Harry

Before catching Covid in September 2021, Harry enjoyed many activities and sports. After catching Covid, he was not able to walk without help for three weeks. He gradually increased his walking until he could go back to school but doesn’t manage to take part in PE. He experiences tiredness and weak, achy legs. When he does too much or has another illness, he feels as unwell as when he first caught Covid. Harry was interviewed in April 2022.

Harry caught Covid in September 2021 and was very unwell for three weeks. Before this, Harry was very active, playing sports, music and going to Scouts. Since having Covid, he has not been able to do very much. He built up his walking to go back to school but still can’t join in with everything. He recently reduced his time in school so that he has enough energy for fun things too and to help him recover. Harry experiences tiredness, achy and weak legs, and sometimes can’t concentrate on things, which is frustrating for him.

At home, because both his parents have Long Covid, the family have had to adapt their activities. The family don’t go out as much because they are suffering from fatigue and are wary about catching Covid again. Harry has had to adapt the things he does with his friends because they would usually play sport or do physical activities together. He finds it difficult to explain this to others and doesn’t want to be different. At school his friends, and sometimes teachers, forget he can’t join in with sports. Watching people doing the things he used to enjoy has been really hard for Harry. He has returned to his music group and lessons again, but it is sport he misses most.

At first, Harry’s mum spoke to health professionals on the phone. She also did research and connected with Facebook groups to look for help. It took time between being referred and being seen, but Harry has seen a paediatrician and been referred to physiotherapy and a Paediatric Fatigue Clinic. The paediatrician advised reducing time at school so that Harry had energy left for fun activities. They advised Harry to think of his energy levels like a battery and how different activities take different amounts of energy out of the battery. This is helping Harry to manage his energy and balance his activities over all days of the week, rather than using all his energy on school days. Overall health professionals have been helpful and supportive. Harry finds it helpful to have a morning bath which has magnesium salts in it. This helps him feel ready for the day. He also takes vitamin supplements.

Harry would suggest the magnesium salts baths to others and wishes that people didn’t have to wait so long for appointments. He thinks there should be more information available about Long Covid as this would help other children to understand what is happening to them.

A paediatrician advised Harry to think about his energy levels in terms of a ‘battery’.

Age at interview 13

Harry: Yeah. ‘Cos she sort of gave the advice of cutting back the school days.

Interviewer: Yeah, okay. That’s good.

Mum: Why did she say that? What was the point of that?

Harry: Like the battery thing. So, like I have more like energy left in my battery to do sort of other things. So, it’s sort of levels it out, so I’m not doing like loads of activities during the week and then resting on the weekend. I’m sort of doing like things all the time. So, it’s not like a big difference over the different days of the week.

Interviewer: That sounds like a good way of thinking about it. It’s like almost how to manage your levels of energy.

Harry: Yeah.

Interviewer: And do you know when you’re getting tired? Does your body give you sort of signals of when you’re getting tired?

Harry: It’s mainly my legs that start aching.

Interviewer: Okay. Yeah and so what do you do when, when that happens?

Harry: I don’t know. I just, just stop doing stuff and just go and sit down or lie down.

Mum: What do we always say to you, what we always saying about your eyes?

Harry: I don't know.

Mum: You don’t know what we’re always saying. What do we say [laughs]?

Harry: I’ve grey stuff under my eyes.

Mum: We’re always telling you look, you look tired aren’t we?

Harry: Yeah.

Mum: ‘Cos we can always see it in your face, can’t we?

Harry: Yeah.

Interviewer: And I take it that’s something that wasn’t a thing before?

Mum: No. No. I mean with him you could always tell when he was ill, or he was going to be ill because you could see it in his eyes. And now we’ll see it maybe the end of the day. So, you have had friends over once or twice, haven't you. Do you wanna talk about that and sort of then how you felt afterwards?

Harry: Well, if I do sort of too much like I don't know just walk around a bit maybe like throw a ball to each other and stuff like that…I kind of feel alright during it. But then afterwards like the next day like I feel it more and I would get really tired and achy the next day.

Mum: Oh yeah, so he said sort of sleeping would be a blue activity. And then there’ll be green activities, which is like just sitting down and not even doing anything like not looking at a TV or anything like that, just sitting there, lying down. And then yellow activities would be like other playing with Lego and colouring and stuff like that. And then red activities was, so anything from watching TV upwards.

Interviewer: The walking and things like that?

Yeah.

Interviewer: And so was he trying to get you to sort of think about all of your activities and what they would—

Harry: Yeah. Yeah. About how many I’m doing a day. So I need to like, try and find some time to do yellow stuff and not do red stuff all day.

Interviewer: Have you been able, I know it’s not long since you had that appointment, but have you been able to use that information?

Harry: Yeah, I’ve done like a chart. So, I’m sort of doing two or three hours of yellow stuff a day.

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Harry used to do music and play lots of sports. He is thinking about reducing some lessons, such as PE, so he has energy for other things he enjoys, like music.

Age at interview 13

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

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Harry had heard of Long Covid before but didn’t think he would get it because he had heard that ‘children don’t get badly ill’ from Covid.

Age at interview 13

Well, it was before I had it. I’m not sure when, but I just thought like “Oh, not many people have it” and like, “I’ll never get Long Covid.” I didn't understand what it could be, like I thought it was just people that sort of had Covid for a long time and sort of, I don't know. They have to isolate for a long time. But then. I just, then when I got it, I realised it’s not that you actually have Covid, it’s just your symptoms last for a long time.

Yeah. And when you knew about it before, were you worried about it at all or did you just think—

Not really, I just, I just thought I’d, I’d never get it.

And what made you think you would never get it?

I don't know ‘cos I’ve heard stuff like children don’t get badly ill from it, stuff like that.

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