61 - Rosie & Colin Pidgeon - Long Covid in young people & Rosie's artwork

Episode 61 of the Long Covid Podcast is a chat with Rosie & Colin Pidgeon. Rosie has had Long Covid for a little over a year after catching it at school. Rosie talks through her symptoms & what has helped; and Colin, her wonderfully supportive Dad, describes how he's adjusted his & his family's life to help support Rosie. 

Rosie is also a really talented artist, and is curating an exhibition at the start of December, in aid of Long Covid Kids. Links below (& these will get updated with anything new as the exhibition happens)

This is a really candid & honest discussion of how difficult this illness is, and my thanks to Rosie & Colin for being so generous with their time & energy.

Rosie Pidgeon Art Facebook 

Facebook event page  

Art by Rosie Instagram

Tickets for exhibition opening (in aid of Long Covid Kids)

Go Fund Me to Support the exhibition

For more information about Long Covid Breathing, their courses, workshops & other shorter sessions, please check out this link

(music - Brock Hewitt, Rule of Life)

Transcript

Welcome to the long COVID podcast with me, Jackie Baxter. I'm really excited to bring you today's episode. Please check out the podcast website, longCOVIDpodcast.com, where there's a collection of resources, as well as a link to the Facebook support group. If you're able to, please consider supporting the show using the link in the show notes. If social media is your thing, you can follow me on Facebook @LongCOVIDpodcast, or on Twitter and Instagram, both @LongCOVIDpod. I'm really keen to hear from you. If there's anyone you'd like to hear on the podcast, or if you've got any other feedback, please do get in touch through any of the social media channels, or email LongCOVIDpodcast@gmail.com. I really hope you enjoyed this episode. So here we go.

Jackie Baxter  0:00  
Hello, and welcome to this episode of the long COVID Podcast. I am delighted to be joined by Rosie and Colin today. So Rosie has long COVID. So we're going to be talking a bit about that and her family's experiences. But Rosie is also a talented artist So we're going to hear all about that as well. So welcome both of you to the podcast. 

Colin Pidgeon  0:23  
Thankyou. Hello. 

Jackie Baxter  0:24  
So to start with, and you can do this in whichever order you wish, would you mind introducing yourselves just a little bit?

Rosie Pidgeon  0:30  
I'm Rosie, I'm 17 years old. And I got COVID Last year at the start of the school year, and I've been suffering with long COVID since

Colin Pidgeon  0:43  
I'm Colin, I'm Rosie's dad. And I've been trying my very best along with the rest of the family to see Rosie through this very difficult last year.

Jackie Baxter  0:54  
Yeah, well, thank you so much, both of you for being here. And for sharing your story. Because you know, it's so important to do that, isn't it? So would you mind sort of talking us through your - maybe when we talk about the initial illness to start with? How did that go for you?

Rosie Pidgeon  1:13  
Yeah, when I, well I never actually tested positive in the first place. But one of my close friends had tested positive and I had lost my sense of taste. So then after that I isolated and I was pretty much okay. I think I had a high temperature a couple of days, maybe. But apart from that I was okay. And then it was after the isolation period when I was trying to get back to school that I started to struggle more.

Jackie Baxter  1:52  
Yeah. So it was actually it was after the sort of initial illness had actually passed where things started getting worse then for you? 

Rosie Pidgeon  2:01  
Yeah, it was. 

Jackie Baxter  2:02  
Yeah. It's It's so interesting, isn't it? I mean, it's not interesting at all. We hate it. But it is fascinating, isn't it in some ways? What were your symptoms that started happening when you were developing what became long COVID - how did that differ?

Rosie Pidgeon  2:18  
Initially, it was dizziness when I got up in the morning. And I was fainting, and then sort of headaches started. And that was like a constant headache. And then the sort of just exhaustion and muscle pains.

Jackie Baxter  2:37  
And this exhaustion. I mean, you've experienced it for the last year, and and I'm very familiar with it as well. And it's, it's like nothing that you've ever experienced before is it? 

