#23 Improving quality of life - managing P.E.M. and moving towards stability with O.T. Amy Mooney

(gentle music) Welcome to Make Visible, the podcast Shining a Light on Complex Chronic Elness. I am your host, Emily Kate Stevens. (gentle music) Welcome back. This week I had the absolute pleasure of talking to Amy Mooney. She is an occupational therapist who works with conditions that induce post-exat�able delays to enable people to rebuild their quality of life. This episode is packed with practical tips and thought processes that really can break things down and hopefully empower patients to know that they do have a little control over their bodies and their illness. (gentle music) I actually referenced you as an OT in one of our podcasts the other day and someone wrote and said, what is an OT? So some people will not even have crossed paths with an OT or an occupational therapist but I think something that's really important to highlight is some people will have only crossed paths with them when they get brought into their office and get shown how to do a workstation setup and your role. And it's actually something that I had only become aware of when I, one of my children is autistic and we received OT help in helping him at school and that's the first time that I became aware of occupational therapy for different conditions, the way in which you can use your skills to help people with various different conditions. Accupation, that is the root of my profession is looking at how disease and injury, illness, changes, redefines and individuals occupation, which is their ability to do the things of their life. So that's to be a student or a mom or a gardener or a athlete, anything that defines them, it's not a career, it's your jobs of living. And so I have looked at that from a childhood perspective but now with my emergence into this realm of chronic illness it has truly been, how do you redefine occupation with so much of how loss of chronic illness has changed individuals' occupations of life? And can you just describe to us how what you do is different and can work so well alongside the physical therapy elements that people might, I think it's probably more likely particularly in this country that people have been offered physical therapy and not occupational. - So occupational therapy and physical therapy are both allied health professions and it really does, they work in tandem to help a person who has had an illness or some sort of change to their physical cognitive functioning. Occupational therapy works on focusing on occupations, the roles of daily living to adapt and modify so that a person can do their prioritized activities with the new parameters of their disease or condition. So there are ways to try to improve their quality of life. We don't always, especially with people with post-exertional malaise, it's not necessarily about bringing them 100% back to health. At that point, it's truly about improving their quality of life so that they can do the things that they wanna do with their day. So PT and OT can work together, but I really do feel that OT has a bigger hand in restoring quality of living to individuals that are in crisis, that are just wanting to live their life and engage as well as they can. That's where I come in with trying to really analyze their activities, prioritize what they wanna do with their daily function, and then look at what the consequences of their disease is for their symptom presentation. - These conditions or patients in crisis that you describe and you may need to let's you've referenced with diseases that cause post-exertional malaise. You deal a lot with MECFS and long COVID, but alongside that, you also deal with the comorbidities of EDS, fibromyalgia, dysautonomia pots, and MCAS. That's another element. That's quite a big bucket there that you're dealing with. And for this to be useful to people, I don't want us to make generalizations of what everyone should do. So what I would love for you to do is talk to me about how you approach your individual patient and how that sort of overarching strategy that you use, not to say this is what people should do, but how do people even start approaching this idea of occupational therapy? Because it's not something that I ever received and when I learned about your approach and the way in which you are trying to give the patient back some power, some control of their life, I was kind of astounded that more people don't take that stance, that more people aren't given these tools for themselves. So those patients with that multitude of diseases and symptoms, where do we start with OT? - That's a brilliant question, because I think so many patients come in wanting just a little bit better quality. They have already been living with such loss for a long period of time and that long period of time could be three months or it can be 10 years. It is relative to that person. There is no judgment to say just because somebody has been suffering for five months, they need to continue suffering until they meet a certain benchmark. There is no benchmark. Every single person is unique and if it is debilitating for them, that is enough to be able to say I want help, I want to change, I want more quality. So right off the bat there, I want to say that I try to say there is no judgment. You cannot compare yourself to another individual with a post-exertional type malaise disease. You are unique and we're going to start building your platform of stability, because I think that's when people feel so much out of control with their life is because they don't know what to predict, they don't know what any type of activity is going to do to their body and the consequences of that activity is really scary. So what I try to do is kind of reimagine, and this is different than what other OTs and PT's do, but like in the traditional setting, it's mainly looking at building strength and endurance, range of motion, so that that would build quality of activity in life, not with this population. Predictability