Long Covid

So much is still misunderstood about Long Covid and how it impacts people today…and because the effects are not always visible, this can trigger shaming behaviours from those who don’t understand.  We speak to Founder of First Aid for Feelings Thor A Rain who brings their insights into not just what is happening in our bodies, but how we can manage our symptoms (and the behaviours of others!)

About the Show

Each Thursday at 4pm, we broadcast on LinkedIn and YouTube, with the podcast released on Spotify, Apple Podcasts, and more. 

Then every Friday at 8am, you’ll also receive a bonus podcast episode - a carefully selected recent conversation offering practical insight and timeless support.

Wherever you listen, you’re invited to pause, reflect, and reconnect: 

PODCAST: https://mentalhealthmatters.buzzsprout.com

YOUTUBE: https://www.youtube.com/playlist?list=PL5dbYRwciNQ3c2hZwpsfxnNIvpijH4S2b 

Today's show is hosted by

Dr Audrey Tang www.draudreyt.com  @draudreyt

and Judith Crosier https://www.facebook.com/profile.php?id=61556005102240

Guest Expert

Thor A Rain: First Aid for Feelings

https://firstaidforfeelings.com/ 

Transcript

SPEAKER_01 0:10

Hello and welcome to Mental Health Matters. I'm Dr. Audrey Tanning. And I'm Judith Crozier. And this is the show where we talk about all things mental health and well-being, but we take out the hot takes and the quick fixes. It is just a practitioner-led conversation. Today is a really interesting topic, and I know I say that every week, but we are talking about long COVID. And the reason why I find it so interesting is because it seems to have dropped off the radar.

SPEAKER_04 0:36

Yes, it does a bit.

SPEAKER_01 0:38

You know, it it was such a big thing whilst COVID was going on. What are the after effects, so on. But I just I'm really curious to learn a bit more about this. What are your thoughts or experiences with long COVID?

SPEAKER_04 0:54

Well, it's definitely a thing, and I was diagnosed with it actually. Yeah. I had COVID in March 2020, as you know, and um then was subsequently diagnosed with long COVID in about the September, October. Um, and I attended a few clinics, and you know, the the clinics were weren't in my own GP surgery, but they were run by GPs who who openly said we don't know really much about it. So it was basically monitoring, they couldn't really do much else.

SPEAKER_01 1:29

Because you're just finding out about it, yeah. Yeah, yeah, yeah.

SPEAKER_04 1:32

So six years down the line, I suppose they have a lot more data. And um some people's symptoms have you know that I that I've heard, and I belong to a long COVID group, which I don't anymore. But or at least if I do, I never see anything from it. So that kind of tells you something. But um some people apparently are still debilitated from from that, but some people have really bounced back, including myself.

SPEAKER_01 2:00

Yeah, well now this is what we're bringing our guests on to talk about. We welcome back Thor A. Rain, and they are a pain coach. That's the main area that they work in, but they also support people going through long COVID. It's uh ME is another one. But what Thor's going to be talking about is the link between potentially long COVID and ME and the development of other issues which are not long COVID, if you see what I mean. Yeah, you can diagnose it as ME. Yes, yes. So I think that might also explain a bit of it. Maybe people are being diagnosed.

SPEAKER_04 2:35

Well, exactly, uh or being diagnosed with other things because a lot of COVID kicked off. Yeah, and hidden illnesses, you know, a lot of the symptoms are very, very similar. And I look back now and I think, could could that have been something happened? Perimenopause, maybe, or something. So it will be an interesting chat.

SPEAKER_01 2:53

So we are going to bring Thor A. Rain, who is the founder of First Aid for Feelings, on right now?

SPEAKER_04 3:04

Hi, Thor, it's lovely to have you back on the show.

SPEAKER_00 3:07

Hello, both of them, thank you.

SPEAKER_04 3:09

Oh, brilliant. So um, I'll just just jump right in. Um, the work that you do, how does that help people uh when it comes to supporting them with long COVID?

SPEAKER_00 3:21

Uh thank you for the question because I think it's a really it's sort of an open question, but it's also very specific. Because I am a pain and fatigue specialist. And uh and obviously with long COVID, pain and fatigue are key symptoms, but it also means I work with other types of conditions where pain and fatigue are the key symptoms or key markers that people are dealing with. So it gives me a perspective that isn't through the diagnosis, but it's actually through the symptoms. And because I work with symptoms from uh what's called a biopsychosocial perspective, which is biology, psychology, and social context, right? It also means that I can look at pain or fatigue as well as the symptoms that often come with these two key symptoms, uh, through that lens of what's happening in the body, so anatomy, physiology, what's happening in the social context. And when we talk about long COVID, obviously COVID exists in a cultural context. There's lots of social markers relating to long COVID specifically, as well as the COVID infection itself. So being able to look through that lens as well as the kind of behavior and beliefs we bring into our everyday, and then of course, our kind of mindset, the mental impact, the mood. So when it comes to pain and fatigue, it isn't just the oh, I'm feeling a bit tired, or it isn't just like I'm exhausted. There's actually uh sort of a 3D reality to that experience. That's and I think my both my academic training, because I did my MA in cross-cultural psychology as well as my kind of clinical training, it brings in that perspective, and I think that's something I'd like to just touch on gently today, because we often think that long COVID is a very personal experience, and of course it is. I mean, we you know you are the one who is you know exhausted or in pain, but also we see differences across different cultures, different countries, different continents, and we forget that being a woman, being a person of colour, being uh working class as opposed to from upper class, all these factors shape the experience of being ill. And I think that was sort of the unique aspect that I bring into my work through the lens of pain and fatigue, rather than I'm long COVID specialist, or I am you know and me specialist, or I'm a cancer specialist. You know, it's like those are conditions that I support, but it's always through the lens of the symptoms, which I think is great actually, yeah.

SPEAKER_01 5:49

Because that way you're almost dealing with the person and how the symptoms are presenting, taking the diagnosis out of the window in a way, because I think sometimes it's too easy to go, oh, you're diagnosed with this. Yeah, take this treatment and off you go. So, no, I think that's that's really good.

