So yeah there’s just that a lot of people dipping in and out of his needs and what’s going on with him and within that we have to keep the school informed And, I mean the last week before Easter we took him out of school because they had Covid in school and the teacher went down with Covid and we just said “No, you know, you’ve got to keep us informed of what’s going on.” We understand that we can’t keep him protected from everything but because his immune system is so low the fear of him catching it again is scary.

And because you have Long Covid, are you worried about catching Covid again?

To some extent, yes I guess, but I don’t know if I do get it again because I’m already quite bad, I don’t know if it would make it even worse, but I don’t really know [sighs]. I am kind of worried but not as much as I was before. I think I’m…as I’m getting better, I’m less and less worried. I kind of do, sometimes I wear a mask but I’m not either/or, I’m not really worried to catching it I guess. I think only in school really because of the…everyone’s together, but in like a small supermarket where there’s not really anyone in there, I don’t really bother with the mask because there’s no one in there, so…but if it’s in the school where there’s loads of people everywhere and they’re all crowding onto each other, I think I’d…yeah, I do.

So we kind of want to continue as normal but, you know, we’re still kind of protecting him and each other really, you know, we, my husband’s above 50, I’m of BAME background as you can guess, I’m at more risk, so there are those risk factors and age I guess, we are, you know, I’m nearing 50 but, you know, age works against us and, you know, we just, we don’t have much family around so we have to remain healthy in regards to, from a financial point of earning as well as just a general day-to-day living and being able to function as a family, we need to remain fit and able so that’s the kind of fear that I have because, you know, if I’m floored the whole family gets affected, perhaps more so than my husband because I’m the kind of main carer and organiser kind of thing, and the cook and all that kind of thing, so that’s the main thing.

Abigail: I don't want to catch Covid again because I know I'll like plummet again and I really don't want that to happen. So, like if someone has Covid, I'm like really nervous because I don't want to have it again, but I generally just try and like not worry about it. Like I do worry about it obviously because I don't want to get ill again but like…

Mum: You were a lot happier after you'd been vaccinated, weren't you?

Abigail: Yeah, I was happy after being vaccinated because I know that I was like less likely to get Covid if I've had the vaccine, and like even if I do, it’s going to be like a lot less significant.

I’ve got my first jab, but then I haven’t got a booster or second or whatever. And now there’s like, I got it like just when Delta was like in its mid-stages, like before we found, I can’t remember what it’s called, but the new one—

Omicron.

Yeah. So I got it then, but now we’ve got Omicron?

Yeah.

Yeah, I realise, that apparently it’s meant to be like a lot worse than Delta and the one we had before, so then now I’m just like worried, like, why is no one getting a vaccine, like, so I got my first, now apparently it has like a few months where it works fine and then like it wears off, so if you’re going to vaccinate everyone then why don’t you vaccinate them fully, and like continue it? Which I understand the rollout like millions and millions of people, but still, they need to do their absolute best to like vaccinate, vaccinate, vaccinate, vaccinate.

Michelle: No, and we’re scared of the vaccine because of what happened to me. Because I know that…you know, having had Covid, Covid doesn't agree with me, and then having had the vaccine and not being able to walk afterwards, and the right arm neurological issues, if the vaccine didn’t agree with me, is the vaccine not going to agree with him because of his Long Covid, so, what do we do? You know, the vaccination situation is, like, a massive contentious issue, we’re too scared to vaccinate him, and vaccinate him full stop at the moment. We’re too scared to put anything in his body—

Lyndsey: He’s behind on—

Michelle: He’s behind on everything because we’re just literally petrified; we’re just scared of every…we just don’t know. We just don’t know what to do anymore I think, that’s pretty much where we stand with him.

I am double vaccinated. But yeah, I didn't, I noticed someone I speak to had struggled with the vaccine and I think having Long Covid and getting the vaccine, it can, it’s found that it’s those symptoms are more pronounced or after. I didn't really notice that having had it. I had it twice. But I just had a sore arm and kind of felt a bit like fluey or like, like I’d got a cold. But yeah, I know some people it can make their symptoms worse, or I know some people have got one and not getting a second one because having Long Covid it made them feel worse. So yeah, I’m not sure.

My eldest son is a different challenge because he didn't believe initially that I had Long Covid. He just didn't really understand why I would have it. And he also refuses to have the vaccine; so that’s quite a challenge. So, I’m living in the house proof of why it’s a very good idea to have a vaccine and he just won’t. So, that’s caused quite a lot of arguments. I like to try and be reasonable and to explore his thinking around it. But at the end of the day, it’s really tough when I’ve got Long Covid and he’s around everywhere. He could potentially bring it back in the house again. So, that’s been a challenge as well. That’s an ongoing challenge because he’s very clear he doesn't want to get the vaccine under no circumstances.

So, around the time when I had it, I think after me, he got it. And he does, he didn't have it very badly. He was a bit rotten for about three days. So on the one hand he’s saying, ‘I know what it’s like. I’ll be absolutely fine. And if I catch it again then it’s not going to be…that’s what it’s going to be like. I’ve got immunity,’ he’ll argue that. Although it’s over a year ago now I think a lot of it’s to do with Twitter and other social media that he’s been picking up on. Some of the things he says to me sound quite conspiracy theory. Yeah, ideas that we try and argue about around it having toxins in and people getting heart problems so, I think it’s a health anxiety at the bottom of it. He’s very sure about it. There’s no shifting him on it at all. Yeah, that’s been really hard, actually.

Has it been quite divisive in the family?

Yes, it has because our family’s a bit more complicated because [oldest son] father doesn't live with us. So, he’s got a stepfather lives with us. And me and his stepfather scientists, essentially. That’s our background. And very, very for the vaccine and his dad—although he’s a nurse—is very clear that actually ‘No, you’re okay, you can get away with it. You've already had it. I don’t know why you’re worrying about it.’ So, that has caused an extra tension to do with the family dynamic anyway that was already there, different family ideas and values, but yeah it has sort of highlighted that. And it’s led to us saying things like, ‘Well look, if you really insist you’re not going to have it, you might have to go and live with your father.’ Which is the last thing actually as a parent, like a psychologist, I won’t actually say to him. But yeah, you get to a point and think, ‘This isn’t fair.’ You know, we don’t want it back in the house if we can help it. I certainly don’t want to get it again. You know, I was fit and healthy and running and things like that before it happened, so.