and control comes from understanding how your symptoms respond to stressors, and those stressors can be cognitive and physical, social, emotional, and environmental, like weather. All of those types of stressors have an impact on your symptoms. And I try to look at all of your symptoms are coming from your body as a multi-systemic response. And so what I do with my patients is I look at their symptoms and try to put them in a little bit of order for them to say, "Looks like your autonomic nervous system is very dysregulated when you do a certain type of activity." And it may be all the time, and they may say, "I feel dysregulation all the time." And I believe them, but some activities might cause a more vicious response. And so we try to put these in a little bit of, not necessarily categories, but at least a little better framework for them, to say your body typically responds to physical exertion with maybe nausea and heaviness. You feel like your body is weighted and cemented. And so we kind of work through the systems of the body to figure out what are the things that they can predict with a certain type of physical activity, being upright for 10 minutes causes their body to respond to a certain way. Now looking at it in a cognitive activity structure, what does five minutes of working on the computer feel like for you? And let's describe that in your body's systems. Do you get brain fog? Do you get blurry vision? And let's try to describe those systems, those body systemic responses to cognitive exertion. And then I look at it in the bucket of what is social emotional? Do what do happy emotions feel like for your body? Do you get a pounding pressure headache? Do you feel your body is wired and tired? And some of these overlap. A lot of times people will say, "I feel all of those symptoms, all of the time." And that's fine. I mean, it's not. Fine functionally, but that's fine when you're trying to figure out your foundation. Because I then work with them and try, once we have a little better structure in that foundation, then we can look at activities. And what is the best time for your body to perform that particular activity? Over time. And that gives them the control. I choose to do this activity now, knowing that the consequence is going to be, you know, prolonged experience. But I feel my capacity for that particular activity is balanced. And I have enough bandwidth in my body and my system to be able to do that particular activity for that amount of time. So that's where I work with my patients to really try to build out that framework so that they have a little bit more predictability and control in their day-to-day functioning. I think what is remarkable about that framework in itself is so many of us in the depths of that illness, particularly when you are very physically and cognitively debilitated, because this complete mire of everything is just a big mess. And turning it back to the patient and asking them to simply reflect on when you do this, pick those top three symptoms that are prevalent at that point. There's something about the specificity of it and the mindfulness of it that is powerful in itself, because you are enabling people to, instead of just being this big mess of symptoms and not knowing what to do with any of it, you're giving them a focus of being able to say, "Okay, this happens at this point." And once you start to attach these small little connections together, it becomes, I don't know, it feels like it becomes slightly easier to manage or slightly easier to have an overview of it. With this structure, you said before, you're not necessarily trying to return them to, I guess, what people call baseline or full health. But is this structure, is the primary focus to reduce post-exertional malaise, avoid post-exertional malaise when you start at this start point, what's the initial stepping stone of a goal? So the absolute initial is to feel what post-exertional malaise really feels like on a timeline, because people feel that rolling or kind of perpetual pamm that they don't know when it stops and when it begins. And I want them to feel it and then pause and let the process of that delayed post-exertional response or that delayed experience to kind of wash through their body so they feel that cycle of its intense and now it's letting up and now it's back to baseline. And so I really ask my patients and clients to do one activity, maybe it's to take a shower, that is a little bit, maybe beyond, I don't want them to do this all the time, but I want them to know that what they did was probably beyond their baseline, it's maybe above their capacity and then pause with that for two or three days to feel that response. They maybe initially felt their heart rate was in the one season. It lasted that way for three hours and then their body felt that heaviness and over the course of two days, they felt another set of symptoms from the original activity of taking a shower. And I want them to cycle through that experience to feel that full range so they know they're out of it. Because I think what happens is often people feel really intense symptoms and then they add another activity on and they haven't let that cycle wash through. And that cycle is the immune response or their cardiovascular changes. I mean, that's the part of this condition is there are systemic irregularities and those irregularities can happen through the course of three hours all the way to 72 hours. And we need to let that body process all of those systemic changes until they have that kind of biological change in their body and they get back to their baseline and more stable ground again. So that's what I try to do initially is try to let them know what it feels like because I have some patients that will say I do something on a Monday. Maybe I go to a doctor's visit or I take a telehealth call and I don't feel it until Thursday. And I would have never known that I'm still going through that experience from a Monday all the way to Thursday for that one activity. And now