SPEAKER_04 6:05

Yeah, absolutely. Thank you. And why do you think that long COVID is so hard for people that have it to live with, and also for others to understand the struggles that they go through?

SPEAKER_00 6:20

Well, I think there's a there's a couple of layers to it. One is that uh long COVID is in essence a post-viral condition. So if we think about it, just where it sits within the medical kind of framework, it is a post-viral condition, and we have a long history of not understanding post-viral conditions, whether that's uh MECFS, which is often uh kicked off or um the catalyst is often Epstein Bar virus, you know, we have conditions that seem to be activated through a viral infection where the body isn't able to kind of process and complete the infection and ends up in this long COVID or postviral infection kind of state. And so long COVID and people kind of not recognizing it, not taking it seriously, all that sits within the kind of cultural context of not um recognizing the impact and the reality of post-viral situations or postviral syndromes. So I think that's one aspect of it. I think also long COVID came through uh you know a culture shock. I think none of us came through the 2020-21 experience without some sense of trauma or shock, you know. So there's also that kind of just catching up with ourselves on that, and then there is also the fact that the more COVID infections you have, the more likely you are to develop long COVID. So there's there's that kind of aspect to it as well. So you may have been ill with long COVID once, sorry, with COVID once, and then you recovered. Maybe you got a second time, you recovered, by the time you got to the third time, which is when the the risk of long COVID really increases if you've had COVID three times. So people are like, well, you recovered the last couple of times, you know, why is this any different? So not understanding the cumulative impact on the actual body from dealing with something like that. So I think there's a few different aspects to why we struggle to take it seriously, why people don't kind of recognize the severity of it, uh, and how that kind of well, you were okay last time, why is this so many different can be a really confusing reality for us.

SPEAKER_01 8:28

And that the biopsychosocial approach really does sort of contextualize that so beautifully because it is that exactly what you say, you recovered last time, what's the problem now? And that lack of understanding that we all have as a society of post-viral diagnoses, infections, or things that can can spring from them is it's worth talking about. And you you talk about treating the symptoms, which I think is so so important. Is there anything unique though, about the pain and fatigue or the symptoms of long COVID that differentiates it from something like ME or or something else where similar symptoms might present? Not necessarily for people to get a diagnosis, but just it how does it feel different? So we know, I think.

SPEAKER_04 9:16

And for other people to understand why it's so debilitating.

SPEAKER_01 9:18

Perimenopause, another one is it can be pain, fatigue, and so on.

SPEAKER_00 9:22

Absolutely. So thank you for that question because I think it's a question we don't ask often enough. Um, and I think so for starters, just to give it a bit of context, there isn't a globally agreed definition of long COVID.

SPEAKER_04 9:37

Yeah.

SPEAKER_00 9:38

There isn't a globally agreed diagnostic criteria, even between the World Health Organization, the main European health bodies, the CDC Center for Control Disease, um, uh disease control in the US, you know, even just you know, whether you get diagnosed on ONSAT or after you've been ill for two months or three months, even the global bodies uh you know are not agreeing on the diagnostic criteria. And then also that there isn't like a test. Uh, this is a diagnosis, what's often referred to as diagnosis by exclusion. Yeah. So when we've ruled out this, this, and that, this is where we end up. So then, if we come to the pain and fatigue question specifically, so uh the short answer is no, because pain and fatigue is I often talk about the immune system, it only has a certain number of letters in the alphabet to communicate any issues. So like cold has got like the alphabet of snuffles, mucus, coughing, temperature. Yeah, other conditions have got you know pain and fatigue, like the X and the Y in the alphabet. So if we look at how the body communicates issues, yeah, pain and fatigue shows up in lots of different conditions.

SPEAKER_02 10:52

Yes, yes, yes.

SPEAKER_00 10:54

So, in that respect, there isn't anything unique about pain and fatigue when it comes to long COVID. Saying that fatigue and pain isn't just fatigue and pain. So I talk about five different types of tired, and the answer isn't always to go to sleep.

SPEAKER_01 11:13

No, yeah.

SPEAKER_00 11:15

And so if I just run through quickly, would that is that now a good time to run? Yes, definitely. Yeah, so the five different types of tired are first of all, uh physical tired. So I climb a mountain, I am tired. Yeah, uh, it's that physical exertion, and the the clue here is that often it can feel quite nice. Yeah, you know, it's like the tired. I feel like, yes, I feel tired on my body, and it kind of like feel good, kind of tired. And I know that if I eat or drink or rest and sleep, that tiredness can be kind of completed and repaired or restored. Yeah, we then get wired and tired is a very common phrase. We tend to know what that means, wired and tired. Oh, I think I'm gonna be able to do it. And your body is going, I'm just so tired. Yes. Can I just sleep, please? But it's like the brain is so fast that it actually body can't drop into a deep sleep. Or if you fall asleep, you wake up after two or three hours. And if at any point we can have time to go into that a bit deeper, there's a lot of uh clues in how you can deal with that. Then there is emotional tired, and I often describe that as this sort of like they're kind of tired when you're doing something and sometimes like pulls the plug. It's like you get drowned suddenly very quickly, uh, or like you, you know, the phone rings, uh, you're feeling reasonably okay, you see who's calling, and you just go, yeah. Uh it's that kind of there's an emotional aspect or social aspect to that tiredness. Then there's environmental tired. So that could be the example I always use. If you have the washing machine in the kitchen and it goes on spin and you walk into the kitchen feeling like, you know, alright, stand next to that spinning washing machine for a while, and you will feel the tiredness just processing that level of vibration. Or you go into a shopping mall and there's lots of noise and sounds and lights and things, and you could just feel tired from the environment itself. Or, like, you know, you are in a you know, you're trying to sleep in a in a room, like I was working with somebody the other day, uh, and she had a stack of boxes from when she had moved in at the foot of her bed. Oh god, but the first thing she saw in the morning, the last thing she saw at night was like I haven't unpacked those damn boxes, you know. So there's something in your environment that activates tiredness, yeah. Processing stimulation, so sensory overload, particularly for people who are neurodiverse, this is a really common thing. Yeah, yeah, yeah. The final thing is repetitive tired. I mean, no longer repetitive strain injury on the wrist if you stay on the keyboard too long. But anything, if you sit too long, if you're laid out too long, if you stand still too long, the body doesn't like to be static. And if it's static in whatever position for too long, it'll kick out fatigue syndromes or symptoms, sorry.

unknown 14:06

Yeah, yeah.

