Staying connected (Part 1): Dealing with isolation and limitations in complex illness

Emily Kate Stephens (0:07): Welcome back. We have brought you some very in-depth science episodes, and this week we are balancing that with a more holistic conversation, focusing on some of the small changes that people could potentially make to improve health in complex conditions and maybe begin to feel better. I have the pleasure of bringing you my conversation with Suzy Bolt. Now I'm conscious that many of our audience might have limited energy, so I've split this one continuous conversation across two parts, so it continues in episode 10. When Suzy developed Long Covid in 2020, she had an inkling that it was related to her autonomic nervous system. Searching for answers and finding many others suffering in isolation, she drew on her experience as an NLP practitioner, counsellor, and yoga teacher to bring people together and create an online community, which developed into rehabilitation programmes for those suffering from post-viral illness and chronic fatigue. Her two programmes have enabled over 5000 people to make incremental gains in their health. One of the wonderful things about Suzy's programmes is that she understands the extent of debilitation in people suffering from these energy limiting conditions, and chooses to meet them where they are, providing help from the comfort of their bedroom, creating an online community with a focus on supporting each other in a way that's encouraging and uplifting. In the first half of this conversation, we discussed the methods Suzy uses to help people with their illness, the impact of isolation in these conditions, and the need for connection and community. We discuss exercise and hear Suzy's journey, and how our histories and genetic makeup contribute to these conditions. As ever, we are really keen to hear your thoughts on the ideas put forward in this conversation. Let's take it back to where you started. I won't go right back to in utero, but where you started coming out of working in the performance arts and taking a direction to train was the first thing that you did train in neuro linguistic programming. Was that your first route into therapy?

Suzy Bolt (3:17): So I trained as a yoga teacher first, and then went into the world of NLP. Yeah, basically because I, at the age of 25, I think my own nervous system regulation stuff was so apparently out of whack in comparison to my friends. I kind of went, "How are you all just getting on with life and managing? And I'm over here slightly going a bit crazy and was referred to a friend who was an NLP master practitioner and it changed my life 100% changed my life and I went I'm going to learn how to do that so I then began a kind of slow... I learned over about eight years the different levels and went through very immersive practical hands on learning experiences and loved it, loved it, and used it a lot in the work that I did alongside my yoga teaching, but with my yoga teaching as well. Actually, in the language that you use around people every day, you know.

Emily Kate Stephens (4:12): So, for those in our audience who don't know or have not had experience of NLP, can you give us a little framework of the way in which it is used, because I believe it's focused around language and communication.

Suzy Bolt (4:29): Yeah.

Emily Kate Stephens (4:29): But what I find particularly interesting in your work, and I don't know if it's across the whole NLP space, is it's not just external language and communication. It's also very much a self-reflective practice.

Suzy Bolt (4:45): So NLP, for those listening that you may have heard about it, but you're not quite sure what it is. NLP is neuro-linguistic programming. So it looks at the patterns that we have and we formed over our life, the patterns of thought, the language that we will use to share those thoughts and process our experiences of the world, and hence the programming piece. So all of the thoughts that we have and the things that we say, they're all a result of a kind of programming that we learn. And actually, one of the things that I really love working with people on when they come into my space with me is just allowing people to understand that's a programme that you can have some choice around. It's not just fixed. We're not fixed as people. There is some flex, and often when I'm working with people now, people come in and they're very much stuck in a pattern of this is how I'm thinking about my experience with my illness. This is the language I'm using to talk about my illness. This is the kind of thing that I'm identifying with. I may have a very very fixed pattern around the beliefs I have around whether or not it will change or get better. And so what I do is listen to their language and listen to their kind of responses to things, and gently begin to tease the edges of it, so that at some point, maybe after about three or four weeks, and this is particularly in the phone programme, not in the bigger programme that we run, because it's coaching based and we get to talk. There's a point where people go, "Wow, I've just totally had a paradigm shift on how I think or feel about this, and it feels completely different in my body. And that moment, I go, ah, great! Now we've got a kind of chemical change going on inside you because your belief system has suddenly been nudged, perhaps into a slightly more positive place, which I think is an incredibly powerful thing to help people find for themselves. We have all the resources within us, but sometimes we just have packed some of them away because they don't fit the place that we're in right now. Like it's not okay for me to think or feel that because of where I am right now. And actually, we'd like to explore, what would it be like if we could find access to that feeling again?