Rosie Pidgeon  2:47  
Yeah, 

Jackie Baxter  2:48  
it's a completely. I don't know, I think I thought I understood being tired. And then suddenly, this hits you. And it's like, oh, no, I was never tired before.

Rosie Pidgeon  2:57  
It's tired to an Extra extent.

Jackie Baxter  3:01  
Yeah, it really is. I mean, you were a little bit further on through the pandemic, when this happened to you, weren't you? Were you hearing about it from other people before it happened to you?

Rosie Pidgeon  3:10  
Not as much. No, I hadn't really heard of it before.

Jackie Baxter  3:14  
I mean, we were hearing from the start, weren't we that, you know, "children and young people don't get long COVID Or don't get COVID?" And, you know, we obviously know that to be completely untrue now, but 

Rosie Pidgeon  3:26  
yeah, 

Jackie Baxter  3:26  
did that stop you from getting any medical care or anything? What what happened with any doctors that you were seeing at that point?

Rosie Pidgeon  3:33  
We went to the GP for lots of different blood tests and stuff. And it was only after - I actually don't remember how long it was before - They said, Oh, that must be something to do with COVID.

Colin Pidgeon  3:50  
It actually wasn't all that long when Rosie was first referred to the long COVID clinic. We'd seen various GPs within the practice, you know, but they said, you know, we don't know for sure, because there's no PCR test showing that Rosie has had COVID. What we're doing is we're making a kind of clinical diagnosis based on the sequence of contact, and her symptoms and so on. 

So it was a bit kind of messy as to when you know what - nobody just said, Oh, right. Yes, it's long COVID For sure. It was kind of like, you know, it could be some other kind of post viral stuff. But they're also then worried about checking, obviously, for other serious things that could be causing the same. What they, they sometimes describe, a bit frustratingly, as sort of nonspecific symptoms, and I'm sure as a sufferer, you probably - they probably feel pretty specific to you.

Jackie Baxter  4:46  
Yes, exactly. And I had a similar problem where I didn't have a PCR test because they weren't testing at that point. And, you know, a lot of people in the similar situation, you know, it's like, Well, you never even had COVID So how can you how have long COVID? And you know, you know don't you? What else was it going to be realistically. But because you don't have that one test, it just can make everything else a lot more difficult or a lot more messy as you described. 

Do so you ended up with the whole sort of bank of blood tests and everything coming back clear? And you know, everyone telling you Oh, well, you're fine. 

Rosie Pidgeon  5:26  
Yeah. 

Jackie Baxter  5:27  
It's reassuring in some ways, isn't it? But it's also I mean, certainly for myself, I find it incredibly frustrating, where I almost want some of my tests to not come back clear, because I know full well that there's something wrong with me.

Rosie Pidgeon  5:39  
Yeah. Yeah, I found it frustrating as well.

Colin Pidgeon  5:44  
I remember the GP ringing me while I was driving, actually one day, maybe just from having dropped Rosie at school, when she was still trying to go into school a bit, with the blood results. And he said, Oh, well, they've all come back normal. And I kind of, I must have made a sort of a kind of ughhh sort of noise or given that kind of vibe. And he said, It's good. It's a good thing that it's normal, because we're looking for things that could be problems and I said, Yeah, that's fine. But what really what we're hoping for is that you'll find something that you can treat, you know, so yeah, all tests are normal. It's part of the long COVID experience, I guess, isn't it?

Jackie Baxter  6:26  
Yeah, it is. Yeah. double edged sword, I think for sure. So yeah, this this idea of ruling things out, you know, it's, you know, yeah like you say, it's, it's good. But also, you know, that there's something, so yeah, intensely frustrating. 

So you mentioned that Rosie was still trying to go to school at that point. How was that - was that difficult? Because I mean, I'm just thinking, from my own experiences, I was trying to work from home for a while. And it just sucked the life out of me, I thought I was coping at the time and I, looking back on it, was absolutely not. So I can't really imagine actually trying to be sort of in school on top of that.

