] What? I’m not using names! That’s really fun, so yeah, we... we're very good at like just... they're all very used to the fact that we could like... all of my friends are very used to fact that like me and a couple of my other friends have a lot of medical problems and if we come in one day and just say, ‘hey, I've got 500 problems,’ I'm like, ‘OK, that’s nice to know’ so like, yeah, school and my friends are like completely fine with it, they don't mind—they're very... just like, ‘OK, sounds fun.’

I'm sure that must help though, having people to talk to that kind of get it?

Yeah, like they're all very accepting of like everything, so yeah, it’s very helpful unlike primary school, but you know.

Seeing friends/family, no, hardly. I don't have that sort of relationship with anyone anymore. Going out it's not one of these things I like to do now. I’d rather stay at home and watch something, a movie at home rather than interact with anyone. I don't know why, just one of those things. Probably I might do it again but not right now. Well, we have got like a chat group so we're always on there so that's a good thing. It’s not as if I need to go out and see them, I just phone them or I’ll go on a video call and that's it. Job done.

And it's been since Covid?

Yeah, yeah ‘cause I think everyone's a bit cautious with each other ‘cause it's in the back of your head. Every time you even meet someone, even if I'm talking to someone, I don't let them come too close to you or me then you’ve gotta just back off a bit and you're thinking I don't know where you've been sort of thing. I think it's with everyone. It's the same thing you just back off, go no and then everyone knows and we all do it, we all do it. We're about arm’s length basically then we talk but before that it's like really close. Yeah, it's just crazy. Things like that. That's always in the back of your mind, isn't it?

So, I normally take my daughter to nursery because I’m in the car because I need to drive, so my wife has to take her. If it’s a weekend she’s sometimes taken my daughter to work, which... because she does... because my wife is Head of rowing, it’s rowing activities and, you know, I’m sure the children like to see my daughter, but it’s... and it’s cute for my wife, it’s hugely inconvenient for her. So yeah, and it’s... there’s no real way of factoring it into your plans if on a given day... my wife’s described it as, you know, kind of, sometimes she effectively has to be a single parent, but then more actually, because she also feels like she has to look after me as well, so it’s, sort of, like a single parent and carer on these days, which is deeply unfair but... and then, you know, you get... and the weird situation, so it’s like ‘I need to not do that thing, which is useful now for you, so that I can be good tomorrow for when you need me to be able to look after my daughter, our daughter’, which obviously... my wife’s very open about it, you know, she’ll say, “I feel resentful or cross because I have to do the cooking and the washing up, and then do my work, whereas you have to go to bed,” and, you know, it’s fair enough really. And we have a very, in terms of communication, open relationship where we do talk to each other. Like, I mean... and it’s really hard, right? I can’t imagine what it must be like for people in other situations where there isn’t that level of understanding or communication going on.

Yeah, and that’s, I’ve got to be honest that’s in a context of people who love each other very dearly as well. It’s not like we, you know, we have a, my wife and I, you know, haven’t had a relationship that’s fraught or tense but, but this has certainly put, you know, a lot of pressure onto that and I mean part of that is because…in, in some ways it change, in some ways it changes everything, in some ways it changes, it changes nothing and that’s the, that’s, that’s what some people have helped me to understand is that, you know, the things that I’m able to do don’t change, you know, who I am as a person, what I’m able to contribute to our sort of family and our relationships and I think that’s been, that’s definitely been something that I’ve learnt, because probably in the past I have defined myself by the things that I’m able to do, You know, round the house, taking people places and all of a sudden when you can’t do those things you, you do question well what am I contributing here, you know, to, to our family and I suppose people helping me to understand that, you know, just being who I am and the love that I give in conversations that we have and so on that is, that’s enough in itself.

We’re quite good as a team. We’ve been through... or... this is totally off-topic, but just... just for context: my 12-year-old was hit by a car when she was four so we went through like a really traumatic time, and actually working through that, if you’d have asked me then, I would have said, ‘mm, well actually...’ but because that’s happened and we’ve had to kind of work together and we’ve had to do lots of different things to build, that actually this hasn’t had a strain on our relationship in a way, because we’re like, ‘right, we can do this,’ you know, ‘we... we got through that, that’s fine, you know this is just another kind of tick in the book,’ ‘let’s go,’ sort of thing [chuckles]. So actually I think it’s brought us together more as a family because we... we have to kind of discuss things more, we have to plan more, yeah. I don’t think there’s really... that’s... that’s a really boring answer, isn’t it? But no I don’t think there’s been any strain.