I don’t think they diagnosed him at all, but he had swollen limbs, he had swollen feet, he had a swollen penis, he had swollen things, you know, his swollen lips, you know. I’m…I was a headteacher, you know, and I could see these things, and I’m telling doctors and they’re like, “Oh no, no, no, he hasn’t had Covid.” Well, he slept in bed with two people that have clearly had Covid, so how could he not have had Covid just because he didn’t have the test, doesn’t mean he didn’t have Covid, and, you know, we spent a lot of time fighting that battle and being denied that fact, instead of being embraced and being said, “Well actually, you could have a point here.” You know, and now both me and Vinnie are living with things probably that we shouldn’t have to because we were denied earlier I think. 
 
You know, I think that a lot of what’s going wrong with Vinnie now, is a result of him not being accepted and treated earlier. You know, I’m not a rocket scientist, and I’m not a doctor, but it doesn’t, you know, take a lot to work out that had he have been treated for some of the stuff that went wrong in that early phase, that he might not be suffering what he’s suffering now, you know? 

So, how’s your day-day family life different at the moment?

It’s not how we ever wanted it to be. I mean, our hopes and dreams are pretty much shattered, that would be how I would start by saying, I think we dreamed of travelling the world, and I know Covid has stopped that for everybody, but, you know, I dreamt of Vinnie learning to surf before he could walk kind of thing, and, you know, he loves swimming, he loves…he loves sport, he loves the water, he loves music, and we love art galleries, and we love history and we love…you know, that kind of stuff and we love learning about the world in the world, so to be cooped up in four walls is, kind of like, the worst nightmare for us.

It’s… it is tough, you know, we’ve been through some really, really difficult times and it’s been probably the hardest time of my life ever. Covid has literally rocked our world and I… you know, I say that I will recover but I don’t actually know if I will if I’m honest with you. My legs…every day I hope my legs will get better, but then I can’t walk to the car and I think, ‘Jesus, will…will my legs get better?’

And then I stumble for a word and I think ‘God, I thought I was over this’. So…

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.

But school does pose massive challenges and being around other people, but it’s just, I don’t know what the…how the future is ever going to pan out because every time…like, over Christmas he was on a course of antibiotics, two courses of steroids and two courses of antibiotics, we managed to clear up the previous infection that he had, I think we’ve had about seven days of wellness, he went back to school for…he’s been back at school for a week and he’s gone [swish sound] straight back into a period of un-wellness.

I was, like, ‘I don’t know, kind of, what is wrong, but I know something is, like, seriously wrong.’ And I’d started Googling to see if anybody else was suffering from the same thing and we were, kind of like, April time and people had started putting out, on the social media, about Long Covid, long-haul Covid and I just thought ‘Yeah, that is absolutely what I’ve got.’ I’ve got, like, the fatigue, I could barely stay awake, I could…the pain was unbelievable, so I just knew something was bad.

It would…there’s elements of it that were really helpful, and it was just nice that other people with Covid, that had had Covid and had got Long Covid, were there and you could see them on the Teams screen, and that I didn’t feel like I was the only person in the world with it anymore. Because having Long Covid, you are really isolated, I think.

You know, whilst you know that there’s another 46,000 people in the Facebook group…like, in [local town]…because it’s obviously just a [local town] based thing, there was like, 10 people in my group and they were there on the screen in front of me, and yeah, it was just nice to see that I wasn’t alone anymore and that there was some older than me, I was probably the youngest of our group, and there was days when I was sick and I was ill, because my immune system wasn’t great. Oh, they did this problem-solving thing, so you’d bring a…it wasn’t…yeah, it tended to be me because I was the most outspoken probably, but we’d bring a problem and then everybody would pitch in to answer the problem.

I first of all thought ‘I probably need to apply for some sort of benefit to support us’, and I knew that physically I… I wasn’t in great shape, so I thought the first one… because I’d helped… supported my mum, apply for Personal Independence Payment, a PIP payment, I thought that I would apply for a PIP payment, and so I thought ‘I’ll do that one first’, because I’d had experience of it with my mum, and when I’d done it with her, I’d obviously had… I was in the right frame of mind and I was pretty well and healthy, I’d got all of the supporting evidence and documents and it had been pretty straightforward, I’d felt [laughs]. So, I thought I’d apply for it for myself, and I thought that it would be easy: oh, how wrong was I.

I tried to phone up first of all. Now, trying to do that when you have got a sick two-and-half-year-old, I think he was two and a half at the time, around, and I was on hold to try and phone up first of all to get the form was a challenge in itself, so I was put on hold and at first I thought I’d be on hold for 10 minutes, so I’d hold for 10 minutes and when, like, Vinnie would be trying to demand something from me and he would be sick, I’d be sick, I’d wait for 10 minutes and then I’d pink… think, ‘oh they’re busy, they’re not going to answer the phone’, so I’d put the phone down when they didn’t answer it after 10 minutes. So I think that went on for quite a while and it put me off to start off with, so I didn’t apply initially for a while, and then I realised that I couldn't apply online for this payment so I… so I tried to do it online, and I tried to do it at night when he’d go to sleep, but it wasn’t going to be that straightforward; I had to phone up to get this form that I had to fill out.