Rosie Pidgeon  7:07  
There were a couple of times where I tried getting up in the morning, and just going in from the start of the day. And then we had a few meetings with my head of year to talk about how they could sort of help. And they sorted out a reduced timetable. But even even with that, it still wasn't working very well. And I only ended up going in for an hour maybe, for an art class, every few weeks, maybe,

Colin Pidgeon  7:41  
you know, what we were doing was I was downloading work that I could do offline, I was working remotely, for the most part. And so I was downloading maybe a spreadsheet or something onto my laptop and going sitting in a cafe, in a church around the corner from Rosie's school. So that I could still be working. But if Rosie rang me after half an hour and said like, I can't, I can't cope with this, can you come and get me, then I would go and get and we had a sort of pre arranged time as well. 

But it was kind of like, you know, I can sit here, I've got work I could be getting on with, I can still be productive and keep my job. But at the same time, I can also try and be there  to get you rather than have to drive half an hour across town and lift you if you're not feeling well. 

It puts a lot of strain on things like that, you know, and my work were very good in terms of flexibly adapting, you know, to Rosie's needs really, it wasn't my needs more hers, for which I'm enormously grateful, because life would have been so much harder if I'd had to be reporting into an office all the time or whatever.

Jackie Baxter  8:50  
Yeah, definitely. And I guess did having that option of escape from school, for want of a better word. Did that kind of relieve a bit of pressure as well for you, Rosie?

Rosie Pidgeon  9:02  
Yeah, it did, because I knew that I could sort of get away almost immediately if I needed to.

Jackie Baxter  9:08  
Yeah, definitely. That option to bail when needed, 

Rosie Pidgeon  9:13  
yeah, 

Jackie Baxter  9:14  
Yeah that must have helped a lot. I mean, you just kind of touched on that, Colin, you know, the impact on you know, obviously, it's Rosie that's feeling the physical symptoms and going through the actual illness, you know, which is obviously completely awful, as I'm sure most people listening will be able to appreciate from their own experiences. But, you know, we also know how widely this can affect not just the sufferer but the close family and you know, people you're living with and and wider than that as well. So this must have had a huge impact on  your family and and obviously your work as well.?

Colin Pidgeon  9:53  
Well, yeah, I mean, there's there's all sorts of elements to that. I mean, Rosie's mom works in school. She's a classroom assistant. And so, you know, she's got to be in school when she's in school. So the fact that I was able to work at home and take over the caring role as much as possible. Certainly in the early days, when Rosie didn't know what was going on, we didn't know what was going on. And she was, you know, basically coming down lying on the sofa in tears. And just, you know, it was a really difficult time, and just sitting there on the sofa and holding her and, you know, she's sobbing and saying, When am I gonna get better? And of course, you have no answers, and not really anything to offer in terms of pain relief, or anything that actually made any difference. You know, so that it was it was, this time last year was very tough.

Jackie Baxter  10:47  
It's the helplessness almost isn't it? Maybe

Colin Pidgeon  10:51  
Yeah

Jackie Baxter  10:52  
You would do anything, literally anything to help, wouldn't you - but you just can't because you don't know what to do.

Colin Pidgeon  10:59  
you don't know what to do. And the tools that you have don't have any effects, though. Rosie's basically has had constant migraine for what, a year - over a year now. And so we were trying ibuprofen,  you know various painkillers, and so on. And I remember saying to Rosie one day, well, you haven't said anything about your headache for a while, you know, it must be getting better. And she said, No, Dad, I don't mention it, because nothing you can do makes any difference. You know, so it's kind of like, well, fair enough, you know,

Jackie Baxter  11:35  
It is, it's so tough isn't it - I mean, I find myself doing it, where I don't want to burden my partner with with all of this stuff, because I know that there's not anything that he can do beyond what he already is. But at the same time, he's my support system. So you know, it's a tough one, isn't it? From both sides. Have you found anything that does help at all?