SPEAKER_00 14:07

Uh, and actually, the answer there isn't to lie down, it could be to move, it could be to do something different. So the response to the tiredness changes depending on what kind of tired you're feeling. And of course, you can have a little bit of a cluster, a combo, and then it's like, okay, which one do you do first? Do you you know you move first, then you eat something, then you you know look at you know, some emotions, you look at your thoughts, and then you sleep. You know, it's like how do you sort of uh work through the layers of fatigue that can sometimes be really entangled?

SPEAKER_01 14:39

This is one of the most important conversations we've had actually on this show because I think it's so easy for people to go, I'm tired. Yes, I'm fatigued. The word, that's the word, but to really unpack that complexity, it helps you because it is that am I wide? And just as a personal example, we had an event on Tuesday, but then I was teaching Wednesday morning. So usually after an event, I will get wired and tired because my adrenaline is still going, but I know about an hour later I will crash and then it's like that lovely feeling of you know, nice physical time. But because I had to teach the next morning and I had to be up very early, the whole night I was just wired and tired because I couldn't, like my body wasn't allowing me to crash, couldn't sleep because I had to be up the next day. So I think that is the the way you described all of those, I think will be resonating with people. And I think it's the understanding for each type of tired, we need to do something different. Yeah. There's no point me switching the washing machine off if that's not causing me the problem. You know, it's it's that sort of thing. Um, just to come back to the invisible illness aspect of this, so with people who have an invisible illness or a diagnosis of long COVID or ME or any of those, often the tiredness, in whatever way it presents, can actually take away a lot from what they used to do. Yes. And there is that feeling, which adds to the complexity of I used to do this, why can't I do this? I want to still do this. How do you support people grieving almost what they could do?

SPEAKER_00 16:17

Yeah, so I think this is a this comes to the question of identity, but I just want to tag into that. Part of that identity understanding is also your literacy. And I know we talked about that when I was on uh you know on your show before. So being able to um sort of health and emotional literacy, so understanding health information, even just like labels on medication, but also what is happening in the body. So, like, uh, and then the emotional literacy is like how am I feeling about myself, how do I know to articulate and name the emotions I'm experiencing? Do I understand my thought patterns? Are they helpful or unhelpful? That kind of stuff really can shape how you can respond to a shift in identity, which comes from being I'm well and healthy, and my identity comes from being good at my job, or my identity comes from you know, lots of doing, which is a very Western culture thing. You know, we're very attached to our work identities, uh, and then when we become ill, particularly with long COVID, which often affects our ability to work, yeah. Uh, we've lost our doing credentials, and then it's like, well, who am I? And the health literacy, for example, knowing about things like mitochondrial function. So, mitochondrial function is basically your ability to produce energy, or the cell's ability to produce energy. And this shows up a lot in long COVID and other fatigue-related symptoms. If you don't understand or know that there's something called mitochondrial, you may not understand that you can go and do something, you can feel fine the next day, but actually, because something called post-exertional malaise, you are their knackered three days later.

SPEAKER_02 17:58

Yeah.

SPEAKER_00 17:59

So that kind of the delayed onset of fatigue can be really confusing. So then, and I remember when I was ill because uh, like I was something I shared before with you before, in my 30s, I was ill for about seven years and I fell ill overnight. And that kind of not understanding the way the body works meant that I was doing lots of behaviors and I was getting really confused about what I was capable of and what I wasn't capable of because I didn't understand sort of basic mechanisms in terms of how the body works. So that's in terms of the things that can really shake our identity, yeah, yeah. And then there is that kind of you know, that kind of the five stages of grief, yeah, the the cobla Ross uh thing, you know, that kind of denial, anger, bargaining, acceptance, or depression, acceptance. Yeah, you know, that applies to things like long COVID, because that kind of death of identity has its own process in the same way that death of a loved one. And that's not only about our own identity, particularly in close family dynamics or you know, loved ones, it could be your partner who's ill. So it's not just that they are grieving, you're also grieving the partner that now has long COVID. And that could be because suddenly you're doing lots of care responsibility, it could be that they are so inside their own experience that they are not able to be affectionate. Sex is you know a really complex thing when you are dealing with health issues. So grief can happen both to the person experiencing it, but also the people around them. And I think that's also often something we don't often recognise or talk about.

SPEAKER_01 19:38

And yeah, bringing up those two points there: one, the physical, what's actually going on in the body and the understanding of that makes a huge difference because that's where somebody can learn to manage their symptoms with, oh, I know I have a crash three days later, therefore this is how I do it, but without even knowing that that's just how my body functions, you're not going to be able to do that. But your other point also was the whole my identity is linked to my job. Yeah, and that's a huge, huge issue. So not only are you having to relearn how your body is functioning or learn at all how your body's functioning, but you have to then change your mindset to find a different identity, and which I know is it sounds silly because our identity is not actually what we do as a job, it's who we are as a person, but that's really hard for a lot of Western leadership brains to be able to understand. We are gonna be keeping you, Thor, and we're going to go to a clip from the last time Thor was on the show.

SPEAKER_04 20:42

In your experience, what are some of the biggest barriers that still exist when it comes to expressing our needs and wants?

SPEAKER_00 20:51

For me, I think the first thing is um a role model, seeing other people do it. You know, I think as children we learn from the grounds around us and from others. And I think we can talk a lot about I mean, I've written the book, I mean, I literally wrote the manual, first thing for the manual. Um so I think books and podcasts and uh those kind of cultural products serve a purpose, absolutely, but also sort of human-to-human talking um and learning from the people around us as well. So I think this is also why I show up, this is why I speak up. Um uh because people hearing you and I talking about feelings and how what we found useful, what we found difficult, people can either relate to that or go, oh, I'm so that's so different from me, or that's exactly like me, or maybe it's a little bit like we can learn from others, so seeing it role models, I think, really matters. So I'm really grateful to people like you doing this podcast where we can talk and there's a human voice beneath the message. Um I think also the other thing is um the kind of cultural beliefs. I think because I work internationally, I work with people, I'm a pain and fatigue specialist, so I feel almost. Consultations by video or phone and I work across, you know, other North America, South America. I've got people I work with in Africa and Europe, even sometimes over there in Australia and New Zealand, and actually recognizing that there are cultural differences. And recognizing that particularly like for people like in the UK, you know, the stiff upper lip is starting to crack, but it's still there. So that there are cultural aspects, I think, particularly here in the UK, I find that it's very different from what the people are supported from the US and Canada. There are different sort of they're more comfortable talking about stuff, so there are other barriers there, but I think in the UK is it's there's a cultural component here as well.