Emily Kate Stephens (7:07): And I think that in itself is interesting the way that you explain it because it's not about suppression of how you're feeling or telling yourself in a negative way.

Suzy Bolt (7:19): Yeah, no, there's no wrong thoughts. All of the thoughts that we have are based on the brain's response as a brilliant mechanism of keeping us safe, and we're always making the best choice that we feel that we have in any given moment. So everything is good, and sometimes we can get into a place with our thinking where we begin to limit change as being a possibility, and I think that especially when we're living with chronic illness, if we limit our possibilities, that means nothing is possible. And I think that's a really stuck and dangerous place for people to end up because, especially for their mental health, if we don't think anything is possible, and it's never going to be possible, and that's it, it's a full stop. There's a brick wall that's built, and then someone's life becomes really, really small. And when it becomes really small, we're disconnected, we're isolated, and all of the other stuff that goes on in the chemical makeup of our body begins to go on that downward spiral towards really deep, dark abyss, ill health, mind-body stuff.

Emily Kate Stephens (8:28): You have this experience as an NLP practitioner, a yoga teacher. You're also a trained counsellor, and in early 2020, you yourself got Long Covid.

Suzy Bolt (8:45): Yeah,

Emily Kate Stephens (8:45): And for those people that maybe haven't followed you over the last five years, would you share briefly the story of that?

Suzy Bolt (8:55): Yeah. So, I'll just backtrack briefly to help people understand what I've learned about why that happened to me. So I was doing a performing arts degree in London, moved there when I was 18, and I got into doing yoga then. Yeah, and actually, one of the things that I noticed very quickly was, oh my goodness, this is the first thing in my life that's actually made me feel calm and focused. I've since had, at the age of 49, a couple of years ago, an ADHD diagnosis, and it was like, oh, so that's why it was so profound for me, and profound enough to make me go on to learn how to be a teacher quite quickly afterwards.

Emily Kate Stephens (9:35): There are so many things for us to cover. I think that ADHD diagnosis is also a very very interesting point. We are going to talk about so many contentious things, aren't we?

Suzy Bolt (9:47): I don't know if they're contentious. I think we're all on board with it now. Anyone that needs to be,

Emily Kate Stephens (9:51): Do you think?

Suzy Bolt (9:52): Yeah, I do. If we were to kind of dig into that neuro spiciness,

Emily Kate Stephens (9:58): Yeah,

Suzy Bolt (9:59): One of the things that I've really, really seen in the five years that I've been tinkering around in this world is the amount of people that have some degree of either ADHD, whether it's diagnosed or undiagnosed, or autistic spectrum disorder, again diagnosed or undiagnosed, but hugely relating to, and I think we then start to track into the okay. Well, do you have any slight joint hypermobility? And it doesn't have to be everywhere; it could just be in a few joints. Okay, well, that's a part of the puzzle too. And have you had more than your fair share of illness in your life? Okay, well, you start to put a pattern together. I ran a workshop on this with a bunch of doctors who specialised in this whole kind of spectrum disorder, and the propensity for POTS and autoimmune conditions and pro inflammatory responses to viruses. It all sits within that or under that umbrella, and it was such a light bulb moment for me and for many others that were in that workshop at the time. It went. Oh my gosh! These things are all connected. Yeah. No, great. This is now making sense.

Emily Kate Stephens (11:10): It's fascinating, isn't it? Yeah. And it really really makes you consider the root of these various things and where there is something different, if it's in your brain or if it is in your immune system, I have interviewed someone previously who has written numerous scientific papers on the crossover between mast cell activation and particularly mast cell activation in pregnant mothers and autism in children. Oh, there are huge crossovers, and so many of the people that I speak to about, I've done recently two interviews about the impact of something like Long Covid on the prefrontal cortex, and that is exactly the same area of the brain that is different in some of these spectrum or neurodivergent conditions.

Suzy Bolt (12:12): Yeah, and if we go to the likes of Gabor Maté and one of his things around ADHD, because as a doctor he himself has got ADHD. All of his stuff is linking it back to the stress, perhaps undiagnosed, perhaps diagnosed in utero for many. The nervous system disruption. If you're the child of a parent who is really struggling with overwhelm, really struggling with perhaps a stressful period, when you're inside still and you're being slightly more bathed in cortisol than another child, the chances of you becoming more prone to having some kind of ADHD, some kind of nervous system disruption just elevates for you. Yeah, my own story is yeah, my mother was very very stressed when I was inside and growing, and it's kind of taken me a long time to go. Oh, there's a connection there, and that's okay. I'm fine with it, and I like who I am, and it's great. But that makes sense.