Rosie Pidgeon  12:00  
I find for the headaches, ice packs tend to help sort of ease it. And then for the muscle pains, like warm baths with bath salts and stuff in them, that sometimes helps. And sort of hot water bottles and things like that.

Jackie Baxter  12:21  
Yeah, definitely. Do you find you sort of develop your own strategies as well to kind of, to cope with things or to know when to stop and things like that?

Rosie Pidgeon  12:35  
Yeah, I've sort of got into a bit of like a routine of knowing when, like, what, what I can do and what I can't do and what will cause my head to hurt more or, for me to feel even more tired.

Jackie Baxter  12:52  
Yeah, totally. And that I suppose that sort of helps. Does that give you some sort of feeling of - I don't know if control is the right word. But you know, a little bit of control over what's going on with you?

Rosie Pidgeon  13:06  
Yeah, it's a lot better than the start when we just didn't have any idea at all. And now I sort of can help it a little bit.

Jackie Baxter  13:15  
Yeah, I mean, I yeah, you're learning all the time, aren't you? And I find it very difficult to realize when things are getting better, because everything is just so awful. But it does help me anyway, to sort of look back and think actually, that is better than it was. Do you feel like things have improved, even if not as much as you would want?

Rosie Pidgeon  13:40  
I think a bit, even if it's just in terms of handling it better,

Jackie Baxter  13:45  
I think actually, that's the thing, sometimes, isn't it? It's not necessarily that anything is improved, it's that you are managing things and you know what to do a lot better.

Colin Pidgeon  13:56  
There's different elements to it with Rosie, I mean, we see the improvement in her probably more than she feels it because it is gradual. She's in so much better place than she was six months ago. And she had applied to do her art course, starting in September. But I'd be quite honest with you up until about even July, I was thinking how on earth is she going to manage this? You know, it's just not going to happen. And then she's going to be heartbroken, you know? 

But there's two other things apart from the fact that Rosie is much better at pacing and self management. She started a low dose Naltrexone and acupuncture in April. And since then, we have seen improvement. Now because we started those at the same time, plus, there's been more time, plus Rosie's getting more experienced. It's hard to say to what extent any of those things has actually helped. But there is improvement. So in some ways, we don't care what 's helping, we'll just take it and bank it.

Jackie Baxter  15:03  
Yeah, I've noticed that as well. It's like, oh, but I want to know what it was. And then actually, I think you know why, it doesn't matter. You're right about it being very hard for the person suffering to be able to tell a lot of things themselves, sometimes I think. 

But yeah, you've kind of segued very nicely there into the art side of this. I'm a musician. So I've found - not to start with actually, it was very frustrating to start with. But as time has kind of gone on a bit, I find creativity to be a really kind of good outlet, and something that I can do that fits around my symptoms, rather than some of the more active hobbies that I would have done beforehand. Is this what you found as well with your artwork, Rosie?

Rosie Pidgeon  15:50  
Yeah, even towards the start, I was still trying to do like coloring in books. And that didn't cause too much backlash. But now I've been able to do a lot more in sort of art. And I think it's really helped. Even just to like, convey how I am sort of feeling sometimes, it's good to put it on a canvas.

Jackie Baxter  16:18  
Yeah, definitely. I mean, you know, people talk about things like journaling don't they, as being really helpful. And I think maybe when you are a creative person, whether it's music, or art or whatever that is, I think it can be quite helpful can't it. 

Rosie Pidgeon  16:33  
Yeah.

Colin Pidgeon  16:35  
A good example of that was when the Long COVID Kids charity got permission to deliver letters to Downing Street. I don't know if you remember - it was the same day as all the protections and things were finally lifted, and the testing ended in England and all that. And so the timing was kind of, it felt like a good time for these things to be delivered. And for the kids to say, look, what are you doing for us? And Rosie didn't go. But there were a number of kids from the charity who went along with their parents or carers. And for a lot of them, they struggled. 