I'm not going to tell my patients to do nothing for those few days. I'm going to tell them once we understand that that's the process, you have the capacity to do something different in that window because you're not necessarily triggering that same systemic response. For example, if you take a shower on Monday and you are waiting for that delayed PEM response to hit you by Wednesday, maybe Tuesday you can do cognitive work. You are going to do something different. It's just you're not going to choose another physical activity because that's back to back from the same bucket. So I want my patients to really understand what the consequences are for that physical activity and what it really looks like in a really descriptive. I mean, we go nitty gritty into the details of what those systemic responses are for physical and then we look at cognitive and go nitty gritty. What does it feel like? What is your body responding to? That way what we do then is after we understand that. When we make the modifications and adaptations like, okay, well, maybe position needs to change or time needs to change or sensory light sounds touch can change because there are ways that we can make things better and easier. But we first have to know what that systemic response is. I love the way that it's really focused in on it because I think so much of the time with these illnesses, you're trying to push it away. You're trying to ignore it. All of these things are not happening. Instead you're telling people, let's look at what it is, face it and then maybe we can do something about it. It's almost a reverse approach to what I think so many people do. You mentioned just then buckets. You have a few interesting systems that are possibly different to the descriptions that are more commonly used. In terms of the buckets, you have three quite defined buckets that you have mentioned already. But would you just explain those different buckets for our audience? I would love to. Yeah. So I look at the energy envelope or spoons. I try to look at it in a more dynamic method. I'm a caregiver. I'm a mother of a child who's now an adult who has this condition. I have heard of so many professionals who are trying to say just pace. Teach this person, teach your family member to pace and just stay within their energy envelope. It's really hard. Especially when my daughter was a child, how do you do that? That's so abstract. I was really trying to get more details of it's not just an envelope that you have 100 points for the day. It actually shifts. And so I first want to describe another type of analogy is like an iPhone analogy that I think is a really detailed way to say that not everybody starts off their day on an iPhone 12 or a 14 platform. It can shift through the day. I mean, you can start out at a 14, but all of a sudden you hit middle of the day and you're an iPhone two. You really do shift your capacity. And then each activity, you know, a shower is not something an iPhone two can tolerate. A shower is actually needing a lot more capacity that would be more in an iPhone 14. So that piece of it, I want to show that there's a dynamic shift that happens within the person's day even. And so I look at when you have an iPhone, say 10 or 12, you can't do everything that you want to do for the day. And so what I then look at is my bucket analogy is that every type of activity has its own bucket. If you're going to take a shower, you're probably working in a physical bucket. Or if you're going to be doing computer work, you're probably going to be in a cognitive bucket. You're doing physical work, but you're really draining from that cognitive bucket. And then how I look at that is each bucket has its own water level for each day. So, some days we feel like we can do things that are more physical. And so that bucket, you can have more space in that bucket for taking a shower. You're not going to reach the brim and overflow as quickly on some days, where in other days, you are at the top. You have like two centimeters to go of cognitive work. You start the day at that level. So you're not going to be able to do a whole lot of computer work or analyzing or even a phone call because as soon as you reach that threshold, you overflowed and your symptoms get worse for cognitive. But you might be able to walk around the block, but you can't do anything cognitively. So that's where I use the buckets to really try to teach my patients. You have to look at how your body is for that day and analyze what space do you have in your bucket for physical activity. Or when you have this big assignment at work, you need to really cut back a few days before so that your cognitive bucket has a lot of space. You can choose things that are going to be maybe physical or emotional depending on how you respond and you overlap with that cognitive drain. So that's where I try to teach my patients that it's not just a blank slate, an empty envelope that you're going to fill with activity or cutting back 50% of all work. It has a lot more detail to it because the activities themselves kind of have a very dynamic interaction with your own body and the systemic responses that your body is going to go through. It's a fascinating approach. And I think that there can be a lot of overlap between the energy used in the physical and the cognitive that people don't necessarily realize. But the third bucket there that you mentioned is that emotional or social, do you think is that targeted one bucket? Yeah, like social and emotional. I mean, we can break these out into many, many buckets. But I try to keep it at least those three just so people can look at social emotional might be a phone call that has maybe some triggering topics. So that when I had you talking about the emotional thing, I think is something that I have not spoken to so many people about because there has been a discussion on the cognitive exertion that drives P that it's not just the physical exertion. But this idea that the emotional and when you say social, it's not necessarily