15 - The Festive Compilation

Episode 15 of the Long Covid Podcast is a bit like a festive tapas - a little bit of everything. Maybe you haven't heard all the episodes and would like to whet your appetite? Or maybe you have heard them all but would like a few pearls of wisdom? I hope you enjoy this compilation episode.

The Long Covid Podcast will be back in January - I have some awesome episodes lined up for you. I hope you have a very restful, peaceful and Covid-free festive season.

My fabulous guests were: 01 Barbara Melville ~ 02 Jackie & Malky ~~ 03 Chiara Berardelli ~~ 04 Chris White & Jane Ormerod ~~ 05 Dr Amy Small ~~ 06 Professor Nick Sculthorpe ~~ 07 Suzy Bolt ~~ 08 Rachel Whitfield ~~ 09 Claire Hastie ~~ 10 Amanda Finley ~~ 11 Iain ~~ 12 Kelly Mitchell, the Breathing PT ~~ 13 - AJ Finding My Sparkle ~~ 14 Long Covid Creativity Compilation

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(music credit - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  
Welcome to the long COVID podcast with me. Jackie Baxter, I am really excited to bring you today's episode. Please do check out the links in the show notes where you can find the podcast, website, social media and support group, as well as a link to buy me a coffee if you are able, you should not rely on any medical information contained in this podcast and related materials in making medical health related or other decisions, please do consult a doctor or other health professional. I love to hear from you, if you've got any suggestions or feedback or just want to say hey, then please do get in touch. I really hope you enjoy this episode. So here we go.

Jackie Baxter  
Hello and welcome to this special episode of the long COVID podcast. I can't exactly call as a best of because all of my guests have way more that is worth listening to than the short clips I've selected today. This festive compilation could be seen a bit like a Christmas tapas. It's got a little bit of everything here. Each of my guests have a few words of wisdom or something interesting to say. If you haven't already, I definitely recommend listening to the full episodes. As all of my guests have been brilliant. Episodes are available as always, via the website, at long COVID podcast.com or wherever you get your podcasts. In Episode One, my first guest, Barbara Melville, from long COVID Scotland, talks about what she would love to see in terms of care.

Barbara Melville  
This is where I get idealistic. Very idealistic. What I want is for somebody with any symptoms of chronic illness to be able to go into their doctor and get diagnosis, evidence based treatment and support empathy, and for them to also have that extended to other areas of their life, so when they mention it to their mom or their aunt or their best friend or their boss that they get The same support and empathy now that is incredibly idealistic, and if we see that in my lifetime, that would be a miracle. But that is, that is what we're moving towards. And I think, as you say, the care is the key part. If we can get lived experience at the heart of the, you know, the services and so on that are being designed and delivered, that would be a great start, and for that to then translate into to treatment and care. That would be brilliant. But I would like it to be wider and more cultural. I think it's a culture we've got issues with how we view the Chronicle, and that really, really needs to change. I would say I would like to see everything change.

Jackie Baxter  
Next Barbara talks about the long COVID summit, that long COVID Scotland held earlier this year. I

Barbara Melville  
think it's just got to the point where there really isn't enough. It's this has become a crisis for Scotland. It's an emergency. And so it was put together quite quickly, and yeah, that that was, that's what it was about. It was about the fact that what's been put in place, while extremely well meaning. We're sure of that just isn't translating into, you know, diagnosis and care for people. There are people who are, you know, sitting at home with chest pain and breathlessness, and they're going to the doctor, and their doctor can't help but the tests are coming back normal if they're getting them, and some people aren't getting anything at all. People getting repeated like, chest infections and so on, too, people with neurological issues, and some of these are really, really severe and serious symptoms that people are experiencing, including, like, I say, the chest problems, so symptoms of heart attack, symptoms of stroke, and people are sitting at home with this and they're not getting help. And the sign guideline, although, you know, definitely got time for sign, and we were happy to input into that, the implementation note that went along with it, that was worked on by Scottish Government. And we did input into that. It just doesn't seem to be, again, translating into anything. It's not helping people, as far as as we can tell, and we just thought we need to do something here. We need to get people in a room. In