SPEAKER_04 22:45

How do you help people reclaim their identity then? What we were talking about before, you know, it I think it is easy, and I certainly did, you know, I I I went from being someone who was quite active to to someone who couldn't really do anything. So um how would you help that without and this this I never did, but without being that person that that that that they say, oh you know, I've got a long, I've I've got long COVID, and that's almost the first thing they ever tell you, and that's that's they then become they then take on a different identity of their illness. Yes. Um so yeah, there's there's two different extremes there. How would you help someone in that situation?

SPEAKER_00 23:26

And I love that you brought this up because it's very interesting that sometimes what we do when we kind of lose our work identity, we take on our diagnosis identity. So our diagnosis becomes our new identity. And you know, I've worked with people who've got, well, this was back in the day when we still had filing cabinets as opposed to you know, you know, online cloud storage. But you know, I would work with people who had like filing cabinet drawers full of medical documentations, research papers, and you know, so so the ones became their job. Oh no. I don't know what clip you were playing, but you may have shared, you know, my favorite question always is is it helpful? Now, educating myself, informing myself of what's going on in my body, helpful. Becoming kind of obsessive about it, almost like escaping into that kind of oh, I'll just do lots of research and that becomes my who I am, unhelpful. So I think that first of all, kind of naming that can be really important, and then recognizing with compassion that we're not doing that because we want to be whatever, we're doing that out of fear. Yes, we're trying to find a sense of self, we're trying to establish something because we've lost something. So the way I always work with people when we start is we do with a few start with a few things. We start with a symptom assessment. So I've I have there's a questionnaire with 13 systems of the body, 10 symptoms per system, and we start to look at actually how are you doing across these different systems? And what can be really interesting is that people realize, oh, actually that system is fine, or that system is alright, or oh, I hadn't thought about that, you know. So we get us a more of a balanced perspective because the focus can be on everything that isn't working. Yeah, so we actually do a bit of our MOT, you know, what systems are working, what systems are okay. That can give a more balanced perspective and kind of naming what's the truth, what keeping it real, that that is really difficult, and that is really high, or that system is in a real, you know, you're scoring high on all 10 systems in that system, so all 10 symptoms in that system. So that kind of being able to kind of bring to our conscious awareness what's the what's the reality here rather than what's my fear.

SPEAKER_04 25:41

Yeah, okay, yeah, that makes sense.

SPEAKER_00 25:44

That's the first thing. We then go on what you know, we go on a journey, it's called the journey program. So we start by where are you now? We look at physical stuff, social stuff, behavioral stuff, mental mood stuff. So we look at you know, um uh concepts like uh the boat load, which you may have heard of. If you think about yourself as a captain of a boat, like a uh shipping, you know, um vessel, and you can see all the containers, you know, on there. We can start to look at what are those containers, what are the gymnastic predisposing factors, and there are quite a few of them in long COVID. Uh, what are your kind of cultural factors? Like what you know, South America has got one of the highest prevalences of long COVID versus like say uh some of the Asian countries, which are much lower.

SPEAKER_02 26:30

Wow.

SPEAKER_00 26:31

Uh Europe, by the way, somewhere in the middle.

SPEAKER_02 26:33

Yeah.

SPEAKER_00 26:33

Uh, you know, so what are some of the those factors? So, what are some of the behaviors that you have? You know, like those achiever patterns, those helper patterns, where you're using your energy in really unreal unskillful ways or unresourceful ways. Uh, and then some of the traumas you may be carrying, some of the other, if you've got asthma, you're more likely to have long COVID, you know. So we get a bit of a bit of a sort of an inventory of how you're doing, and then we start to look at well, what are flotation devices do you put in place to keep your boat afloat? What are the containers that are kind of quite easy to clear? Uh so we start to work through, get a sense of map making, where are you now? Then upskilling you, so the health literacy, but also creating a first aid kit for your journey, first aid for feelings, creating a compass for your journey, creating a map for your journey. So we use those things before we even start working on recovery. So that can take two or three consultations, and then we start to work through uh relationships, physical stuff, mood stuff, activities, nutrition. So we look at those who are gonna from a uh 3D perspective, uh, and obviously prioritizing which systems are the priority for you. So if it's like wired and tired, that's your key issue, then we start working with that. We start don't start working directly on maybe something else. Yeah, uh, so it's always um an individualized customized plan, but it's got the shared components of these aspects that I've named.

SPEAKER_01 27:58

Yeah, so that sounds seriously really impact people, yeah. And also it hammers the point home that the presentation of not just long COVID, but any illness is going to look different for different people. Yeah.

SPEAKER_00 28:13

Exactly. Just get it. I mean, I have said because I saw people recovering from cancer. So I've had people recovering from cancer have more in common with somebody who's got long COVID than one long COVID person to another. You know, it's like it is that kind of what and I often think about these as you know, different containers or different Lego. It's like what's your configuration?

SPEAKER_01 28:31

Yes, yes, and one of the I know one of the containers that sort of would sit very heavily on me is somebody going, Oh, you've got that, I have that too. This is what you have to do. Yes, exactly.

SPEAKER_04 28:43

No, it could be completely different, exactly, but it's the same, it's the same condition. Yeah, yeah. So interesting.

SPEAKER_00 28:50

And that's why it's that kind of question, is it helpful? And maybe have really like, I mean, I teach meditation, and there are certain situations when it's like wired and tired when it's really extreme. Meditation can actually be really unhelpful.

SPEAKER_04 29:03

Yes, it can.