Emily Kate Stephens (13:13): Yeah, a lot of it is that acceptance of it, isn't it? And it's not apportioning blame on anyone, your mother or yourself, for how you are, but just embracing the all embracing our weirdness.

Suzy Bolt (13:26): Right, that's the story. That's how it is. And actually, chances are, the stress started generations ago. You can't find a starting point for stress for most people. It's a generational thing where there may be certain dynamics, and this is how you're taught to respond to difficult situations because that's how your parents responded, and that's because that's how their parents responded, and so you go forth. So for me, it was about identifying. I don't want to pass on those stresses to my children where possible. So I try to be. I work to be much more relaxed and calm around my children, and I think one of mine. I had a more stressful pregnancy with my second child, and I think I noticed that he's more like me than my first. It is what it is, but I bring awareness to it now, perhaps more than I would have done had I not had my own diagnosis. So

Emily Kate Stephens (14:18): Yeah, so early 2020.

Suzy Bolt (14:22): So, not only did I have an undiagnosed ADHD nervous system, which made me more at risk of getting ill a lot when I was a kid, which I did. I then got glandular fever at 18, which I think is quite a common piece of many people's puzzles. So, the Epstein-Barr virus, and was someone who was phenomenally determined to ignore it. I got very very ill at the time, bed bound, eight weeks dark room, don't even put music on, kind of stuff. Lost loads of weight, all my hair fell out, kind of thing. But then, and that was during my A levels. But I was in university in September doing my performing arts degree because I was on a mission to leave.

Emily Kate Stephens (15:01): So you did that pushing through,

Suzy Bolt (15:02): Push through, and that was basically how I lived my life. I've just gone. I know that I will boom and bust. That's what happens. So I've always been self-employed. I've always worked for myself. I've worked absolutely 150% at the projects that I get involved in, and then fall apart for a bit. But I kind of almost was factoring that in. I was like, "This is how I do my life. I'm okay with that.

Emily Kate Stephens (15:24): But when that's your reality,

Suzy Bolt (15:26): That's my reality.

Emily Kate Stephens (15:28): That feels normal.

Suzy Bolt (15:29): It's normal, right? And you know, yes, I became a mother, got married, had kids, all of those things, and everyone was just like, "Yeah, you just get sick a lot, don't you? And I'm like, "Yeah, that's just who I am. It's okay. 2020. 2020. This virus appears on the horizon, and I know straight away if this virus meets me, I'm telling myself (I use that word, so NLP here, right?), I'm almost giving the command to my body: if you get this virus, you'll get ill, like properly ill. And sure enough, a week after lockdown began, I sat on the bed and went, "Oh God, I really don't feel very well. I've got the weirdest feelings going on in my body. I feel like there's something like an icy monster travelling around my system. And I started to get kind of food poisoning symptoms. And mine wasn't a cough. It wasn't shortness of breath. It went for the gut first, and I went. Well, I'm breathing, and I'm not coughing, so I'm just going to keep working because actually all of my work's just been flipped on its head. I've set up an online community. I'm going to keep going because I've got no income stream, and I'm actually having quite a lot of fun. This is great. I've got people from around the world in my online classes, and this is lovely. I can't not show up now, so I ignored it. And every now and again, it would kind of really cripple me, and I'd have to get someone else to cover a class. And I kind of pushed through for about six or seven weeks, and then my body went right. I was probably on my hands and knees, like as I headed towards the seventh week, and then I hit the wall so badly. I was so unwell. Proper shut down. Back in the dark room. Noise sensitivity, light sensitivity, a stammer, bleeding joints, hair loss, lung pain, heart irregularities, gut issues, skin issues. It went everything. Everything that you could do, my body did it as a kind of. You are not going to do this to us anymore, Suzy Bolt.

Emily Kate Stephens (17:30): Yeah, and really saying to you, please listen to me. I've been trying to tell you

Suzy Bolt (17:35): Exactly. You can't have fun now because you're sick. Okay, so put your ADHD, hyperfocus, joy focusing, dopamine seeking stuff out of the way, and we're gonna shut you down. And it did. I properly listened to the point where my doctor at some point sent an ambulance to the house and went go to A&E because this whatever's going on for you. They didn't know anything then. Really, they were just kind of scratching around.