Jackie Baxter  
the next episode, my partner and I talk about my journey. Think you suggested that there must be some sort of support group somewhere, yeah? I think I did. Yeah. I didn't know what to do, and I

Jackie Baxter  
thought there must be other people going through it. And I think initially I suggested it, and you said, Oh, I can't think of anything worse than this is really depressing, finding loads of other people who are really depressed as well. Yeah,

Jackie Baxter  
you did. You went, in fact, I did, yeah, I did go and look. And actually, in some ways, it was quite reassuring, because there were so. Any other people that I hadn't realized I thought, you know, I'd felt really alone through all of the bit where I'd been feeling awful. You'd just sort of think normally, if I was complaining of not being able to breathe in chest pains, you know, you'd be into the hospital for a barge of tests before you could blink. But you know, because there were so many other people that were worse off at the time, you know, they were sort of like, we can't really deal with you, so you just have to deal with it yourself. So finding out that there were 1000s of other people in the same situation was comforting, at least I found as time went on and no improvement happened, it just got more and more frustrating, more and more pressing, because I didn't really know what to do. There wasn't a lot of advice from anywhere as to what I should be doing. Should I be trying to exercise? Should I be doing nothing? There was not really any advice from anywhere. And you know, as a person that exercises what I do, I just didn't really know what to do with myself? Did I No? Next I talked to my friend Chiara, who, unknown to me, had been suffering from symptoms from around about the same time as myself. She talks about the pressure, both from herself and from the world, and the difficulty with an unknown illness and not knowing what to do.

Chiara Berardelli  
It's the hardest thing I found was myself not being critical of accepting. I'm not, you know, in fact, what I do? Think I've learned a lot, but I've learned to be more patient with myself, you know, and just to accept the way that I am okay. This is how I feel. I mean, I'm not saying I do every time, but when I look at the whole, you know, the light, the sort of length of time of me having it from the start till now, I mean, at the beginning, and I was so hard in myself. And actually, the for every about I'd have when I was in bed, you know, first couple of days when you feel really bad and you're in bed, in some ways, that wasn't the bad bit, because usually I just sleep through that. And that's okay. When you were asleep. You were asleep. It was a few days between feeling like that and feeling like well enough to do anything, where I wasn't. I was just sort of mooching around feeling sort of non specifically ill. And I found those days really, really difficult, because I'd just be going, come on, Kiara, get something done, and I couldn't, and I'd get so upset and so frustrated and and Oh god, I just barely, hell. It was hard to manage something. As you say, it is actually helpful to have a label, because then you if you can, because then you know what you're dealing with, and you can find out all the information that there is about it. But without that, you're kind of in the dark, can't you? And that took me a long time to work out that when you feel well, you also can't do stuff, because then you get ill. And that's really frustrating, because, you know, actually, I feel all right and I want to so I find that one quite difficult. And also, if you then do set it off, not to give yourself a hard time about that.

Jackie Baxter  
In episode four, I talked to Jane and Chris from long COVID Scotland about research involvement they've been inputting into long COVID research. And here Jane explains exactly what they do

Jane Ormerod  
quite often, what we do in the early stages we advise on a range of things, language in the research application, its ability to interact with the participant, bearing in mind that people with long COVID, their span of attention, their ability to focus in on words, written, listening, TV, they tend to be limited. You've only so much energy. So any study really has got to take that into account. So we advise on things like that. We also advise. And we test out apps that the study might have, and we test out questionnaires as well amongst our members, and we give feedback to the researchers, because there's no good having a questionnaire around helping long COVID people if they can't answer the questionnaire because it's too long, it's too complicated, even colors, different words, they just don't fit sometimes. So we give our feedback around that sort of thing to researchers.

Chris White  
Chris talks about what the benefits might be of getting involved in research yourself, whether you are in Scotland, elsewhere in the UK or the rest of the world. Please do get involved in research into long COVID. And there are some links in the show notes of Episode Four that can direct you to some of the places that you can get involved. The benefits a kind of generally, people want to do something and want to feel valued and important. So that's a very simple, quick benefit. I want to feel as though I'm contributing. But there are other benefits. One study will give you first access to an app that might help you manage your condition. Because what will help me? I want something to help me now will actually be. Don't have the answers, but we're developing the answers, and you can be part of that process of developing those answers, or with the weight management program, one of the things that that includes is weekly support sessions with a dietitian. Often people at the moment are kind of saying, I'm left on my own. I don't have any support. I don't have any contact. So through that study, there's inbuilt support. And there will be a period at the start of it where people will be on a diet supplement rate, which can actually be quite expensive, because they're on a study that diet supplement drink will be provided free.

