Family experiences of Long Covid

Yeah, because you know like it’s... Long Covid has been the only thing I’ve really thought about for the last six months because it just impacts every single part of my life, whether it’s the fatigue, or whether it’s not being able to taste anything and not feeling motivated to eat, not feeling like I have the energy to out with my friends, you know it’s like the only thing I think about.

Yeah, that must be very, very difficult. So which of the symptoms would you say you've found most difficult? You've talked a bit about your taste and smell, what about your mind fog, can you describe what that’s like?

Yeah, so the... the chronic fatigue and the mind fog I would say has had the biggest impact on my day-to-day life because you know I can’t do the things that I used to be able to do. Like, I’ve had a lot of days off school because I just can’t... I can’t do it, and I’ve been struggling in school a bit more because of the mind fog and not... and not being able to focus in class, so it’s... and then obviously like not being able to go out with my friends, not being able to go to like netball club and stuff like that, and those things really help you know my mental health and help me feel really good, and then it obviously has an impact on my mental health and it’s like a spiral of just not feeling great.

Yeah, so I think generally it... the hard thing was that it was kind of like a spiral and that... you know, the chronic fatigue meant I couldn't do as much, which meant I couldn't do the things that I really enjoyed to do, and then it kind of just felt like... like I just wasn’t enjoying life anymore because I couldn't do the things that really... that really brought me joy, and that I was struggling in school, and I didn’t have the energy to go out with my friends, and it was just like you know I didn’t really feel like I had anything to look forward to because I didn’t know when it was going to end.

You know, and I think that was really difficult, and then having to take days off school and feeling like I was missing out on things with my friends, and opportunities...you know, things like that were really difficult and really had an impact on my quality of life and and how I felt about myself because I didn’t feel like myself anymore, you know I didn’t know how to... I didn’t even know who I was anymore.

Oh, as I said earlier, me not being in school because of being off ill, it’s affected my social skills and also like changed lots of my friendships that I was in, and I’ve come back and I’ve like, I may have interacted with this person, but I’ve fallen out with this person. And it’s been very wavy kind of, it’s like I’ll either have days where I’m completely fine socially, or like, or I come into school and I just don’t want to talk to anyone, whatever reason.

For me, it affects just around people now, I can’t get... I get like anxiety around people, kind of, being in crowds really, being in school I, kind of, get worried of people just anywhere, it’s not even in school, just going out to places do... I get worried really and that’s... that... that’s like... I think that’s not from just... not... it’s obviously not from the Long Covid, it’s not from the illness side of Long Covid, it’s from the mental effects of being, like, off school, not being around in those clubs where you're around people all the time, not being in school when you’re around people all the time. Not... you're being in bed, you're kind of isolated I guess as well, so it’s all those isolation you're going to get... as soon as you go back into that, it’s hard just to adjust again really, and it’s... I’m still finding it hard to adjust... get... going into school, going to see my friends again, it’s still hard for me to do that really and not really get nervous.

Yeah, it was one or the other. He didn't think it could be both. And I think the when the GP referred her to the paediatrician, she said, she said the same thing ‘I’m referring her. I think she’s either got depression or Long Covid ‘cos I don’t think anyone really realised that it could be both. It could be connected and that you can depression with Long Covid.

And so, your therapist, do they understand that it’s part of your Long Covid experience?

Yes. She knows that I like, with I have anxiety and it definitely heightened because of Covid and Long Covid. But I’ve, I’ve always really had anxiety. So, she’s helped with that. But she knows that like the depression kind of face of it is kind of based around the Long Covid. So, we trying to fix it [laughs]. I don’t know if that’s kind of the right term, but—

And what sorts of approaches is she doing? Is she trying to give you some practical ways of managing or is it just helpful to talk things through?

It’s very helpful to talk things through. I’m very comfortable with her. She’s a very good therapist. She’s really nice. She, she’s kind of found my way of dealing with things.

With... when I was talking to you earlier about doing... her doing PE lessons at school and swimming lessons and things, when she has a struggle and needs to go and take her inhaler, or she needs a rest break and things like that, when she comes home, it’s almost caused like an anxiety that she never used to have, where she’s...like she’ll share that she’s embarrassed that she has to have the rest breaks, that she can’t be the same as her peers when once she was, where she was able... you know, like it’s that age where she’s noticing that there’s a difference, and...especially swimming, that she really struggled, she was great at swimming, like real water baby sort of thing, and then she can’t even get like halfway across the pool, where she used to be able to do four lengths.