just going out to a party that having a phone call and when you're living with these conditions and your nervous system is already on edge, some of these emotional things are not something that someone who was in balance would be triggered by. But a relatively normal conversation can be emotionally very draining for people with these conditions. And so to bring in that emotional, that social bucket in that sense, I find really, really helpful and something that's often overlooked. It's very, very overlooked. And people that are just maintaining, getting by, they're in their survival mode and they're ready to take on a conversation with somebody. They then are blasted by these landmines of emotional triggers that set them back. And it's not intentional, but it may be that the landmines from the social emotional conversation might not be, it may just be a casual mentioning of somebody saying, you know, how are you feeling? You know, I saw you out and about. You look great. It's enough for somebody to say, that's a landmine. I now have to go through and explain this to somebody and then they kind of expend exertion that they weren't prepared to be using. So I think the social emotional piece does go unnoticed and it's hard to recover from because I also really tried to describe that you are not necessarily as well balanced as they were when you were feeling healthy. So filtering information that you'd say should not be a big deal, but it is a big deal because I don't necessarily have the distractions or the ability to put that thought back in deep in my brain and that deal with it, they come through to your body when you, through emotionally, when you don't really expect them to. And sometimes when individuals, when people are feeling physically better, they now are struggling emotionally because they now have a little bit more capacity and they're bandwidth that they now feel like those emotional stressors come kind of seeping through and they're trying to filter those emotional stressors that they were otherwise keeping back deep down, buried down in their systems. So I think emotion is a very overlooked, but it is so important to recognize as a very instrumental piece of being able to keep still within your capacity. That's absolutely fascinating and there's so many layers to that emotional section of it because of the amount of changes that people have gone through, the amount of loss, the grief. There are changes in the prefrontal cortex that cause that dysregulation that it makes it harder to control anger and so all of that can sometimes be incredibly overwhelming for people and I love the idea that you take that into account and look at that because I think there's also a lot of shame involved with it and all of those things that people are going through that people are processing internally. So people might not be aware of this stuff to have someone alongside you that is able to start to look at the physical impact of those things. The symptom exacerbation that can come from that is quite incredible. And I'm not a psychologist, but I look at the emotional piece as exertion and I am an exertion specialist. So I'm looking at how does it impact you physically? How does it impact you physically? Even like we were talking about, a happy emotion is just as triggering, just as inertional as a stressful emotion. So when people are getting ready for a holiday, those are the things that really creep up. You don't expect a happy holiday to be something that's going to set you back and we need to discuss beforehand before these events happen. I go through with my patients to say, how do you want to spend your time celebrating Christmas or Hanukkah when you know people want to see you? Let's kind of pick and this is where it gets on a personal side is like, who are the people that you really want to see? Now let's see, how would you like to spend your time with that particular person? Because you are going to need to be in a quiet room with your feet up and without other distractions so that you have five minutes with that person that you normally do not get to spend time with and we analyze like some people you would love to see, but they're lower down on that priority list. So we go through that just so you're not overwhelmed with all of the people at once. We pull back and say like, let's do this in a small controlled way because otherwise you you will be overwhelmed and needing to leave the event early. And that's actually your approach across the board is what is of highest importance in terms of the physical in terms of the cognitive in terms of the emotional identify the things that are non-negotiable identify the things that you must do and how do you then enable yourself to do them in a way that's not going to push you into post-exertional malaise. Would that be fair, a fair kind of deduction of your structure? Yeah, yeah. We create wish lists and then what is the necessity? If you have to get something done, you have to eat. You have to go to the bathroom. You have to take care of at least have a conversation with your children. What are the wishes? Yes, you would like to change your clothes. Yes, you wish you could brush your teeth twice a day. But we are going to go through the list to find out what are the necessities that have to happen and then sometimes conversations with people or work assignments need to be pushed back because they're not part of that necessity list. So that kind of prioritization across the board in your life that takes place. When you start to implement some of these strategies with people, I know that you can't talk across the board, but does it have fairly immediate changes to people's post-exertional malaise to the way in which they do this boom and bust cycle? Or is it always a challenge to actually try and stop it implementing these things? It is hard. It is really hard to do. I think it's the marathon that we're looking at. It's not just win. one race and I think people will start out in this process of analyzing their activities and