Jackie Baxter  
Next I talked to the wonderful doctor, Amy small she's lived through long COVID and is now trying to help others. Here, she talks about what you can do if you have long COVID And don't know what to do, a struggle for many of us.

Amy Small  
I think one of the things to do is to write down everything that's happening, you know, write down all the symptoms you have, and then try and break it down into the things that are affecting you the most. There's if you put yourself in a GPS position, you've got 10 minutes to deal with someone who's come in, and every aspect of their life is just a mess at the moment, from their mental health to their physical health to their financial situation, etc. And it can be quite overwhelming, because it just all looks terrible, and you've got 10 minutes, and how on earth you're going to deal with that? So I think sometimes trying to hone down a little bit, and it might take several consultations, and I think sometimes it's about empowering patients to say, Okay, can we discuss this thing today? And then I'd like to make another appointment to discuss this thing another day, and then trying to break it down into sections that feel more manageable. So if, let's say your breathlessness is the thing that is keeping you back the most, that you can't function because you're so breathless and that's making you worried and all the rest of it. But yes, you've also got aches and pains, your guts not working so well. You've got some weird tingling sensations. Try, to pick the thing that's bothering you the most, but keep a list of all the other bits to then bring and say, well, actually, these are also things that I'm concerned about, that I'd like to also tackle at some point, but acknowledge that it can't all be done in one session. And I think, as I said, if there are things like breathlessness and fatigue, those are brilliant things to go to chest Heart Stroke Scotland with and on the advice line, I've had brilliant feedback from patients. I've referred to them because they have time that, you know, you can spend 45 minutes talking to someone who really understands what you're going through, who can advise you, and they will be very honest about what they can't manage, but they might help you be able to advocate, you know, for yourself, to then bring that forward to the GP. So, yeah, I think it's about breaking it down and keeping lists and just keep going back. We don't know that you're stuck struggling, unless you keep telling us you're struggling. You know, if you disappear into the ether, we think you're better.

Jackie Baxter  
And also, what she would like to see in terms of care for people with long COVID

Amy Small  
I would like to see that everyone has access to multi disciplinary care. So I would like to see that GPs have somewhere to refer their patients to that that would then also be an educational hub. You know, whatever we learn from patients going to that can be fed back to GPS, that GPS can then understand and learn more we write to each other, and that's often how we learn. I would very much like to see the benefit system acknowledge this illness, and I would very much like to see our government really put this on the forefront as part of our COVID recovery. You know, we're talking about COVID recovery, and how is Scotland going to recover from this pandemic? And this has to be part of it. When you look at the sheer numbers of people living with long COVID and how that affects our workforce, how that affects us who have caring roles, etc, it's not just about the medical aspect. It's got to be about the bigger picture and the whole picture, and making sure that people can contribute to society in a meaningful way and feel like they're doing that in a meaningful way. Because I think there's no one wants to be at home, sick, not working, no one wants to be in that role. But sadly, that's very often what happens, and we need to help enable people to get better, and we need to help support them through that. So, yeah, I guess it's the whole picture, not just the medical one, making sure that we are nurtured and looked after.

Jackie Baxter  
We'll be right back. I'm interrupting myself for a second to tell you about long COVID breathing, the fabulous Vickie Jones and I have teamed up to bring you long COVID breathing. We are both passionate about sharing our expertise and experience of the breath and how incredibly helpful that can be with long COVID. We've worked together to develop a course that is specifically tailored to those with long COVID. It's a six week course with 12 sessions, all delivered online. The community feel and learning that we're all sharing is such a joy to find out more information and to sign up for our courses, workshops and other shorter sessions. Please check out the link below long covidbreathing.com or email long covidbreathing@gmail.com to start your breathing journey with us. You.