SPEAKER_00 29:05

Yeah, and like if you're thinking of post-traumatic stress disorder, meditation can be really challenging. Frankly, harmful because it can activate the trauma, you know. So it's that kind of always coming back to this may be really helpful for you, but you need to test it. Do I'm always in favor of experiments, check it out. Yes, trust your own truth rather than sort of being forced to accept somebody else's. Yes.

SPEAKER_04 29:30

Yeah, and that really highlights that you're talking about meditation because yeah, it's it isn't always a good thing. Yeah, absolutely. Um, so what do you find people miss most about their old selves?

SPEAKER_00 29:43

Well, tell you what, it really varies because sometimes people really miss the social contact, which often tends to drop. For some, they go, Wow, so nice. Not having to go out all the time. So, for example, that's really that's something that can be a really surprising kind of consequence of being ill, that people kind of go, ooh. Um, so that yeah, so it really is very individual. But I think for people that kind of sense of identity is often what shapes uh where where where the loss feels, it's in terms of the doing aspect, it's in terms of being able to rescue other people. Uh so it's like those are some of the things that people tend to miss. Uh, for people, particularly with long COVID, uh, because the um the sense of smell and taste can be a really big one there. It's that actually symptom does show up in other conditions, by the way, uh, but it's less talked about. So that can be something that people really miss. And of course, you can have long COVID without having that particular symptom.

SPEAKER_02 30:49

Yes.

SPEAKER_00 30:49

But that kind of people really missing like chocolate cake, yeah. Or or the taste of coffee, or you know, so that can be something that uh is less common with other conditions, can be more specific to long COVID. So it could be something like that as well.

SPEAKER_01 31:05

That's so interesting because also the smell and taste, I've noticed when, and it's not necessarily long COVID, but you know, when someone has a cold and then they've got the losers, they take on other behaviours, and this is just talking about my husband. He he lost his sense of smell and taste for just 24 hours, actually. But he then almost ate more and did probably put more dangerous things into his body, like really hot chilies, because he just think whether I can taste it.

SPEAKER_00 31:33

Oh no, it's absolutely, and people taking people taking real risks or you know, really spicing up the food. And for example, this spices can be really helpful uh in ways to sort of activate your you know your stomach enzymes and acids and things like to get your your digestion going by the same token. If you have too much, you're kind of you're burning the insides of your body in ways that is really unhelpful and energy intensive, it really depletes your battery when the digestion is having to work so hard so you don't have battery power for other things.

SPEAKER_01 32:09

Yeah, so true. And it comes back to your very simple phrase, is it helpful? I love it. Um, so how do you help people then regain trust in their bodies again if they, for example, have ongoing loss of their sense of smell and taste? And because those are the things that tell us that meets off, or I shouldn't have that that's quite scary because you're now left without quite a nature-based safety feature of your body. How do you help us sort of trust ourselves again or rebuild?

SPEAKER_00 32:47

I think this is a really, really important point because one thing that comes apparent as soon as I start to work with somebody is the fact that many people don't even recognize that they have a relationship with their body.

SPEAKER_02 32:58

Yeah, okay.

SPEAKER_00 33:00

So what can be really interesting to explore is like what was the relationship like before you became ill? Did you take your body for granted? Were you just even like I I had never even thought about it? It was just a thing.

SPEAKER_03 33:12

Yeah.

SPEAKER_00 33:12

Um, and I didn't treat it with respect, I mean, it was actually quite brutal negligence, if I really look at myself honestly, the way I was treating my body before I became ill. So recognizing that actually there is a relationship. What's the nature of that relationship? And then we look at actually when there's a sense that their body has betrayed us, which is often the feeling that shows up, I feel betrayed by my body. It's like, is that a helpful frame to use? Because often what I'm seeing is that this is your body frantically trying to keep you alive, yeah, yeah, trying to stop you doing other things because actually your body is in dire straits.

unknown 33:51

Yeah.

SPEAKER_00 33:53

So that kind of really looking at because trust is a very particular phrase. Yeah, yeah. And the opposite of trust is often betrayal. So it's like if you believe that your body has betrayed you, then of course there will be no trust. So looking at where you're coming from when you feel like you need to rebuild your trust in your body.

SPEAKER_01 34:13

Wow, yeah. I think that's so powerful because I know uh I I'm getting better now, but yeah, I would have said there was a point where I A, I think I probably didn't even think about my body. And if I did think about it, I would think about how much I didn't like what it looked like. And that's not a healthy relationship with it, and it it you need to change that mindset. So I think that brings me to the next question of how do we change a mindset, even if we're not struggling with long COVID or any form of other symptoms, to make it a more healing and helpful relationship.

SPEAKER_00 34:50

And I think that you know, starting with where is it at now? What is your relationship with your body? So often I talk about on a scale on the scale of zero to ten, you know, how much do you like your body? Uh, or what's the relationship like, or what's the key word if you were to put your relationship into three words, what could they be? You know, so that kind of so we start to get a sense of what's the current reality before we figure out where we want to go. Let's figure out where are we, you know, like when you're lost in the woods and you see those signs, and it's got a red dot that says you are here. We need to know where we are before we figure out where we're going. And then we think about okay, well, how would you like to feel? What would you like that relationship to be like? And then start because almost like us seedlings. And and I'm a practitioning Buddhist, so in Buddhism we have this idea of watering seeds. So it's like, which seeds do you water? If you want to water the seeds of trust, for example, if you want to water the seeds of self-love, if you want to water the seeds of uh self-compassion, okay, so we could get specific. How do we do that? And for trust, if we go with that one, often it can be about well, what can I trust? It's a bit like when I do the symptom assessment, what systems are working? And sometimes, well, well, I don't trust anything. Well, okay, well, can you trust that the sun will rise tomorrow morning? Okay, let's start there.

SPEAKER_03 36:14

Let's start there.