how their body has responded to those activity looking at their symptom response and feel like they are maybe failing at certain events and having a hard time. But I tried to really hold their hand and say, "Let's keep working through this because you are getting more information with each failure. You now have a whole bunch of insight. Let's figure out why that was difficult. Like you think it maybe was a failure? I don't. I think it was a gathering of a whole lot of information because we're not going to do it the same way. We're going to adjust that event that you just did so that the next time you are going to go do that and have, you know, for example, for one example, as I was working with a client a couple weeks ago and she just really, really wanted to go out to look at the water. She wanted to go with her husband out in the evening and look at nature. And so we planned like, "Okay, where are you going? How are you going to sit? What constitutes success for that outing? You want to look out nature?" And she, the first time when she reported back, she was like, "I felt horrible. We had to cut it short. We came home and it took me two days to really recover from that event." And I said, "Okay, let's figure out. Was it about your early termination of that event that you would do over? Like, was it your positioning? Did you need to go at a different time of day?" And she figured out that the light was too intense for when she went. So we pushed it back two hours. So the light was already softer, evening light. She brought along her zero gravity chair so that she could get out of the car and be in a semi-reclined position along the parkway. And she then figured out where they parked was too busy. They needed to be off down the parkway so they weren't part of a whole bunch of other people. But then she said they needed to probably stop about five or ten minutes earlier in the event. And I said, "Well, then that's what you're going to do is you're going to pick up on those symptoms. You're going to look at your kind of your head buzziness or your symptoms that are telling you that it's close to being done before they get there so that you are able to get back in the car and drive home and then get into a rested position at home." So we look at the whole event as a process. And as a learning experience. It's a learning experience. And each one of those times, so now she knows exactly when she goes out again to experience nature, she needs that much structure. But she doesn't have to go through the learning experience again. She already knows it. And that's just what we do is we kind of walk through each of those steps. And I think gradually, I also describe it as people are feeling like they're in the deep end of the water all the time. And the water just is constantly creeping up to their chin. And they're really working hard to keep it from getting above their head. And so by a long process of this type of analyzing, this much detail, we're moving them to the more shallow end. They're still going to feel a little bit of water level change. But they're not going to be overwhelmed by it. They're staying in a more manageable zone. So I think that this type of activity analysis that I do with my patients moves them closer to the shallow end. Even if they have a few setbacks, they're not up to chin level again. They're now back to the maybe shin level. I mean, yeah, they're feeling it a little bit more. But they have the tools to be able to bring them to rest and bring them into a more safe zone so that they are able to recover from that experience a little bit safer. I think that is such an important point because the water at chin level is just a constant fight for survival. That is all you're doing day to day is firefighting to just stay above water. And I love that idea of taking the steps that you are slowly. This is not an overnight thing, but you're slowly moving towards that safety, slowly moving towards a place where perhaps moving towards recovery is possible. And those little setbacks are not a roller coaster. They are trying to get them to be more speed bumps instead of a big roller coaster. So even if there is a setback, even if there is a big event that somebody is going to prioritize, they then might feel a symptom worsening, but it's not going to potentially put them into a deep, dark crash like they had experienced before. And that's what I want to give them more control over is you may feel worsening of symptoms, but I don't want you to fear that it's going to be such a debilitating life changing event that you have experienced in the past. And I mean, you have experienced it. You know what it feels like. And I want to bring them into a little bit more safe space. And I describe it as being their bubble wrapped. And I want to bubble wrap them with a whole lot of layers of bubble wrap so that they can feel more safe and secure so that we can gradually start taking layers of bubble wrap off of them so they are more stable. And they know that they can be able to tolerate some exertion and not have severe consequences. It's so insightful though to move through this process with someone like you that has just that vast experience because I think that I've heard you talking before about, do you need to put your sunglasses on whilst you're making your sandwich? That idea, and you just mentioned then that they lady had parked somewhere with too many people. I think people, when they end up in these illness situations, they have no idea about all of those contributing factors that can be overwhelming for the whether it's the nervous system that gets overwhelmed or whatever it is that drives us into the post-exertional malaise. And to have someone there who is able to identify things that have that potential is huge. I had such light sensitivity for so long, such sound sensitivity for so long. But I didn't understand that that's what it was. I mean, I wore sunglasses inside for a couple of years, but I didn't really understand. I thought that everything was just