Back to the PIP application: on hold for an hour, eventually got through and they sent me a 44-page document, yeah. That sat in the cupboard for about, I don’t know, eight weeks, because every time I opened it, I then couldn't actually answer the questions when it had been really easy to fill out my mum’s form, I just kept looking at it and thinking ‘how the hell am I ever meant to answer that?’ So I think I had a deadline to answer it and I… as the days ticked by, I think the deadline probably was coming up and they text me, and I’d put it to one side and I just couldn't deal with it, then they kept texting and saying, “Your deadline’s approaching and you haven't filled… return this form,” so eventually I, kind of like, filled it out to the best of my ability at that point and then returned it, 44 pages. And then they wrote back and said, “We’re going to arrange an interview with somebody who will phone you.” So, they arranged an interview, and I think this is about… it… it had taken me about… the… we got back in March, I think I had the interview around about December, so it had taken me that long to deal with it.

He had also got his own challenges, so, you know, there was a possibility that maybe, just maybe, he was entitled to some sort of support, and I just thought ‘well, I’m not going to fall down the same traps that I had fell down’, so I thought ‘I’m going apply for him’, so I decided to apply for the child’s version of what I was getting, Disability Living Allowance, and did my background homework and didn’t focus too heavily on the Long Covid stuff because obviously when the world outside is saying Long Covid in children doesn't exist, it’s very, very difficult to try to convince other people that it really does exist, you know, it was hard enough to convince the adults of the world that it exists in adults, so to try and convince the adults that it didn’t exist in children is even harder.

But because Vinnie has got those developmental delays as well going on, which we don’t even know yet if they’ve been caused by Covid or not, you know, and they’re… you know, there is a strong, strong possibility that Covid has played a large part in the developmental delay that Vinnie’s got, you know, he’s got those so I listed those as part of his challenges, but we applied for that and that was awarded.

And I think for kids, when they can’t tell you what they’re feeling, it is so difficult, and up until now, you know, it has been hell really for us to even try and gauge, you know, what he’s been going through. I can’t even begin to imagine, because the only way that I can imagine is because I know what I’ve been going through, and when I’ve been his voice, sometimes I’ve felt like people have thought, like, she’s got Munchausen’s by proxy, you know, she’s just saying that he’s feeling this or feeling that, and they think that I’m a mad mother, but the only reason I’m doing it is because I feel like I’m the only person that can know what he’s been going through, and now he’s verbalising those things, like his pins and needles, you know, I know what the pins and needles feel like because I’ve had the pins and needles, I’ve got the pins and needles. When he says his brain hurts, I know what it’s like because I have the migraines every week, I know what they… that headache feels like, so yeah.

I think because it’s all he’s ever known it’s been part of his life. I think now he’s getting a little bit older, he’s just started to verbalise things, so he’s just started to be able to say things like, “Brain,” “brain cold,” and this week he went and got a towel out of the kitchen and he made me run it under the tap and put it on his head, and he’s been able to say, “Legs hurt,” he got, “Noodles,” so for ages I couldn't work out what the ‘noodles’ were but they’re pins and needles. So, it’s like it’s opened up a world for us really with him being able to just say the odd word and being able to work out what it is.

I went back to [doctor] and I said, “Look, can it be feasible…” because the… Vinnie had been taken into hospital in June and they kept dismissing Vinnie’s Long Covid as well, and I just wrote him an email and I said, “Look, I want you to just stop for a second and accept the fact that isn’t it feasible that, you know, if I’ve got Long Covid, that Vinnie can also have Long Covid, you know, just for a second, can you just contemplate it?” and he must have, like, read my email as well and gone, “Well, actually you’ve got a point.” And I sent him a video of Vinnie’s seizure and… but it’s had to be done through email, I couldn't do it… and the eConsult system doesn't work for me because it… every time I tick the box, it sends me to A&E, and the same with Vinnie because there’s a consult system and those systems, like, literally, because it says if you've got a headache with  a chest pain, you've got to go to the… you've got to go to the doc- the hospital.

Well, I… like, you know, we constantly live with Long Covid, with chest pains or headaches, or you know, and… yeah. All of our symptoms are such that we’d end up in A&E every five minutes. But yeah, it… it took a lot of those kind of emails I think initially to build that relationship and that grounding and understanding, and I think I just was very forceful of the fact that you can’t dismiss me and you can’t dismiss this with something else, because anytime that… like, every time we went to the doctor’s, we dealt… for Vinnie, we dealt with a different doctor who kept saying things like, “you don’t know it was Covid, you don’t know, you don’t know”, and I would just standby it and say, “This was down to Covid, this is Long Covid,” and… and it… but it has taken a lot longer for Vinnie because  even up till my last thoracic clinic appointment when I said, “And my son’s still got… my son’s got Long Covid, he’s four,” he went, “Children don’t get it,” and I went, “How can you even believe that?”  and that was like a… a thoracic… a Long Covid thoracic clinic consultant.

And I had to say to him, “I can’t believe you think that,” I said, “you need to really have a better understanding because children do get Long Covid.”

And then in the hospital they… he… it was on his notes, he’s got post-Covid syndrome. It… it just took such a long time for it to filter through that he’d got post-Covid syndrome, and then finally, like, the consultant that came round, the paediatrician, she said… we’d started talking about… post-Covid syndrome, and she said, “We’re just seeing so many children now with respiratory infections who just cannot shake…” after Covid, the… you know, the lung the lung issues, and on our… on our ward there were loads of kids with, like, breathing difficulties, coughing, you could just see them barking like dogs.