SPEAKER_00 36:15

Uh, can I trust that I can, you know, stand in my own body, or can I trust that I can say what I need? You know, so we start by getting specific because if we just say I want to build trust, that's a really open, vague thing. Yeah, but making it specific means that I can work my way towards that. And then when we come to can I trust myself to make good choices? So that's one of the things that I, you know, having experienced quite a few traumas in my childhood, come into adulthood with quite a few aces in my pocket. So that's adverse childhood experiences. Sense of self-trust was like zero. But I didn't know that until I realized, until I did the work and go, I don't have any trust in my choices or my ability to make good choices. So then it's like, well, I started with small choices, like what to eat, and then going into bigger choices like what jobs to take or who to be in relationships with or who to trust with my shame, because you know, I don't want to share my shame issues with just anybody because that might actually be harmful. So that kind of going from small to building it up, building that muscle of I know I can trust that I can make good choices for myself. That's very the same as like courage. You know, courage I feel is like a muscle. Uh, I need to start with small courage, you know, you know, and then I can build up to braver and braver, more courageous choices because I got this kind of resilience and agility, and I feel nimble and dynamic. I'm like, absolutely. Today I can feel really, you know, uh sort of solid in saying I am courageous because I know I am, I've got I've I've built up, like going to the gym. It's like not that I go to the gym that much, you know, but it's like I can banch press like 280 kilos, which is not true in terms of the gym, but it's totally true in terms of courage.

SPEAKER_01 37:58

Yeah, yes, yes. And it is about starting small and building up. But I'm really glad you mentioned um about can I trust myself to speak up for myself? Because that's one of the key things that I've noticed, it and it's it I have to admit, it's mainly females.

SPEAKER_03 38:14

Yeah.

SPEAKER_01 38:14

Um, whenever we talk about voice, that's the thing that they really struggle with the most. That they they just don't trust themselves to be able to advocate for for themselves. So I think it is about starting small and building up on those things. Um, and and exactly as you say, it's not about trying to change trust as a great big thing, but just one aspect of trust at a time, which is so, so important. Um, we are keeping you so, and we will be back just after another tip from the last time you're on the show.

SPEAKER_00 38:50

So I find that it's much more helpful and also more sort of pleasant for me as a human, engaging with other humans, to invite people to get curious rather than go, you've got to look at this, you know, you're looking at all wrong. Um, so much much go much rather go into it's interesting to notice that when I have like a headache, it's not just it could be because of a brain tumor, it could be because I'm thirsty, you know, so anything in between.

SPEAKER_03 39:16

Yeah.

SPEAKER_00 39:16

How do you know the difference? How do you know if you're there's the kind of inviting curiosity I find is first of all more enjoyable, but also more successful because there's no shaming, there's no judging, there's no, you know, pointing out, you know, like you, there's a whole like me, you know, somebody just said, you know, you don't really know much about your feelings. Some doctor asked me to describe how I was feeling, you know, like I was like in little pain and whatever, and they were really struck by my limited vocabulary. When they were saying, You're clearly intelligent, you're clearly well educated, but you're not able to tell me really what's going on, um, because I didn't have a language for it. So and there was a shaming in them, and I remember feeling shame because it was almost like, how can you be so stupid over here when you're so clever over there?

SPEAKER_01 40:02

You know, yeah.

SPEAKER_00 40:03

And that shame was just rushing. Um, whereas for me, that kind of I get it, so let me go with you and get curious about how you know this thing you're experiencing might possibly have to do something with that happened in your childhood. Might something, you know, have something to do with how you find it uncomfortable to be around people who are disorder.

SPEAKER_04 40:30

Welcome back to Mental Health Matters where we're having a great discussion with Thor A. Rain about uh long COVID and and other sort of hidden illnesses and pain and fatigue. It's really interesting. Um so, Thor, what would you say the ideal support system would be for somebody managing with long COVID?

SPEAKER_00 40:51

So, before we go into the ideal system, I think part of that is kind of recognizing, like we were talking about before the break, that kind of being able to speak up, having the language to name your experiences. So, support system can also be knowledge. Yeah, yeah, you know, and knowing how to describe symptoms and also knowing things like obviously here in the UK, we are becoming more aware of the gender health gap, uh, where it's really well uh is becoming more and better researched that, for example, women struggle to advocate for themselves in medical situations. Also, we know with long COVID that women are more likely to develop long COVID than other genders, uh, and so advocating for themselves and negotiating their needs with medical professionals is part of what then creates that ideal support system. And if you haven't got that sense of confidence or the literacy, the language and the vocabulary to describe what's going on with your health, then a support system would include somebody who can help you become more skilled at advocating for yourself. Uh so like going, somebody coming with you to medical appointments or making notes before and after, you know, uh that kind of that knowing that this is part of how we care for our health needs, and that um we are not there to keep doctors in jobs. You know, we we show up for medical appointments because we want to. This is my belief system, by the way. We want their help in kind of co-caring, co-supporting, co-creating the support system for us to recover or improve, because not everybody fully recovers, um, but certainly improve and strengthen the health that you do have. So that kind of recognizing that, and then we see this all the time with like menopausal or paramousal symptoms, or or that kind of still, there's kind of myth of women hysteria, or you know, you're just exaggerating, you're hypochondriac, or people of other genders, like men who develop long COVID, that they're like, Oh, this is a women's condition and therefore it's not taken seriously. So men are being disadvantaged because of the gender stereotype of certain health conditions, like long COVID. So if you know you've got a condition where there are these cultural beliefs around it, going into the situation situation awesome, not gonna go like, oh, woe is me, I'm not gonna get any help because I'm a woman, but actually, ah, this is the context, so therefore I need to advocate for myself with that in mind.

SPEAKER_01 43:23

That's so helpful.

SPEAKER_04 43:25

Yeah, and really important. And just personally, when I was going to see a long COVID uh clinic when I was attending, the brain fog was terrible. So I'd go, I'd have the thing, and I'd go home, and my husband would say, What did they say? and I couldn't remember. So, really, I should have taken him with me or somebody. Um, it's really important. And then they would have talked to him. Well, probably probably so that's another aspect, yeah.

SPEAKER_00 43:50

But that kind of how do I take how do I take in health information? How do I share information with my loved ones? Yeah, and also that kind of sense of what information do I want to keep private? We don't Owe anybody our medical information that includes our husbands and our children and parents. But also that sense of uh, like, for example, you can ask to have to record your medical appointment. Some doctors will say yes, you know, like a voice note on your phone.

SPEAKER_02 44:17

That would have been helpful.