Emily Kate Stephens (18:03): Yeah, but it was that extreme.

Suzy Bolt (18:05): Yeah, it was extreme. It was extreme. There was hushed conversations in the living room in my house with my husband at the time, and a doctor, his cousin is a doctor, and they were kind of you know, what we're going to do about Suzy. And in the meantime, what I'm doing is lying in my darkened room with my Facebook app open on my phone, connecting with people, going, "There's other people like me.

Emily Kate Stephens (18:30): Creating a community,

Suzy Bolt (18:32): And I need to not be tapping into the grief of the world here because this is majorly upsetting. I need to focus on something nice, so I set up my own little Facebook group and kind of went, "Hey, if anyone wants to join me over here, I'm going to be looking at things that we can do to make ourselves feel better. And that was the beginning of the community. It was born out of my own absolute dire need to meet with other people in the space where I could normalise what I was going through. Anyone else got this? Anyone else got this? Okay, great. So this is normal. It's not just me. I like that. That makes me feel reassured. I've come out of the hospital. My tests for the big scary stuff were all fine, as with many. Yeah. Which actually I was reassured by. I know. I know many people are really scared by that because then they come away going, well, what the heck does what is going on? I think I had a sense of understanding this is probably my autonomic nervous system going absolutely haywire, so I need to have fun. I need to take my focus off my symptoms and how terrifying they are, and go, hey, why don't we meet online and have a chat. And who's taking antihistamines? And should we do a relaxation together? And let's just hang out. How about we do a fancy dress gathering? Where, but doesn't matter how ill you are, just put a funny hat on and let's just show up and have a chat. And literally, that was how it grew, because I didn't want to get together and focus on how ill we were, I wanted to acknowledge it. I wanted to normalise it. I wanted to talk about it, and then I wanted to say, "Do you know what? What we need is to laugh. What we need is to feel understood, listened to, acknowledged, validated. We need love, empathy, support, and joy.

Emily Kate Stephens (20:18): And I think that's a really interesting point that you make there, because I think so many people with this and with other chronic illnesses, the big word that came out then from you was fun, and I think so many people lost all fun, all joy from their lives during that period. They were in a hole by themselves, not knowing what was normal.

Suzy Bolt (20:47): Yeah,

Emily Kate Stephens (20:48): And I think one of the big things, and not just with Covid, but with these kind of chronic illnesses, is the isolation.

Suzy Bolt (20:57): Oh, it's deadly. Yeah,

Emily Kate Stephens (20:59): And it's incredibly difficult for people to see outside of that or get outside of that. Yeah. Now I will get pushback on this conversation because people will say to me, "You don't understand what it. I mean, I've had Long Covid for five years, but people will say to me, "You don't understand what it's like when you are bed bound, when you can't get out of the room, and that is definitely a challenge. But I think one of the things that you have tried to do with your programmes is bring back in that sense of community, and whilst we are not suggesting that you push forward through post-exertional malaise and make yourself worse,

Suzy Bolt (21:51): Nope,

Emily Kate Stephens (21:52): You're talking about taking small increments of things. Be that movement, be that socialisation, be that changing your mindset slightly to find some positivity, some gratitude, something to remove that real black hole.

Suzy Bolt (22:14): Yes, I think the worst thing for anyone is to believe that staying in that room isolated by themselves is the only choice that they have. Now, I'm not saying you need to get out of bed. I'm not saying you need to do anything different. But I think if you can access community from your bed, and we get many, many, many people who join us from their dark room bed, okay, and that's a really, really important piece for anyone who's listening. If you're a healthcare practitioner, there is something out there for everyone, and we get a lot of people who join us. And I say, listen, I want you to know first of all that you're part of something. Now we are your community. We're here for you. You can reach out to us at any time, ask questions. You can just log in and listen to us like radio. I want you to know that we're here to keep you company, and everyone in this community understands what you're going through and has been in that dark room bed for some time, whether it was a short period of time or whether it was a year and a half. I've got people who are still with us in our community who started when we first began the programme, and I see this incredible incremental, slow snail's pace progression. So it might be for the first year there was someone that I just kind of acknowledged at the end of last year, actually, as our kind of student of the year. She spent the first year in bed, and she would only ever log in from bed, and it was always quite dark, and she was struggling to speak. And then the next year, she was a little bit more vocal, and then the year after that, she was sitting up and managed to potter around and actually get into her living room. The progress for some people is so slow, but because we were there seeing it, and she would log in two, three times a week. Well, that was into classes that I ran, probably other classes as well. She had daily contact with her community, and we kind of kept her company. And so she would come in with difficulties. We have these kind of after class chats where we rely on the hive mind of the community, and she would come in and talk about various things that were troubling her. There's always some incredible wisdom in the community, and she'd go off and try things, even if it was just about I'm having difficulty getting a wheelchair that has got the leg up bit so that I can keep my feet raised because my POTS are so bad. All of those things, you've got an incredible group of people who can kind of go, hey, well, actually, this is what I tried, or have a look for this, or do some research on.

