Long Covid in Adults

I was really noise sensitive, which is obviously ideal when you’ve got a three year old and a five year old [laughs], who were then getting better at that point. You know, you also when you’re ill don’t have the option of not parenting because that option doesn’t exist. So I’m still trying to do things with them and keep them happy and craft and this and that. And what…and it was just really difficult with the noise. The kids probably got shouted at quite a lot during that period from me, because…disproportionately to how I would normally be. Because to me they felt so loud.

I’ve got a great relationship with him… he's changed my life, that wee boy, to be honest. It’s been bittersweet, because I’ve got this brilliant wee boy that I love so much, but it’s the first couple of years of his life, I just feel like I’ve not fully enjoyed it because of this, kind of hanging over me this last year. It’s, it just kind of puts a burden on things, like when I'm taking him out, I think to myself, right, if I go and do this with him, is it going to, am I going to pay for it later, or tomorrow, when I feel rubbish again.

So if you look at the time when we were first sitting with it and the emphasis wasn’t so much on airborne stuff, it was all on cleaning down door handles and light switches and washing towels and all this kind of stuff. And at that time, me and my son were trying not to give it to my husband, so we were trying to do isolation within the house as well. And you know what it means in practice is a whole bunch of housework, extra housework, when you’re not feeling well [laughs]. You know, it’s like I can understand why it’s good advice but, you know, it’s not going to help the people who have it. And if you want to take a guess at predominantly who those people will be that are washing the light switches the most, they’ll be women, won’t they? And we know that it’s mostly women who are taking up the burden of home schooling. And that was happening maybe more so in the second wave of it. So, I think there’s a whole bunch of kind of like societal issues which are not helping with those experiences of long Covid.

And there’s probably a whole set of expectations about what women should be doing which is maybe not helping with…like I think it’s really hard to rest and it was almost impossible for me to rest with the whole home-schooling thing. Like, my husband was saying, “You know, I can do it.” And he was, he was doing…we were trying to divide it up equally. But I was just not in a head space where there was a really responsible role as a parent being asked of me and like I couldn’t not do that.

And it’s hard for the kids to understand. I do feel for the kids, because they have things like, can we have friends over – yes, but you have to stay outside. But they're allowed to go into other people’s houses, but they're not allowed to come in our house. We do have the excuse of, Dad’s working from home, so obviously if Dad is working, you have to stay outside. But it’s just that risk factor. And if they're going round to a friend’s house, well I don’t really want to let them go to someone else’s house, and no harm to them, I mean, they're in the class with them, all day. And it’s just, it’s trying to make sense of what’s the right thing to do for them. But it’s hard. Can I have a sleepover – no, you can’t have a sleepover. Can we go to soft play – no, you can’t go to soft play. It’s just, there seems to be a line for us of what’s risk that we will take, and what’s risk that we won’t take. But the kids find it hard to understand.

And how much of a change is that for you, would you have said, before COVID, were you kind of a risk averse sort of person, or…?

No, no, not at all, no.

…is this something new?

Oh yeah, this is completely new. No, we just did everything, I always sort of encouraged my kids to take risks, climb trees, try and swim in the sea, go and try and swim in the sea, it’ll be fine, and if it’s not fine, you know, we’ll find a way out of it. Very much tried to encourage them to do things on their own, and yeah, I'm not a risk averse sort of person, at all. Yeah.

So it must be hard to be going through that change, it must be quite, almost like a conflict, in a way, to kind of always be trying to work that out.

Yeah, because the automatic first answer to everything is, no, we can’t do that. And then you have to rationalise it, well is it, how much of a risk is it, will we do it, are we willing to take that risk, is it worth that risk. It’s exhausting, and it’s with everything all the time. My son, my youngest son needed new plimsoles for school, so on Saturday, come on, we'd better go and get them, and we arrived at the [shopping centre], and it was so busy. And I'm sitting in the car going, am I going to get out of the car – yes he needs plimsoles. Do I want to get out of the car – absolutely, I do not want to go in amongst all those people, because they're not wearing masks. And even when you get out of the car, and, oh mum, it’s really busy, and I'm saying, yeah, but we need to go and get your plimsoles, and we need to go quickly, and we’re going to keep our masks on outside, and we’re going to rush into this shop, and then rush back home again. It is exhausting.

I think I am definitely trying to protect them a bit. I also try to be honest. I think it’s harder, you know, although they are teenagers my children, I think it’s still really hard for them to understand because it’s hard for me to understand, you know. Previously with illnesses, you know, when you have a stomach bug or even the flu actually or something like that generally once you start feeling better than the next day’s better and the next day’s better, isn’t it. So, progress does tend to be linear with most of the other things that they’ve experienced. And I suppose with this not being, I think that’s really hard for them to cope with; you know, the fact that one day I can play table tennis with them and have a good time and then the next day I have to say no, I really can’t. I don’t like seeing the disappointment in their faces when I have to say no. So, I try to protect them from that a bit. But yeah, it’s…I do better at that some days than others.

In the acute phase, it was really difficult. I was very fortunate to live with someone, and he has been amazing, he’s really helped, he did everything for a really long time. There was no way I was going to manage to stand, to cook, or you know, getting to the shower was, was difficult. He helped with a lot. I don’t know what I would have done if I was on my own, I think I probably, I just don’t know. I mean, I’m saying, I think I probably would have had to have gone and stayed with family, but then if you have Covid, you can’t, you know. So that must be really difficult for people. Gradually, and I mean, months in, things started getting better, and I started being able to do more. But for months, and months, he did everything.

John: But other than that, I can’t complain because for…if ever she wanted a reference to become somebody else’s carer I’d be happy to give her one. Coupled with that, I mean [wife] is, you know, she’s my wife. We’ve been together for, how long, thirty…?
 
Wife: Thirty-four years.
 
John: Thirty-four years. There is nothing she doesn’t know about me. And so, in terms of, I can’t imagine having a carer who’s better than her. In terms of what she does for me. It just couldn’t exist.