SPEAKER_00 44:18

Yeah, yeah. A very simple hack. Yeah. Or you can take a notebook with your list your questions and say, just give me time to write down the key points here. So brain fork is such an important um uh symptom because it can really impact your ability to engage with the care that you are getting, yeah, but also communicate that care and need to others.

SPEAKER_02 44:41

Yeah.

SPEAKER_00 44:41

And leading them back to mitochondrial function, you know, that so most cells in the or in the body have like one mitochondria. Brain has got like like 13, you know, it's like the brain battery is so much bigger than it is, for example, then the cells in your toes. Yeah, it's like recognizing that brain is one of our most energy-intensive organs. So, like any kind of anything that involves the brain, like talking or listening, you know, when you've got a condition like long COVID, that can be really impacted by your ability to produce energy.

SPEAKER_04 45:14

Yeah, yeah, just important to but to bear in mind, isn't it? And do you think as a society we're we're taking it seriously enough?

SPEAKER_00 45:22

So I think that's uh sort of a yes and no question. Yeah. I think there has been uh a real um surge in investment and research uh around postviral conditions. Uh, there's suddenly been a rise in in research going into like MECFS or fibromyalgia because long COVID came like a it has a start date.

SPEAKER_03 45:44

Yes.

SPEAKER_00 45:46

You know, it's like it you know started like in 2020, 2021. People are there's something here, people are not recovering promptly, you know. So there's been a surge and uplift across the postviral condition kind of field in terms of investment in money, research potential, interventions, long health, long COVID clinics, stuff like that. So on one level, I'd say yes, on another level, I would say no. So we are much less aware of infection risks, you know. We we all wore like masks and gloves, and we had the you know, anti-back, you know, kind of uh um gels, you know, a lot of that we've just dropped those behaviors. Uh and I would say we've kind of swung from one way to another, and actually a healthy middle ground is where it's likely to be more effective for us, but also recognizing what are your own health vulnerabilities. So if you've got underlying health conditions, if you're in, if you work in you know, education, if you work in healthcare, if you work in a supermarket, if you work in places where there's a lot of infection going around, then you may need stronger kind of protections for yourself to prevent or reduce the risk of long COVID. Or, like if you have got long COVID, you know, making choices about where you socialize or how you socialize and what you do. And then, of course, in terms of that support system, are you are the people around you supportive of that? Or do they shame you for wearing a mask? Or do they go, Oh, don't be so sensitive, don't be so difficult. It used to be so much fun when you drank lots of alcohol, now you don't drink anymore. Why not? It's like, well, it's not good for my liver or good for my health, you know. That actually that kind of support system and taking it seriously actually goes together from my perspective.

SPEAKER_01 47:33

Yes, I agreed. And this next question kind of relates to that of the how do you explain to your immediate network, even if they're not your support system, something like without going having to go through the five types of tired, this type of tired is not gonna be cured by having some sleep. You know? It's it's quite hard because then they'll just switch off anyway. They don't want a lecture about five types of tired, they just want you to go out drinking with them. How do we or do we just stop seeing them?

SPEAKER_00 48:05

Well, I think there is uh often when there is uh whether it's bereavement, you know, somebody dies, or a loss of health, uh, there can be a real shake up in our social structures. And we can, you know, we can lose a lot of relationships. And often what sort of um it, you know, it's like we have feel-good friends, yeah, you know, or good fair weather friends, I think is another phrase that we have, and we can see who really comes through for us, yeah, but also what can show up at those times are other people's limitations, yeah. So other people's maybe traumas that kind of mean that they can't come and see you in hospital or they struggle with you know, people saying they're ill or something like that, because that activates something from them. So they can't they struggle to be present with you because you're having a difficult time. And so how do we communicate that and how do we identify that for ourselves and others? And often that comes down to boundaries. How good am I at setting boundaries? How how do I even know what my boundaries are? And also with long COVID, we can because if we don't understand things like post-exertional malaise, we may not have a healthy sense of what our boundaries and baselines are, and therefore we are inconsistent in what we tell people around us. So I would say that kind of first of all, starting with what's your current reality, what do you struggle with, and then getting help, whether it's from a professional like me or somebody that you trust, in terms of how do I communicate to friends in a way that they're likely to be able to hear. It's like you know, um, and that can be an experiment. We start by saying it this way and then we do it that way. Um, and also sometimes it's easier to share this in writing than it is, you know, through speech. It might be better to share it over the phone rather than in person or the other way around, you know, really getting a sense of what method of communication feels least scary because these kind of negotiations tend to be a little bit scary, um, least scary for you, and then what might be the most helpful method for the person to hear?

SPEAKER_01 50:14

That's so helpful. Yeah. I'm gonna take it back one more step further with this last question about being more compassionate and communicating that with ourselves, because and this may be maybe there's personal experience here, or maybe there's when you have been say disconnected from your brain and body, and you need to learn a whole new set of language, really, to to talk to yourself because it's so easy to go, oh I know, I know I'm supposed to do this. You don't know, you don't know because you're not feeling it and you're not gonna do it. How do we start getting compassionate and maybe curious about ourselves?

SPEAKER_00 50:51

So I think the the first thing is to recognize actually, am I being curious?

SPEAKER_01 50:57

Yeah, yeah.

SPEAKER_00 50:58

So I always say it's more helpful to be curious than critical.

SPEAKER_01 51:00

Yes, true very curious.

SPEAKER_00 51:02

So just that kind of am I being critical of myself? Am I being curious here? Yes. And then if our habit energy is to be critical, and let's face it, you know, we live in a culture, and when I did my master's, one of the most surprising things I discovered was in the England, I think it was uh UK rather than England, sorry, uh have one of the highest inner critics in the world.

SPEAKER_01 51:24

Oh, yeah, I can believe that.

SPEAKER_00 51:26

I was surprised, you know. Um, I'd only been in the country a few years by that point, so yeah, there was a big learning curve. But I was like, ah, okay, that that explains us all. That says a lot. Oh, okay. I now can see something about this culture that I'm now living in in the ways coming from Iceland, we have a different relationship with the inner critic. So that actually it might be helpful to get somebody's else's input. If I'm more if I'm trained to be hard on myself, it's really hard to go. I'm just gonna be kind to myself. Because when I you know I remember when I was old, people were like, Oh, you just need to love yourself, be kind to yourself, and I was like, that's great advice. How?