Jackie Baxter  
Next, I talk to Professor Nick Sculthorpe from the University of the West of Scotland about a couple of long COVID studies he is doing. Here he talks about the pacing study funded by the NIHR. So

Nick Sculthorpe  
one of the ways people try and avoid PEM is they track their own heart rate. And that's kind of, that's where the pacing idea comes from. And we've came up with a way that we could kind of do that for people you're trying to avoid doing too much, and if your heart rate is high for too many minutes in the day, then we'll send you a letter to say your heart rate's been high for and high is different for you, and it would be for me, and it would be for someone else. So it's individualized. It's not just we've set a blank out. That's the other thing that's worth just mentioning, is a patient is just a management technique. It's not an attempt to fix it or to cure it. It's just a way to try and manage the symptoms better. And if we can manage the symptoms better, and maybe people have fewer crashes, then that creates a little bit of headroom where they can start to recover properly, maybe at worst case, it helps you manage the things that you have to do better, even if it doesn't help you recover faster. And there's things people just have to do. You know, if your kids are at school, you have to go and pick them up. This

Jackie Baxter  
study is actually now looking for participants, so if you think that you might be interested, please do get in touch, and I will point you in the right direction. In episode seven, I talked to the lovely Susie bolt. She has recovered from long COVID and has now set up her rest, prepare recover program to help others to recover too. Here she talks about the importance of the mind and the body, and then I asked her for her top three bits of advice, all of which are worth listening to.

Suzy Bolt  
And so I'm a big advocate of saying to people, if you need medical help to get your mental health in place, go get it. If you need to also balance that out with talking, go get that too. Let's prioritize the mind first, because the mind is in control of the body to a lesser or greater extent. However you want to believe it. I know it's quite a challenging thing for some people to kind of take on board. I'm just pushing it all the time as the message go, get your mind in order, and then your body will be able to follow the right cue. You know, you're looking to get those kind of signals from the brain to say it's okay, you don't need to panic. Now, I think I have got a top three. My first one is educate yourself so there's enough interviews, videos, shared experience out there now that you can watch and listen from your bed and go, Okay, now that's interesting. If that's happening, I'm reassured or I now need to go and ask for this specific piece of help from my GP and be referred to, you know, like, educate yourself. What is this virus doing? What could be happening inside you? And let's get some tools in your kit around what to ask for help around. So I've got some great interviews that I did with Boon Lim, consultant cardiologist, should I say, and his brilliant colleague, Dr Melanie Danny, who's a consultant geriatrician, and they offered three hours of their time over two interviews, just explaining a lot of the things, not everything, but a lot of the things that are quite common that people are dealing with in this post COVID malaise. So yeah, understand dysautonomia and cast inflammation histamine. Diet, the role of antihistamines. Understand your gut, understand what you can do there. So education, that's my piece. Number one. Number two would be, really start practicing deep rest, like active deep, conscious rest. Practice it. Do guided meditations. Do your breathing work slow things down. The stasis breathing program is one of the most amazing programs that's out there for free. It's by Josh Dunst. I'm actually interviewing him in a couple of weeks, and Mount Sinai Hospital collaborated with him to kind of promote that, and it's free. And they talk about how to help retrain the body and the autonomic immune system into that kind of rest repair mode. And they've got a very specific set of protocols that they use for people with long COVID And they are accessing hundreds of 1000s, if not millions, of patients around the world. And it's free. So find out about things like that. Get into the idea of practicing active rest three times a day, and active. Rest isn't holding a phone in your hand, looking at Facebook whilst you're in bed. That's not active. Rest, okay? Active. Rest isn't watching a movie on TV, lying on the couch, that's not active. Rest really understanding, if I'm trying to calm everything down, I will need to do things differently. So get that, you know, really firmly under the bonnet of your beliefs. Get into doing some body work. Get into doing your yoga practice, even if it's just lying in your bed and kind of moving a tiny bit, soothe your body and your mind like it was a three year old having a panic attack, soothe it. And then the next one. My number three, is support. Don't do it on your own. Don't expect someone that does. And understand or isn't going through it. To get it, find people that do align. Find your tribe, get a buddy. Pair up. We've just set up something within my 360 membership now, where we're buddying people, maybe someone who's got a bit more experience with someone who's newer, you know, maybe there's similar sets of experiences, and they can kind of support each other. So that's something that you know is another layer. It's like, okay, you've got group support, you've got one on one support, you've got Facebook account support. The layers are important because not everyone in our lives gets it or is interested in