So, it’s that embarrassment as well. Like, ‘people are looking at me, people... people are laughing at me,’ I don’t... and I don’t think they are, they... you know, I’m pres... and I’m hoping they’re not, but it’s that internal impact on her mental health wellbeing [inaudible] and so although she had the impact to her lungs and... and there’s this and there’s that, you... you can’t necess... you're not... and we’re not getting a treatment plan for any mental health issues or no one’s really looking into her wellbeing and how that’s been affected. So yeah, great, we’ve got a problem with the lungs, here some medication let’s see if it fixes it, but you know as the time goes on, the more and more I’m noticing the impact on her mental health and wellbeing, that’s becoming a bit more of a worry. So, I just think it’s important to kind of raise that as well because Long Covid may not necessarily cover those kind of things because it’s... it’s a... it’s slightly different, but they’re mental health difficulties that have come as a result of the impact of Long Covid, so I do think that... yeah, that those kind of things... I don’t know, you know when you look at Long Covid clinics and services and things like that, that should definitely be part of those kind of services for people.

And...yeah, and...then he goes to me, he’ll take me on... I'll put you into a long-term clinic, a pain clinic or something, you know, which that still hasn't come, yeah, nothing’s come from there yet. Yeah, and I was feeling so weak, and I felt so like... and then also because I'm a mother and I'll see my... some of the children having long symptoms, I think mentally-wise that was pulling me more down as well, and it was very hard. It’s like I felt so useless and like no I'm not capable of doing something, because I wasn't well myself, I couldn't be there for my children, that I noticed as well, you know I just felt so bad as well that you know, and my kids are sick as well and I'm not able to look after them.

And everyone was trying their best, but obviously it was just not a very nice thing what happened. And yeah, and it was like the pains in the legs, and weakness was... even now and then I still get weakness, even now, and then the doctor goes and takes about a couple of months to get better, you know, it takes some time, and it depends on the person’s body, that’s what he told. So yeah, it was really hard coping with that. And I don't know if it’s relevant, if I should mention it or not, someone taking away a loved one from the Covid, that was like a big shock for us too, I mean I... you know.

That’s what I thought to be honest with you, what I thought when my family had a Covid, the kids, one by one each person fell ill and there was no one that... and then my husband, he was trying to look after everybody, and there were... yeah, and it was just like... you know. Yeah, oh, I don't know what else to say really. I mean this is what I personally felt because if you're mentally-wise strong, you can overcome anything, but then when... if you're getting sort of down from every aspect, from your kids and the husband, that sort of brings you down as well, dragging you down as well, mentally-wise as well and physically-wise. And even now and then sometimes I get breathless, and you know I feel weakness in the legs, and then seeing kids... because I think for a mother, her kids like... she always puts... even though we... with our self we put our kids first.

I think it’d be nice if yeah, if [older daughter] had someone to speak to that was perhaps going through the same thing. Whether she’d speak to them or not, I don't know. She is quite quiet. Maybe she could read something from somebody else that, so she knows that she’s not the only person that’s, you know, suffering with it. And yeah, I do think that there should be more support available for, especially the parents dealing with it because it does impact you quite a lot and it, it is very worrying more than anything.

I had to at that point say to Rosie, “Look, you know actually I haven’t quite, quite honest with you, you know, actually what, what we’ve done here is organise a, a performance for you to hopefully show that people love you and are rooting for you.” and so basically her, her, three of her friends from the dance school and then Lauren from Riverdance, basically performed a number of, of different steps for-, and that was great, and it really cheered her up and they played a couple of video messages.

I don’t know if this will mean anything to you, but I managed to get a video message from Michael Flatley who was the, was the original lead of Riverdance, and the woman who was his partner, Jean Butler, again, like real, proper, international superstars and Jean Butler, in particular, is someone who Rosie really has always looked up to because she’s a phenomenal, phenomenal, powerful dancer, really terrific and if... you know, well, Lauren described her as the First Lady of Irish dance, you know? So, so, that was great to get this kind of, and they, they did personal messages, you know, wishing her well and saying, you know-, and so that gave, that gave Rosie a real boost. And she was absolutely, I mean, we, we kept it, we were very tight with it, we kept to, like, 45 minutes, you know, that’s all it was.