Emily Kate Stephens (24:48): That's a remarkable thing in itself, isn't it? People love sharing their knowledge, their experience, and helping other people with it.

Suzy Bolt (24:56): Yes,

Emily Kate Stephens (24:57): And it's but only by bringing people into the communities where you are dealing with other people with the lived experience,

Suzy Bolt (25:04): Lived experience is king.

Emily Kate Stephens (25:05): Yeah,

Suzy Bolt (25:06): 100% She's one of many, many students that I can see because she's been with us for such a long time. I see the progress, and it's been very, very slow. And lots of people, the progress isn't that slow. But for her, yes. And seeing her now, she managed actually towards the end of last year to get out of her flat for the first time and go for a coffee on her high street, which was so moving. It made me cry. We had a whole kind of like community cheer.

Emily Kate Stephens (25:34): Oh, you're making me cry just describing it.

Suzy Bolt (25:37): It's so powerful, and then other people see that, and they're sharing that joy. And people are going, "Well, maybe I don't need to believe that leaving my house again is impossible, because if she can do it has taken her a long time. But if she can do it, then maybe I can too. And I think the power of community, the power of doing some of the most difficult things in your life with other people cannot be underestimated because we're social creatures and we need that support, guidance, encouragement, inspiration. We need it. We literally chemically need it in our biology to help us through these things.

Emily Kate Stephens (26:13): And you actually started creating the programme that has become the Rest, Repair, Recover programme in September 2020. Am I right in thinking? Which is actually comparatively early on. If we look at any other provisions that were even put into, I did not even get a GP appointment until 11 or 12 months into my illness.

Suzy Bolt (26:39): Yeah,

Emily Kate Stephens (26:40): And even then, they didn't believe that it was something that was left over from Covid.

Suzy Bolt (26:47): Yeah,

Emily Kate Stephens (26:48): It took me until I was 13 months in to actually get someone saying, "Yeah, this is a consequence of Covid. So to have that facility for people, some of whom must have been joining you almost at the beginning of the illness, the people who had it right at the beginning.

Suzy Bolt (27:06): Well, there was a lot of us who had been February, March, April infections in 2020, January, February, March, April, and I'd done the kind of first round of getting more and more unwell, very unsupported, gone in, had the test, hospital, go away now. Thank you very much. There's nothing we can do. It's probably some kind of post-viral. You'll probably get through it. And I went autonomic nervous system, and they were like, yeah. And for me, that was enough. But also intuitively, we were all still doing lockdown and stuff. Then I just went. I need to do this with other people. I need to talk about this. I need to relax with other people because my nervous system is so wired. I'm not going to relax on my own. I can't. My brain wants to do anxiety. I'm going to arrest that thought by connecting me with other people. So I created the groups for me as much as for the other people that I was beginning to have contact with, and I just went. You know what? Why don't we just gather and have a bit of fun two times a week? And there was about 20 of us at the very beginning, about 20 people, and I'm still in touch with nearly all of them. Oh, many of them have gone on to get fantastically better, but people still check in, and yeah, we kind of grew it from there. And as I went through my own journey and my experience, so we added to what was being offered, and I realised we need everything because there is just nothing out there for people who can't leave their homes, and that was the key. But it's all well and good saying, "Whoa, well, we've got this really great support group at the hospital for people with Long Covid. I'm like, "No, no, no, they don't get there, because even if they've got the energy to get dressed, by the time they've got dressed and put their shoes on, they're done, and you're going to make them ill. So let's not ask them. Let's not even think about asking them to come in and see you-it's madness. You don't understand this illness, so I went. I'm just going to see if I can provide as much as possible for people who are in their beds, because that's actually where we need to be finding people at that point when they're really stuck. Now, obviously, people are in their beds, and people that they may live with, may be going out to work every day or school, they're on their own and they're stuck in the house. And going out makes them feel really poorly, and so we need to meet them there.