Jackie Baxter  
it. Next, I talk to Rachel Whitfield about her long COVID recovery. Her initial story is, I'm sure, very familiar to lots of us. Through a lot of her own research, she has learned a lot of things, both about the illness and her body's response to it, and she has actually now recovered well,

Rachel Whitfield  
I think there's basically then two parts to getting out of it. One is to switch the fight or flight off, which is why things like meditation and being calm and reducing things that you have to do, and reducing physical exercise and all those things to get you to a place of calm and less symptoms. So I think there's that part. But then, of course, you can't just live your life doing nothing. So the second part, then, is about, how do you build back up? And I think it's almost like if you're not careful, I think I almost have post traumatic stress, where those crashes were so traumatic that your brain then remembers them, and then you get the fear of, well, if I increase, is that going to happen? And in my view, actually, I worked out that the fear of overdoing it actually created, certainly some of my later crashes. When I look back, there are things that definitely didn't add up. And the only explanation for me was that I was expecting pm, so I started to get that when I saw the breathing physio. So I saw someone on Zoom, and I genuinely didn't think that I had a breathing issue. I was a bit short of breath, but I was only doing it to rule stuff out, actually, because I was on a mission to get better. I'd made a decision, and so I was trying everything that anyone mentioned, just in case. And when I met her online, she said, Oh, you look fine. I had a bit of a sun tan because I'd sat outside. And then she counted my breaths, and she said, Are you a mouth breather? Are you a nose breather? I said, I think nose and I saw myself sneaker a breath through my mouth. I had no idea. And I think maybe that's it. People don't necessarily know. COVID is assumed to be just a respiratory disease, so when you didn't have the cough, tests don't reveal anything lung damage. I don't know. You don't put two and two together.

Jackie Baxter  
I then asked her what she would do differently, with the advantage of hindsight, do you know

Rachel Whitfield  
what? I'd have listened more so my mum warns me about post viral fatigue. And to be honest, I poo pooed it and went, you know, don't that's just typical mum. My partner told me to rest, and I poo pooed him as well. My partner on a couple of occasions. And I think you really careful, because he did say, you know, I think it's worry. I think that's my anxiety. And I was like, Don't be ridiculous. What you're saying, you're saying, it's all in my head. You know, there's interpretation, isn't there, and something said in one way, and you hear it in a different way. But I think if I take anything from this, it's actually the realization that an outside perspective can sometimes be the link to the blind spots that you might have. So I think I would listen to him if he's listening, listen to him more Google less. Some of the Facebook groups have been a godsend, because they tell you about some of these things. But also, there's a downside that you can convince yourself. I mean things that are even more sinister, long COVID, hideous, but some even more sinister things I think would have thought about social media, maybe, and how I used that, because it can completely freak you out.

Jackie Baxter  
Next up, I talked to Claire Hastie, who founded long COVID support. She talks about what people with long COVID need and what she is fighting for. She also talks about why it is so important that research into long COVID involves the voice of lived experience. And I remember

