That my children are, they don’t understand, they ask me if I’ve got Covid still. They say to me, “Have you got Covid?” And then they’ll say to me, “Are you gonna die and when are you gonna get better?” And no matter what I tell them, they still ask me again the week after. They, they just do not understand it at all. And they say, “Why don’t you take a medicine?” Why don’t ya, you know, they just can’t under—it’s so unusual that there’s an illness that you can do nothing about. And I think that’s really hard for them to accept. And school have phoned me and said, they’ve told them that I’ve got, one of me children said I’ve got Covid and should my children be isolating. And I said, “I’ve had Covid a lot of months ago, but they still think I’ve got it, you know. They’re quite confused.

But my husband’s social life has really reduced. He were a captain of a rugby team and he had to stop that. We used to go out, you know, to the pub with us friends and things and we don’t do that anymore. I think he’s riddled with guilt really to do anything. I tell him, you know, you’re gonna have to go and see your friends. But he’s, he’s quite angry really with his friends, I would say because I’ve had a lot of emotional support from my friends and family, and I just think men don’t talk the same. And he’s felt, so if his friends do ring him, they like to talk about football or you know, men’s stuff. And he feels like none of them really know what his life, what’s happened to him and he’s got a brother who knows and my brother knows. But a lot of the men round him, like his friends have got no idea. And he finds that hard. Like he said, if he speaks of them their biggest worries are like so small compared to his. He finds it hard to be sympathetic. I think he’s quite angry. Not angry at them, just angry at life, I think. Not angry, he’s frustrated. He finds it frustrating.

Yeah, I worry if they get Covid and be like me. Because there has been talk of these like PoTS [an abnormal increase in heart rate that occurs after sitting up or standing] and the things they’ve told me have been genetic. I think it’s, will I pass that onto them. Will they react badly? I worry that I’m not gonna get better and it’s gonna be some sort of autoimmune condition and I’m not gonna be here for it. And I worry that I’m gonna stay as I am and never be able to be part of their lives. I worry me husband’s will want somebody else because you know, I’m poorly and not bringing a lot to his life, but stress. So, yeah, lots of worries. Worries financially. What am I gonna do when my pay stops and I worry I’ll lose my nursing qualification if I can’t get back soon that if…years you’ve not worked, you lose it. I’ve done coming up 18 months. So, lots of worries.

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.

It’s for everyday things, the school run. The school run has really bothered me because you don’t realise how much you’re just in the know because you go to school and you know what’s happening. You know who they’re playing with. Such things like, if they’ve had a bump, bumped their head at school they tell the parent, the person who picks them up. I don’t know these things anymore about them. And so the really small things. We can’t go to any family gatherings because I can’t stand noise and lights. I’ve always, I’ve go to be sat down or in the wheelchair, which I find hard mentally really more than anything because I think, when I’m in the house I don’t notice as much that I can’t do the normal, I’m not a normal mum. If I go somewhere in, in the wheelchair and I realise how much I can’t do so we can’t like go to the zoo or the park. So, their dad does a lot of that bit, that sort of stuff with them now without me.

I’ll just tell you one more thing what’s been really, the children’s birthdays my son’s third birthday was while I were really poorly at the beginning and I were just in bed the whole day and not part of his day at all. So, he didn't have the party. He didn't have anybody visit the house, just his grandparents, whereas, normally, we’d have a party and their friends come and I’d make a really big occasion of their birthdays. And then my daughter’s birthday was in September, and I’d been really, really hoping that I could be part of their day. And I only managed the bare minimum. So, she had a bouncy castle in the garden I couldn't, I were too, I couldn't even get out of the house or anything on the day of the birthday, but I went I went outside and saw her on it and just talked to her whilst she was on it the day after her birthday. And I went downstairs while she opened her presents in the morning talked to her and saw that bit. But that just absolutely did me in. And then I was upstairs for the rest of the day. So, they were really tough times for all of us, I think. I think I felt it, I just got more guilt because it were their birthdays.

He’s very much got that I will get better and he’s paid for, he’s wanted to pay for everything he could possibly pay for. So, I’ve seen private doctors and private physio and a private occupational therapist to try and help me around the house and find ways and his attitude is, you can’t stay like this. You’ve got to get better. And I don’t think he accepts that this might be a long, long time.

It’s been a big stress. I’m really fortunate we’d got savings and so we’ve used a lot of savings and I only went to half pay from August. So, I was on full pay, but just the stress of the upcoming, you know, knowing I’m gonna lose my wage has been a worry. And we’ve, we’ve paid a lot out in private healthcare. We’ve paid for private physios as well which were £80 an hour and I had, I were having ‘em several times a week. I paid for some antibiotics which were £400 just an example of the cost. Tests were like two, two and half thousand pounds. We spent a fortune on tests. And financially now I’m onto statutory sick pay and half pay for my work and then after Christmas and my pay will stop. I’m applying for like the government disability like don’t know what it is, benefit.