Rosie sent a letter, which was delivered by those guys. And then we heard nothing for quite a while. They were really upset by it, you know. And Rosie just went straight to the canvas didn't you Rosie? And she just painted this this big kind of blood stained kind of howl of pain, which just said, it's not just in our heads. That's going to be one of the parts of her exhibition now that she's doing with Long COVID Kids charity. 

Jackie Baxter  17:42  
And that's so exciting. Do you want to talk about that a wee bit?

Rosie Pidgeon  17:47  
Yeah, I've got a a gallery in December time. So one of the pieces that I'm doing is a big long series of canvases with 1 dot of paint for every kid in the UK with Long COVID. So I've been working on that, it's taking a long time, but it's sort of coming together. And I think it'll be really sort of powerful to show sort of how many, even just kids, are suffering with Long COVID.

Jackie Baxter  18:23  
Yeah, and for them to feel represented as well, I guess? 

Rosie Pidgeon  18:27  
Yeah. 

Jackie Baxter  18:28  
I mean, it's coming back to this Kids with long COVID, or young people with long COVID. And that those people that were told that, you know, they'll be fine, right from the start. And it's been quite hard to kind of shift that mantra, hasn't it? I mean, I definitely felt it myself, and I'm a lot older than you. But that if you're young, fit and healthy, you'll be fine. And I think you know, a lot of what long COVID kids are doing and what you're doing with your artwork, it's bringing a bit more awareness to the fact that actually, you know, it doesn't matter who you are, you could be affected by this.

Rosie Pidgeon  19:03  
Yeah. And just to sort of show people that they're like, not alone, and there's other people as well.

Colin Pidgeon  19:12  
There's raising awareness, there's also giving expression to what's inside. And that's a lot of what Rosie is doing is giving an outlet to how she feels and expressing it. And the exhibition isn't just her, of course, there's other people and we've had submissions from various places, but in a couple of weeks time, we're going to Lisburn, which is half an hour's drive away, to meet a girlRosie's age who's coming from Austria, with a couple of artworks, which are going to go into the exhibition. Well, it's up to Rosie to choose. She's curating it, but I imagine given the distance they're coming it would be a bit rude not to put them in - and they're brilliant as well. We've already seen them, you know, photographs, so So we're creating connections as well, which is it's hugely important for people who are isolated.

Jackie Baxter  20:01  
Yeah, it really is, you know, I mean, I think when you're a young person and you're in a normal, normal, quote, unquote, situation, you know, you'd be in school all the time, you'd be socializing with your friends and all of these things. And it's just so difficult to do those things, isn't it when you're not well, and when energy is so precious, so yeah, isolation is definitely a thing. So it's absolutely wonderful that you've connected with other people across all sorts of boundaries as well. It's lovely. 

Rosie Pidgeon  20:34  
Yeah. 

Jackie Baxter  20:35  
So is the exhibition is there any way that people can see it from, you know, not physically?

Colin Pidgeon  20:41  
We're hoping that BBC are gonna come with cameras. So we might be able to share some snippets of that, we will be taking a lot of photographs. And Rosie has - certainly her eldest younger sister, is a good photographer, so we'll get her to photograph the artwork in place as well, that may be the event. So we'll be sharing that, I'm sure, on Rosie's Instagram, and via Twitter, or, you know, just we try and make the most of everything we do. And I'm sure long COVID Kids will be keen to have as much visibility to it as possible. So we'll be - we'll probably write a blog, or there'll be something, you know, so there will be a way for people to see the work. Yeah.

Jackie Baxter  21:27  
Yeah. Because it's such a lovely idea. And, you know, it's obviously the culmination of a huge amount of work that you've put into it as well. And, you know, only people with long COVID or other chronic illnesses will really understand what that really means to have put all that effort in when you're unwell, I think, but you must feel like it's worth it, like you get something out of it?