Claire Hastie  
having a conversation with Barbara saying, right, we need a three word slogan. And I was like, research. And was like, we were just trying to rack our brains. Let's think three things, beginning with our So Rob and I brainstormed and came up with rehab research and recognition, which became our mantra and our battle cry, I suppose, for what we wanted, and rehab, in its broadest sense, helping us get back to our former lives, be that through return to work or education as well as actual treatment, be that pharmaceutical, non pharmaceutical, physiotherapy, whatever it was, just get us back to our former lives. Invest in research to help us do that and then actually recognize that we exist. Because at the time, nobody knew of our existence. The message was, and actually still largely is, you'll recover within 10 days or two weeks, or you might die. And the mantra was, again, very much, that if you were young and healthy and fit, the view was that you'd be fine. And you might be on the sofa for a few days, but then you'd be fine. And so we had to really, really shout for our existence to be acknowledged. Something that I really want to be a legacy of, this actually, is that we collectively have been involved in so many research studies, or indeed, notably, not included in some and I think we've seen the good, the bad and the ugly, and you'll have seen them the same as we have, I'm sure, when you get sent to the survey to fill in and you just think, oh my god, your heart sinks. You think this has not been seen by anybody with lived experience of long COVID Because they're asking the wrong questions in the wrong way, of the wrong people at the wrong time, whatever it is. And you think what an unethical waste of public funds and publicly funded expertise. I can't even describe the word what it is, it's I feel anguished. I feel appalled. I feel angry. We have got so little research funding in the scheme of things, and that needs to absolutely be directed to what is on the critical path to helping people get treatment. We don't need any more symptom tracking apps. We don't need anyone else to tell us what symptoms we have. We know this. The best research paper on symptoms was done by the patient led research collaborative, and it is unequaled in terms of the scale and the number of people, but also the geographical diversity, the number of symptoms that were trapped and identified. So we know what we want people to look at. We know how we want people to look at it, and we want to make sure that there are learnings across other chronic illness in both directions, as in, we want to learn chronic conditions. Yeah, I can't emphasize enough the importance of the Nothing about us without a su mantra, and including patients from the beginning as equals at the table.

Jackie Baxter  
In episode 10, I speak to Amanda Finley from the US. She set up a support group and is active in trying to help those struggling with long COVID Here, she talks about how important it is to stop transmission of the virus in the first place.

Amanda Finley  
But people, they've got pandemic fatigue, which is, I don't know as far as symptoms go, that is at the bottom of the list. I can't speak for any other country, but in the United States, we have people who just said, Oh, I'm vaccinated. I'm just going to do whatever now. And this is what gets me the most. If you get COVID, your chances are fairly good. Of course, your kids might get it, your grandmother might get it, your friends. But what happens is that transmission carries forward and it will kill someone you have never heard of, you'll never meet, and I'm not okay with that. You can't control you really, you have so little control over whether you get it because no one is watching out for you, the best you can do is to avoid spreading it. That's what gets me the most. We all know what we should be doing to reduce the spread. We all know, and I think that's really what's holding true right now. We all know the answer. You don't need to wait for the CDC or for who to release guidelines. We all know what to do, but we're just so done with this pandemic that we don't want to do it anymore. That's heartbreaking. I mean, if you could save just one person, it's worth it.

Jackie Baxter  
Next. I think about the other people who have been impacted by long COVID, partners, husbands, wives, family and friends. Here I chat to Ian, his partner has a chronic illness, and he chats about how their relationship works around this and how they function as a team. We'll be right back. Hey there. I'm just jumping in for a second to see if you're enjoying this episode. If you're finding it useful, maybe you would consider sharing it somewhere, a friend, a group, or even on your Twitter feed. If everyone was able to share just once, we'd be able to get this information out to even more people who really, really need it. So please consider sharing some work if you possibly can. I hope you enjoy the episode. Thank you so much.

Iain  
My advice to someone who's a Partner of someone with long COVID would be, you know, when you're doing the airplane safety thing, if oxygen fails in the cabin, wee masks fall down like, put on your own mask first. And you go, what if my child's not got their mask on, or someone's struggling, or they say, put on your own mask first, because you're of no help to anyone, if you're worrying about everyone else's masks. Then you collapse in the ground, unconscious in the middle of the aisle. And I feel that while it might be counterintuitive, like looking after yourself is probably one of the best pieces of advice I can give, and finding out ways where you can both look after each other healthily, like Cal, early on was making sure that even in a bad spot, there were other friends we could call who. Could go and hang out with or, if I was feeling completely spent, I could go and take a day and clear my head or play some board games with my friends. One other thing I wanted to kind of say is that something that I think is really important for everyone is it's okay for it to be terrible now and then, like, it's very important that, particularly if you've got something that you're dealing with for a long time, occasionally, when the mood takes you, it's important to be able to say, this is terrible. This is awful. Insert profanity here. I don't like it. Doesn't need to be all making the best of a bad situation all the time. It's a really good valve to be able to let off, to have a rant about it and kind of complain and get that frustration out, because it is hard and it is terrible, and it's not worth just holding that all in until it bursts. And this goes for everyone involved. This goes for the person who has the illness, the partners it is difficult. And I would say one of the hardest things is not knowing at what speed or how it might get better. Often, when you hit against a problem like your mind can circle back to that place of, when is this going to get better? How is this going to get better? Everything is awful, and it's about allowing that frustration when it's helpful and healthy, but also either knowing as a person, going through it yourself, or as a partner, we used to spot that spiral early and kind of distract from that or go on to another topic, because sometimes talking about it doesn't help.