a bit too bright for my eyes. I didn't understand the impacts of what that was doing in the overall context of the illness. And to have someone alongside you that can just pick up on these things can change people's lives. It feels like, and I'm sure people have described it like they feel like their brain is on fire. And it is. I mean, it does that neuro inflammation. Some people will say that they almost feel like they're neurodivergent at different times. And those are true, true expressions. That is what they are truly feeling. And it is then the job of my job and other caregivers around you to pick up on those clues to say, let's turn off the lights. Let's close the blinds. Let's quiet your space. Maybe you need to go into a different room temporarily just so that you can have a little bit more quietness in your own body and your own head because I also have a background in sensory integration therapy. And I understand that it's the body he is trying to take information in, kind of rattle it around, make memories and make connections, neural connections so that you can move out and execute in a predictable or a fashion that has the correct type of response. And as the right is in a busy room, you need to be able to vocalize with a certain amount of force so that you can be heard. When you have this type of condition, and you don't know how loud your voice is, and you don't necessarily understand that just somebody's quiet whispering is not an attack to your nervous system. You really do feel it. Your body is telling you that was too loud and it just doesn't interpret the information correctly. That is a piece of this condition that I think once you have gone beyond your exertion, those sensory responses become so overwhelming. And so I think by limiting and quieting down all the sensory, the body is able to rest, and then it can be able to reprocess the information that is in the environment. And that is sensory across the board for I think once you're in this heightened state, for a lot of people, smells can just be absolutely overpowering. And even people touching you or having it is like that neurodivergent sensory issues when you have things on your skin and you don't want to be wearing clothes or things that constrict you. There's so much sensory input that again, it's all about those things layering on top of each other that all contributes to. Yeah, you're right, brain on fire is quite a good description because everything is, everything is firing, everything is driving a response in the body. When the person has a qualifier, and the diet or system. Then, in my experience, is that medicine becomes more effective. So, if somebody is in a heightened state of arousal, and everything is aggressive, you know, sound smells, everything is too aggressive, medicine is going to be aggressive, and it's going to be too arousing in too intense. So, that's where by lowering the amount of sensory input for a period of time. So, that medicine can really become more effective is how I work with my colleagues, like I work with the Bateman Horn Center and other providers. But, you know, we work very closely to say, this person is at a good stable place, their sensory system is well managed, now is the time to put a new medication. So, that we can just watch to see how that medication affects the body and the person is able to tolerate or titrate at a certain pace. So, we work together to say, this is where the body is the most ability, and now let's find the benefits of medicine. So, that's how I work with my colleagues. Even though I'm private practice, I collaborate a lot with other providers to say, this individual needs a lot of people on their team who understand how sensitive their systems really are. That's one of the things that Dr Melanie Hopper sees a colleague of yours, someone that you work with very closely told me that was not something that I was aware of, that she said that she would never introduce a new medicine or treatment to a patient when they were in a full-on crash. And to have someone like you there alongside these patients saying this person is not in a stable state, but understanding your patient's level there is quite incredible. This is something that you have really, really tried to change the narrative on in terms of your profession because one of the things that you say is that I think it's what you describe as this iceberg theory of therapy. And patients go in and see, maybe it's an OT, it's a PT, it's their consultant or their primary care provider. They are given various tests, they are put through their paces in that sitting, and it is taken as the level that they are on that day. And you say that it is not a correct reading for that care provider to see that patient on that one day and take that as their point of wellness or illness, because what comes after that day, that appointment with the patients with these post-exertional malaise conditions is the crash follows. And that's the essence of the disease is that in between the activities, that's the essence of the disease. I try to describe it as we flip the iceberg because any person can perform. You can push through and perform. You might not be able to do 10 minutes on the treadmill as well as you could when you are healthy, but you could, the consequences are devastating. You shouldn't, but you could if you had to. That's the whole thing is like, traditional therapies would say, do a warm up on a treadmill and then we'll go through your deconditioning. You don't have deconditioning and doing 10 minutes on the treadmill is beyond your capacity to begin with, where you dressed and you drove and you got there and you walked in the building. That is beyond what you would need as a warm up. You don't need warm up. So my whole point was, I don't want to see the activity being performed because people will just buckle down and do it. I want to know when they get up and do their just basic ADLs, your activities are daily living. What are the consequences in that that space that I need to know