She was absolutely busted afterwards, but happy, really happy; it was the first time we’d seen her smile, she just, she just cried and said, “Thank you Daddy,” you know, and I felt like I’d actually, actually managed to do something to help her for., you know, for a while. So, I think a combination of that and probably the antidepressants starting to kick in a bit made a bit of a difference in her mood, you know?

And what, we got a cat for them. We got two cats now. So, it’s like it’s a different activity now. So, they are after the cat all the time, you know. Running around with him. Playing with the cat. And it’s like giving them little, you know the mind is on different type like a different side, their mind is on different sides for the cat. They play with her all the time. Like a different, a different thing and maybe it’s their lifestyle is changing now. They’re taking the cat out in the garden. Bring him inside. Teaching him stuff. Playing with him. Making more fun and I think it’s their mind is in a different thing, like before, when they feel tired, oh, Tiger. We call him Tiger. Tiger is there, so they just after Tiger. They just sometimes they forget their pain.

Yeah, and he’s just after them all the time and, and he’s waiting all, all day, near the gate door. So, whenever they come he just, he’s so happy that they are here. He knows they, they going to give them treat. You know, one by one, he’s so clever. You know the cat’s there. He’s really clever. What he done, he go over to one of the, one of the child, he just stroke them and then they give him treat and he go to the next one, little child, but he give him treat. So, he’s after us for the treats, but he’s going around and around everybody’s giving him treats now. So, cat happy. My children is happy.

That’s very funny, yeah [laughs]. I think cats are very, very smart and they know how to get treats.

Yeah, yeah he knows and you know, my children they show him to raise a treat. And he, all day, he sits near the door. He knows that the treats are in there. Sometimes he starts opening the door that I need to take the treats out.

That’s very cute [laughs]. Do you think that having Tiger around has helped your children’s mental health?

Yes. It’s helping him, helping them a lot. Yeah.

How are they coping mentally do you think?

Because some of their mind is on there on Tiger and it’s like they do different thing. You know, sometimes it’s like I don’t prefer them to stay on the TV or playing the gadgets or go on the phone or go on the iPad, play the PlayStation. It’s like they’re naturally they are playing with the cat. Physically, they’re physically with the cat. They’re mentally with the cat like playing around like more socialising like, you know that as a, before they were socialising with their brother and sister, so now, in these days, they are as a, as a brother and sister, group wise, they are with the cat. And they are talking, they are talking with the cat. They are talking to the cat and it’s like you want this you want that and the children they are involving. I think, you know, some time we need to make changes in the, in the house, in the, in their lifestyle. You have to try. It’s like I, I tried, but I think it’s, it’s good for them.

Yes, it sounds really good for them. I agree. I think the change has probably been really good.

Yes, yeah. You know even me, you know, you know whenever I stroke my cat, he’s sitting with me next, all the time. So, when I were like stroking it was like releasing. You know, something is releasing from your body, releasing the stress. It’s like you feel calm, you know, after you, it’s like an animal, but it’s a main thing. It’s, it’s a part of our family now. Whenever I stroke the cat, I get stressed sometimes. I feel annoyed. So, whenever I catch my cat, I’ll stroke him and you know I feel really calm, really relaxed. It’s like cat is taking the stress, it’s the releasing of stress when you’re stroking the cat.

And there are other, there are other things which are positive, you know? Actually being involved in this, this study I think is something that she can say to herself, well look, it hasn’t made me feel any better but perhaps it’s going to help some other people, and that’s, that’s a good thing in itself. and one of, one of the things about resilience and emotional well-being, is doing things for other people is hugely important, you know, protective of mental health problems, so if she feels that she’s, she’s contributing something to the, to the wider body of knowledge or to helping train people, then that’s a good thing. And the other thing that she’s done, I helped her write a letter to the Education Minister in Northern Ireland, and the Health Minister, and to their respective committees in the Northern Ireland Assembly, and to the Youth Assembly here, we sent it to a couple of other places, I can’t remember, Barnardo's and a couple of other places, the Children's Commissioner, and just basically explained what Long Covid has done to her life.