Jackie Baxter  
In episode 12, I chat to Kelly Mitchell, the breathing, PT, breathing is such a big issue for many people with long COVID And she chats about how breathing can affect so many parts of our bodies, and that fixing a faulty breathing pattern can have huge benefits. This has been a massive game changer for me in my long COVID journey. Here, she chats about the symptoms and also give some general advice, of course, you should get yourself properly assessed, if possible.

Kelly Mitchell  
The most common way is symptoms, really. So if we talk about long COVID, if you've been to your GP, or you've seen a whole range of specialists, and they've done all the tests on you, and they're quite happy that there's nothing medically underlying, but you still have shortness of breath, chest pain, chest discomfort, pins and needles in your fingers, toes around your mouth, dizziness, brain fog, fatigue, post exertional malaise, those symptoms are potentially being driven by a faulty breathing pattern and a resulting physiology that happens. So it's more to do with the symptoms that you have. The easier group to pick out are those guys that talk about things like, I've got air hunger. So they talk about things take a big, deep breath, and this inability to take a satisfying deep breath in or shortness of breath on minimal exertion, despite being previously fit and well before they can't catch their breath. They're the guys that are easier to pick up because they're the more common symptoms. But not everybody who has a breathing pattern issue has respiratory symptoms. You know, I've had loads of people say to me, if they reach out on social media, they'll say, my breathing is absolutely fine. I don't have any respiratory symptoms. Or you might, do, you know, you may well actually have an underlying issue. Number one is, breathe through your nose. Your nose is really cool and it's designed for breathing. Your mouth, isn't it's a great backup. We need it at times, especially during high level exercise, but your nose is actually what is designed to breathe. So your nose will heat the air, clean the air, wet the air. Really important. That's how your lungs like it. They don't like dry, cold, dirty air, which is kind of what happens when it goes through your mouth, because it doesn't have the capabilities to do those functions. The other thing the nose does is it releases nitric oxide, which is a really cool gas, which opens up blood vessels and airways and gets everything nice and open. And if you bypass that, you don't have the benefit of the nitric oxide. So that's really, really important to make sure that you are nose breeding. The other thing nitric oxide does is sterilizes the air. So really important first line of defense against anything nasty in the air, so super important to breathe through your nose. How do you then re establish nose breathing? If your nose is completely okay, is you just practice so you would do that in a relaxed, calm way, whether that be lying down on your sofa, completely chilled, and you just take one nose breath in and out. And if you can do one, do two, and if you can do two, do three. If after that, you feel like I need more air, then just flip back to mouth breathing. You just slowly start to desensitize yourself to it, and just keep trying to increase it. Slowly, slowly so. Yeah, the second thing is to think about your respiratory rate. So a normal respiratory rate, as we said, is around eight to 12 breaths per minute. If you've got a problem with your breathing pattern, you may struggle to pull back rate. So people use different breathing programs and apps, and what they find is that they become very air humbly when they try to pull back their rate. But that's because their body wants them to breathe more, and they're saying, No, we're going to breathe less. And they get into a bit of a battle with it. If you are in that boat, you need somebody to guide you through it, more than likely, so that somebody needs to be rehabilitated for you free from your breathing perspective. But yeah, getting your rate down, so breathing nice and slowly. And then the third thing really is to breathe into your tummy. We might have heard it, abdominal breathing, tummy breathing, diaphragmatic, breathing. So breathing low into your tummy. So at rest. We should not be using our chest at all. You we don't need it that our accessory muscles, so muscles in our neck and our upper back and our chest, they'll elevate the rib cage rather than breathing low down into your tummy. So when you're at rest, you shouldn't have any movement from up here at all. So to assess yourself, get in front of a mirror. Put one hand onto your chest and one hand onto your tummy, and just have a look and see what's moving. And if you have upper chest elevation rather than low down tummy movement. Chances are, you know, you're an apical breather, and that is a form of dysfunction. So yeah, you need to get it sorted.