Rosie Pidgeon  21:50  
yeah, I think I think it'll be good once I've got everything finished, it will feel like a sort of an achievement to have done.

Jackie Baxter  21:59  
It is, it's an amazing thing to have achieved, you know, while ill and also at a young age as well.

Colin Pidgeon  22:06  
Absolutely. I mean, it's very unusual for for somebody of 17 to be leading an exhibition on their own, oh it's magnificent. And there are people who've been a big part in that - Rosie's art teacher, she was doing her at A levels supposedly. And her art teacher said, Look, you could really draw on this experience that you're having and use it and shape it as part of your work. And, you know, despite the fact that she could barely get to school and barely work for most of the year, she had managed to achieve a B grade. So that's magnificent. And I'm so proud of her for getting it in, you know,

Jackie Baxter  22:45  
fantastic.

Colin Pidgeon  22:46  
We all are. It's been, you know, a real battle. So it was a huge achievement, just to submit the work, let alone anything else. And the fact that it happens to also be quite good, even though I'm biased, you know,

Jackie Baxter  23:03  
it is - it's absolutely huge. And it's amazing.

Colin Pidgeon  23:05  
The one thing that I would like, I suppose to add, is that we recently saw Rosie's consultant, and the experience of going see a consultant who listens and thinks, and he was very honest, he said that, Rosie, I don't really know what to do here. But I am not going to do nothing. We shouldn't sit on our hands. That was his phrase. So we will try things, you know, which is exactly what he's done and tried to arrange for tests that based on the evidence that he's seen and things that I brought to him from Twitter as well. He considered and said yes, okay, actually, it might be worth trying that. 

So that openness is hugely important. And I think the first time Rosie saw him, do you remember what he said to you Rosie? 

Rosie Pidgeon  23:57  
No. haha 

Colin Pidgeon  23:58  
I've put you on the spot there! He said, Don't let anyone tell you that this isn't real. Okay, which I'm getting emotional, again. Strange how this happens. But for me, going to appointments and sometimes expecting it to be a battle, and to have someone who is actually receptive and understands and is prepared to listen and then act on what he hears - it's so important.

Jackie Baxter  24:24  
It really is, because there's nothing worse than you know, using all your energy and going to see somebody who you know, is supposed to be helping you. And then for them to turn around and just be dismissive or unhelpful or unsupportive. It makes everything else worse, doesn't it? 

Rosie Pidgeon  24:41  
Yeah. 

Jackie Baxter  24:43  
There are lots of children and young people out there with long COVID. And, you know, going through this horrendous journey, sort of alongside you. And I was just wondering if you had any sort of advice for anybody listening, especially maybe aimed at sort of children and young people, just kind of from your experiences?

Rosie Pidgeon  25:05  
Just to give yourself time. And it's hard, because you have to be patient with yourself. But take all the little small wins that you get each day. And eventually they'll sort of figure out how to help us all, exactly. And you just have to be patient.

Jackie Baxter  25:27  
I think you've hit the nail on the head there. It's incredibly difficult. But yeah. Well, thank you, both of you, so much for joining me today - for your time and your energy. I know how precious that is. And it's been an absolute pleasure chatting to you both, and all the best with recovery and also with the exhibition. 

Rosie Pidgeon  25:49  
Yes. Thank you. 

Colin Pidgeon  25:51  
Thank you.

Jackie Baxter 
Thank you so much to all of my guests, and to you for listening. I hope you've enjoyed it, or at least found it useful. The long COVID podcast is entirely self produced and self funded. I'm doing all of this myself. If you're able to please go to buymeacoffee.com/longCOVIDpod to help me cover the costs of hosting the podcast. Please look out for the next episode of the long COVID podcast - it's available on all the usual podcast hosting things and do get in touch - I'd love to hear from you.

Transcribed by https://otter.ai