Emily Kate Stephens (29:30): Now, the community that you have ended up creating in your Rest, Repair, Recover programme is broader than simply Long Covid. You've encompassed other post-viral conditions. You're dealing with people who have ME/CFS. You're looking at fibromyalgia. You have said that you are wanting to address the autonomic nervous system. Now, by that, you are not suggesting that these people, in any way, do not have a post-viral consequence. You are not suggesting this is something that they have manufactured in their minds, and that Is a big Clarification that needs making because I think a lot of people, when someone like you says we need to address autonomic dysfunction, they say this is not my fault. I didn't do this to myself. So why are you telling me that by doing some breathing, doing some yoga, and people saying stop telling me to just go and do yoga.

Suzy Bolt (30:41): I totally get it. Absolutely right. Totally get it. So one of the things that actually my community really value is that I have a lived experience of this, and my own health is a constant battle to me too. Especially because I'm now 52 years old, I'm throwing the menopause piece into the mix, so who knows how I'm going to feel when I wake up day to day? Some days I'm like I can't get out of bed today. Some days I can. I've had a succession of colds and horrible virus of reactivation of EBV before Christmas. I'm constantly dealing with my health. It's not in my head. I'm not making this happen to me, but this is what I know. I know that I can help myself come out of the pit if I don't do anxiety around it. If I'm not afraid of my symptoms, and that takes work. Obviously, that's a piece that has to be worked on, and that I come into work with my own nervous system that gets into that sympathetic overdrive, that heightened state where everything is beginning to fire off, and the brain is going a little bit ah, and I can help myself come out of the pit quicker by activating my parasympathetic. So the part of my body that does the healing work, it won't switch on if we just talk about it as a switch, it won't switch on. If I'm really stressed and feeling very, very in the pit of despair and very activated, it won't switch on, and so I stay stuck there. And and if I stay stuck there, I'll generate more symptoms. I'll feel more and more unwell.

Emily Kate Stephens (32:15): Yeah, because there is that spiral or the feedback loop.

Suzy Bolt (32:19): Exactly.

Emily Kate Stephens (32:19): Because we can't underestimate how much that nervous system impacts our physiology.

Suzy Bolt (32:26): Absolutely, and this, I'm hoping that people really understand. If we just look at that piece, there's a part of my biology which is activated and controlled by the vagus nerve, and I'm hoping that everyone understands the importance of looking after your vagus nerve, getting it toned, bringing it back to

Emily Kate Stephens (32:45): So interesting because I don't think it was even part of the public or medical conversation broadly prior to Long Covid.

Suzy Bolt (32:52): No, exactly, no. And actually, I had quite a lot of doctor friends who I said I think this is dysautonomia, and they said, "What's that? I went, "Oh wow, okay, we've got work To do. And it wasn't until I met Boon Lim, who I know you talked to, actually he found out about me, and he went, "Oh my goodness, you're doing the work that people need to do. And he's a specialist in guess what? Dysautonomia. So, if you get to consultant cardiology level, they'll hopefully know about dysautonomia, but it doesn't cascade down into your general practice level. So, I would like to think that language was bandied around a bit more now in your GP practice, but it might not be. It's the same with MCAS. But understanding that we do have a little bit of sway over activating or assisting, or even just thinking about creating an environment in the body where the body can begin to help itself a bit. I'm not saying you're going to recover, but I'm saying you're going to help yourself.

Emily Kate Stephens (33:54): It's creating optimum conditions within the body to start healing.

Suzy Bolt (34:00): That's it,

Emily Kate Stephens (34:01): And that's not saying that you don't have whatever is driving this, and or there are still people who say, "Oh, but maybe you just got used to being in bed and not taking your kids to school. That you just

Suzy Bolt (34:18): No, no, I think because of obviously many decades of mistreatment of people with chronic illness, there is a massive pushback on this kind of suggestion, and I think there's a lot of people who will have suggested some of the things that I talk about and offer, but in a way that is almost insulting. I never say to someone, "Oh, you should just start doing yoga, and it will make a difference. Despite being a yoga teacher and despite offering it on my platform, because actually the average yoga class will make someone incredibly unwell. So I think there's lots of bits of yoga that I talk about, and one of the most important bits is the concept of community. Actually, the concept of creating a sangha-that's the practice of yoga. You have a group of people who are working together to share their lived experience and inspire and uplift each other. That's yoga.