Jackie Baxter  
And lastly, I chat to my friend, AJ. She was diagnosed with post concussion syndrome around three years ago, and has some amazing tips about how to navigate recovery of a long term condition. She's an absolute inspiration. She chats about the feeling of guilt she has, about the impact her illness has on her partner, and also how she tries to keep herself sparkling day to day. It

AJ  
was bad enough that my life changed because of what happened to me in an instant. But the longer things went on with JP, I could see that he was doing so much to help me. It was very, very difficult accepting that I need help. But in a way, I felt really, really guilty because his life had to change so much to accommodate my health and what I was saying earlier about not knowing your self worth. I think it's hard to accept that you need help. It's hard to let others in and actually do the help for you. And I say this day, I don't know why JP is still with me. So many times I've tried to push him away. I've said to him, Look, don't feel like you have to stay in this relationship out of any sense of loyalty. I don't want that. If you don't want to be in this, that's okay, and I'm prepared for you to walk away, because it's like I lost sense of my own self worth, and I just thought, No, you didn't sign up for this. Yes, we've been together for years, but this wasn't part of the plan. But then over time, I think once you open yourself up to that help, and I think we've had a few very open conversations, and over time, I've learned that, you know, I'm still valuable as a human being, just like everybody is. We're all equally in that respect. Nobody's better than anybody else. And then I think once you realize that, yes, something life changing has happened to you, but that's not all of your life. That's not all of you. That's one part of it, and somebody still loves you, and you love them back, and it's okay to let somebody in and just, you know, realize that this person is here for you. He wants to be here to support you. He's doing it because He loves you. It's not because he feels that he has to. And I think that, I think just comes with time you're on. And my brain injury recovery, one of my friends phoned and he asked me, What are you doing every day that makes you happy? And it was like a light bulb moment. I just thought, I don't know what makes me happy anymore, because there's so much about my old life that I'm just I don't have the ability to do anymore, and I don't know what it is that makes me happy. So I wrote a list, and I put it on the fridge, and I've actually got it here. I can tell you some of the things that are on it. And for me, it's just about it doesn't have to be big, grand moments. It's finding happiness in the little things that you can do every day. So initially, when I had the brain injury recovery and I thought, Oh, I don't know what makes me happy anymore. I really don't know when I had all these emotions that I just felt I very much was grieving for the old me and I didn't feel like myself. So it was almost an opportunity to draw a line in the sand. Okay, what can I do that makes me happy now? So when I talk about all the simple things, it really is. So one of the things at the top of my list is having Sunday copies with my family. This is something that we've done for years and years. I've got a massive family, and it's very, very difficult for me now to be around a lot of people. It gives my brain challenges. It's difficult, but it's one thing that I keep. Doing when I feel able to, because it is being around my family and having that support is so important. Another thing for my list, rather than it being a weekly thing, something I can do every day, is drinking hot chocolate in my favorite mug. And it is, it's such a tiny little thing, but to me, I can sit on a chair that I like, get all nice and cozy with my nice cozy blanket, I can look out the window and see the nice greenery. And it is just, it's the simplest things. It is literally write yourself a list of things that make you happy. Episode

Jackie Baxter  
14 is long, COVID Creativity. I'm not picking a snippet of this, as all of my contributors are equally awesome, and I just can't recommend enough that you listen to it in its entirety. Thank you so much for listening. If you haven't already, please do listen to the full episodes. And I hope that this may have whetted your appetite for some of my guests, the long COVID podcast will be back in January with more awesome guests. I hope that you are having a restful, peaceful and COVID free festive season. Thank you. 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 and doing all of this myself. If you're able to, please go to buy me a coffee.com. Forward slash long COVID pod 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 you get in touch and love to you.

Transcribed by https://otter.ai