SPEAKER_02 52:01

How yeah, yeah, yeah.

SPEAKER_00 52:03

So how do I bring into the practical realm? And to go from critical to curious, kind of like in one felt, you know, one movement is really hard. I mean to find our way, so start small and get somebody else's perspective to help us, or if that's not available, that kind of really you know classic uh sort of tool of how would I speak to somebody I love if they were in my situation? Yeah, uh, but that recognition is that well, like like I discovered that I was really kind of intellectually clever and very intellectually advanced in all these areas, but when it came to me and my body and my emotions, I was like completely illiterate. Yes, it's like one of the most embarrassing moments of my life. Oh yeah, how could I be so ignorant? Yeah, yeah, yeah. And I really was. I mean, I genuinely thought having a bag of MMs was a good dinner. Yeah, I can't emphasize in I can't emphasize enough how ignorant I was about how the body works and how I work.

SPEAKER_01 53:02

I I think that's I think that will resonate with a lot of people. And now, if people want to get in touch with you, where can we find you?

SPEAKER_00 53:11

FirstAidforfeelings.com is the best place. Uh, but if you put, you know, my you my name is fairly unique. Yes. If you put in my name, you might end up. Although when you put my name into Google, you tend to see Chris Helmsworth first and photoshop him, you know, a thore in the move. That's not that's not quite me. But yeah, so first aidforfeelings.com or search by my name for a rain. Uh, if you like something like meditation, I'm also a teacher on Insight Timer, which is uh one of the biggest in uh meditation platforms or apps in the world. So that's another way of just kind of sidling up. There are free recordings, free library, just get a sound of my voice, kind of my focus, some of those things. Uh that's another way of connecting without going to the website or coming directly into like consultations or things.

SPEAKER_01 53:55

Oh my goodness, thought I could speak all day about this because it's so interesting, and and really unpacking the complexity of what of the body and the mind and and linking the two. It's just so interesting. Um, thank you so so much for being here. And and we do hope you'll join us on the show again because there's always so much to talk about, especially when it comes to the relationship between mind and body. Thank you so much.

SPEAKER_00 54:20

Brilliant, thank you. Oh, and just to note that on the website there is actually a blog about the five types of diet. Okay, which people are curious about that. I've just realized, but also about pain. So just go to the website, put in the search at the top right hand corner, like uh fatigue or pain, and you'll get all those blogs. So there's a direct kind of help there.

SPEAKER_01 54:39

Amazing, thank you.

SPEAKER_00 54:41

Thank you so much for having me. It's been a real delight.

SPEAKER_01 54:43

Thank you. We will head over to Test the Trend. So, this week on Test the Trend, this is a very old exercise that loads of coaches, therapists, everyone uses. It's a way of describing our energy battery. And I really like it because it's a nice visual way of doing it. Um, I have to admit, I don't use this one. I prefer to just talk about it as a phone battery. Do I need to be recharged or don't I? But it is called the five spoons. The idea is you've got five spoons, very visual, and each of those spoons has a certain amount of energy. And it might just simply be that you look at the tasks you have to do in the day, how many spoons does that task take? So maybe if it's dealing with a difficult client, that might actually take three spoons already.

SPEAKER_04 55:38

Okay.

SPEAKER_01 55:38

Leaves you with two left. So now how do you spend that energy? If you then look at your your calendar and you've now got to do something else you also don't like, and that takes three spoons. You're you're minus spoons. Exactly. So I think it's just it's a nice way of being able to visualize how much energy we've got and be able to assign the things we have to do a certain energy rating. Okay. And so that's my challenge to you this week is to think about how many spoons you have, how full those spoons can be, and to assign them to the task that you do. And then maybe if you find out you're running out of spoons a lot, it's time to reshift some of that timetable. Oh my goodness! What a great conversation that we don't have enough.

SPEAKER_04 56:32

No, it was it was it was really good to kind of get that out in the open and to just to talk about it as it as it is.

SPEAKER_01 56:40

And the complexity of all of the social, the environmental, all of those other things that are going on our own identity that can affect not just illness or how illness presents, but how we recover from it. So much to talk about.

SPEAKER_04 56:54

Yeah, absolutely. And the thing that struck me was when Thor mentioned shame. Yeah, because the the first time I ever got COVID was in March 2020. My friends didn't believe it, and then they all ignored me for about a year. So that was very shameful. I don't know, you know, it wasn't my fault, but it it so they didn't want to know that I had long COVID for sure, because they didn't want to know that I had COVID in the first place. It was very odd. It's really odd. So I'd forgotten about that side of things as well. So that was really important, I think, that Thor mentioned that. And you know, now I I think, well, that's their issue, not mine, but at the time when you're kind of in it, it it's it's horrible.

SPEAKER_01 57:40

And this is the same sort of thing. I have a friend who is still trying to explain to members of their family that long COVID has triggered another response which has affected their immune system, which means they can't actually go to so many social gatherings and as much as they used to be because and the family is all oh, but you you're not coming to see us. Oh you're not coming, you're missing Christmas again. It's it's not like they're happy missing Christmas.

SPEAKER_04 58:05

No, it's not a choice, it it it's very, very difficult, and so it's that's why um it's so important to think about the wider group and the your wider world. It's not just you with the condition, it it affects everybody else, and it's not helpful when people don't understand.

SPEAKER_01 58:26

Because the exhaustion that you then feel trying to explain that to people takes away from the need to heal. That could take three spoons already, you know, and it's it's very hard. So, yeah, I think what really struck me like so it's it's that whole complexity. I like the the physical side of it as well, to be able to understand that and how people's physical bodies will react in different ways too. So there's a lot to think about. Please do look up First Aid for Feelings. The blog is wonderful. Thor's blog is really, really wonderful, and there's loads of free stuff on there as well. So lots of stuff if you are waiting to get support, if you are looking for a little bit of extra support, First Aid for Feelings is a brilliant blog from all of us here at Mental Health Matters. Have a healthy week.