Emily Kate Stephens (35:12): I do not think you can underestimate the power of the community of being in class.

Suzy Bolt (35:21): Yeah,

Emily Kate Stephens (35:22): Or you see it as well with people who have joined choirs,

Suzy Bolt (35:26): Yes. But the breathing as a group.

Emily Kate Stephens (35:27): Yeah, it has immense power, and I don't know technically whether that is to do with our nervous systems feeding off each other, just the way that you feel when you're with other people. But there's something rhythmic about it. Now you use multiple of these practices in the Rest, Repair, Recover The Programme, if we can just go into the detail of it a little. Its sort of focus is recovery and regulation of the nervous system, and you do that via breath work, meditation, mindfulness, yoga nidra, which I think literally saved my life.

Suzy Bolt (36:14): Yes, 100%

Emily Kate Stephens (36:16): Chanting, but there's one really interesting one in there that I think would be something worth you explaining, and that is you offer a cardio HIIT and weights class to people who there are two things that they have been generally told. They've been told avoid exercise. It's going to push you into post-exertional malaise. Don't do it. Don't raise your heart rate. Don't do cardio. Or, if like me, you were sent to an NHS exercise specialist, you are told in a room by someone who has no knowledge of chronic illness.

Suzy Bolt (37:04): So

Emily Kate Stephens (37:04): You just need to start lifting weights and incrementally increase the amount of weight you're lifting. Then you'd stop being deconditioned. Yeah,

Suzy Bolt (37:12): Which is utterly devastating. We've had so many people who've come through introducing people back into the gym and going really slowly and all of that. For some people, I've absolutely 100% seen that's helped them. For others, they've been like, "Oh my goodness, this is way too much. Caused me to crash. This is ridiculous. Way too far. And I think it will really depend on the leader of the programme in your particular area. And we encourage people to listen to their gut if they've got a place and they want to try it. It's like if you find you're being asked to do more than you want to do, that is a red flag, and you really need to pay attention to it. We offer a spectrum of classes, and this is really really important. We ask people to come in at level zero and level one. So level zero is you just come in and watch. Okay, now any of the classes that involve anything that look remotely like rebuilding strength, they're for like level three, level four plus. So we have levels which allow people like me. Can I just say? So you know, I started the new year beginning to have a little bit more energy again after all of the illness that I had October, November, December, and I went. Okay, I want to do a little bit more now. I want to do a little bit of weights. I don't want to add in cardio. So we have a class that is just a little bit of weights and a little bit of stretchy, and so it allows people to find a class for those who are ready finally to do a little bit with all of the right verbal cueing of listen to your body, put it down. Maybe you're just going to do one of these today. Maybe you're not going to lift any weight at all. We're really good at doing what's called trauma-informed language teaching, so never asking people to push through, do more reps, feel the burn. It's only for people who are way down the line of recovery that want to find that safe space to begin to do a little bit, without having to go back to general exercise or a gym.

Emily Kate Stephens (39:05): But one of the very interesting things about your programme, both of your programmes, I believe, is that the majority of people that are involved have extensive experience of chronic illness, and multiple of them have their own personal lived experience,

Suzy Bolt (39:22): Really important.

Emily Kate Stephens (39:23): Either themselves or looking after someone with it, yeah, and I guess that informs if you've either lived it yourself or seen the next day of someone who has been pushed too far into PEM because if you go to a normal gym, maybe you see a trainer or you do a class. There's no follow up the next day, so that person doesn't know how that class has landed with you.

Suzy Bolt (39:54): Yeah, yeah, yeah, yeah. And also, it's almost impossible, I think, to comprehend the delicacy and the kind of minimal amount of effort that one needs to teach in a class for a body that has been and lives with chronic conditions. So if you didn't have a teacher that fully understood that, there's just no way that they're going to be able to comprehend what you mean. Just lifting the hips once is that it is that going to be enough for someone? It's like, yep, 100% One lift, that's plenty, and then maybe two, three minutes rest. It's like no teacher that hasn't lived the experience will understand that, and the necessity of that being something that is constantly reminded about, constantly encouraged to rest, constantly you know do less. In my programme, all of it is less is more, and I constantly remind people in the classes that I teach. If there's a part of your brain that is going, oh, I might just do a little bit more because the exercise will be good for me, I say I want you to get that piece of your brain and kick it out because that's part of the problem. Actually, I want you to come in and celebrate languishing here with me and just having a bit of fun. Okay, because for some of you, just logging in is going to be stimulation enough. You don't need to add movement here.

Emily Kate Stephens (41:17): But that's interesting in itself. Going back to the language element of it-that you're also not just saying to people, change your belief system and make yourself do more.

Suzy Bolt (41:32): No,

Emily Kate Stephens (41:33): Because

Suzy Bolt (41:34): No,

Emily Kate Stephens (41:35): It's far more nuanced than that. It's not saying, "Come on, you can get, you can do it, you can get on with it. You can lift it one stage higher.

Suzy Bolt (41:45): Yeah. No. And actually, I really, really focus on. There's a part of your brain that will have been so conditioned by society to push through, to do more, to try your best, to move until you're tired, and I say that is the piece that we need to unpick, because this, for some of us, certainly for me, is part of the problem.

Emily Kate Stephens (42:07): Do you see that quite regularly through in terms of the demographic of the people that come to your programme? Is it people who have always pushed?

Suzy Bolt (42:19): Yes, and you know, on one hand, you've got those for whom their main driver. So I do a lot of work in the firm programme on personality drivers, that transactional analysis piece. What pushes you? So I have a very, very big hurry up driver that wants me to just get everything done really quickly, and I'm just going to go here, and I'll do that, and I'll take on 50 tasks in a day, which doesn't serve me in any way, shape, or form. It's a very ADHD thing. And then you've got those for whom putting others' needs before themselves. Oh, I've just got to help them with that, and I can't sit down and rest before I've done that, and I can't possibly do this because that person needs me to take care of. So there's that we're dealing with, and then we've got the be strong driver, which is oh, I don't want to be weak, so I'm just going to keep going, and I'm going to appear to be strong because I don't want to be that person that can't do something or that is seen to be lazy, which is a terrible kind of internal self-shaming mechanism that pushes people through. So you know, and that's just three. There's more.

Emily Kate Stephens (43:17): I think I've got all three of those,

Suzy Bolt (43:18): And I think we do. I mean that's the thing? There'll be a couple that we kind of inhabit a lot, you know. Obviously, I haven't even mentioned perfectionism. There's all of them at any given point in our day having a little bit of a kind of leading moment, and we do need to first of all be conscious of, oh my gosh! Look at the programming that I've grown up with, and this programming gets instilled when we're very very young. You've got a perfectionist parent who's saying to you, "Oh, well done, that's perfect. Oh, your room is perfect, or your homework is perfect. You're looking for those kind of rewards, you know.

Emily Kate Stephens (43:57): Poor children.

Suzy Bolt (43:58): I want to be perfect, and I think mine was, you know, let's do it quickly, and let's be really efficient, and let's do lots of different tasks, and you know, so I grow up with the okay, I'm really capable at doing a lot of things, even if I'm ill,

Emily Kate Stephens (44:13): Yeah,

Suzy Bolt (44:14): Even if I've got a broken limb, I will go into central London on the underground, and I will teach my classes and do X, Y, and Z because nothing's impossible. They're drivers. They're drivers, you know, and they push us off the cliff. At some point, they can take us on brilliant adventures. So actually, I love my drivers, but they can also, when you get to a certain point as well in life, where your body's just like I'm just kind of fed up with you treating me like this, it then becomes something that you need to be more conscious of and go, ah, I need to let go of some of the behaviour that comes with that driver, and I love my driver, but it's also it can be too much.

Emily Kate Stephens (45:02): Please continue listening to our conversation in episode 10, where we discuss the need for kindness, creativity, distraction from symptoms, and we delve into nutrition as well as the small wins, and talk about how Suzy Bolt's programmes encourage us to listen and enrich our mind, body, and souls. Thank you for listening to Make Visible. Please do like, follow, or subscribe to listen to our next episode, where we'll be uncovering more insights into complex chronic illness. This was brought to you by the team at Visible, a group of scientists and engineers whose lives have been affected by energy-limiting health conditions. We're building wearable technology that's helping 100,000 people measure and manage their complex chronic illness. To find out more about what we're working on and how Visible could help you, visit our website at makevisible.com.

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