about and what does rest look like? So it's pretty much what are the consequences and then what does rest look like? Because rest is where people are needing really specific tools to be able to be calming the systems that they just activated. Do they need a weighted blanket? Do they need headphones? Do they need ice? Do they need compression socks or what was it about that activity that stimulated certain systems that now needs specific tools for that rest? And that, you know, call that support bag or drop bags. One of my clients who is an athlete talked about how when she would do long runs, she would put drop bags at different sites after 10 miles she'd drop a bag of a protein bar or whatever it was. I do, I want that for my patients to is to have their drop bags or their support bags ready to go after the activity. You've got everything right there. You don't have to think about what tools you need. You've already designed that that rest because you took that shower. Now you need this specific bag of tools to be able to get you through rest so that you grab rest as aggressively as you can and and then move on to the next you've achieved that rest quality and you move on to a maybe a cognitive activity later in the day or at a certain time period. Wow, the rest piece is a huge element of what people need and not something that comes easy for most people. I will hopefully be talking to a sleep expert in the next couple of weeks, but in terms of that rest for people who are potentially suffering from insomnia. Do you have any advice on how to maximize the way that the body can recover, even if they're not necessarily going to sleep? A lot of times people will say that they feel wired and tired. And that to me is saying that the body is wanting to get up and move or to kind of shake that that that experience out of their body they're wanting to kind of shake and move. I then look at how do you get it as passively as you can because I do not want them to move. I want them to have a quiet body so that they are not stimulated. So some people may like vibration. They might need there's little heating pads that have a little vibrating mechanism in them. So I'm having a little tiny vibration on their bed, but other people would say absolutely not that would horrible. So I just I feel like understanding what is happening in the nervous system and what is that body asking for other patients if they're feeling wired and tired. I'll teach their caregivers how to give their body joint compressions where they literally like push their joints. They'll move through their body joint by joint and give them very sustained controlled like repetitive push into that where maybe when we're healthy. They're standing up and kind of jumping very subtly just giving ourselves. But if somebody is is crashing, they're not able to do that in their bed having a caregiver give them joint compressions and it's moving from joint to joint in their body so that they get that proprioceptive input in a very subtle deep way. Other people like weighted blankets where they can feel that deep deep pressure other people are like heck no get that off of me. And I get it that's where I can just so personalized that it needs to be it's an option. But not today maybe it works for another time of your life, but not not for this particular experience. But I want people to have already gone through a little bit of a checklist to say what could work like what are what is my list so I don't have to think about it because in the moment you are not going to think I want you to already have it planned and written out as options. And that's what I try to do with my patients is to say it didn't work don't put it on the never again, but let's put it in the column that's maybe in a certain circumstance. But ice or heat or having all of the pillows and everything around your body is how you build that that comfort space when the body is quieter. It can then have more recover I don't I don't want to use the word necessarily recovery, but more recuperation from that activity, but I also find that sometimes this is the hardest place emotionally to be so that often will be the time when people can go and spiral into thoughts that are disturbing and are uncomfortable. And I try to then say if your body is needing this kind of support, how do you then also support your mind is it through something on audio book that is not a new book because you don't want to listen to anything novel you want to listen to something that's very familiar. And do you want to listen to music maybe you cannot listen to anything so is it your vision so I go through the senses with my patients because we want to use your senses as a distraction. Is it your eyes? You can look at something and it's also going to be maybe not stimulating, but maybe nature like a walk through the wilderness or train ride. There's so much on YouTube that you can just do a train ride through Croatia. Something that's going to be a beautiful scenery that you just want to escape to or is it something that's going to be a TV show that you don't need to hear the words, but you can just look at the characters and you know what the plot is. Going through like how many kids have watched Harry Potter a million times, those can be very comforting spaces to spend your time is just watching repeated shows. Now if somebody can't use their eyes or their ears, then we want to look at what smell could bring you into a safer space. Do you need a lavender or cinnamon or something that's going to be a scent? Because I don't want them to go cognitively or emotionally down a rabbit hole, I want them to rest with maybe a little distraction. So that's how I try then to rest those different elements of the body that are often most distressed for patients. Is it a fascinating approach? Because a lot of the time people will be like absolutely no distraction, just go to sleep and as someone who as a child, I used to always listen to the same audio book on repeat the same thing every single night. And lower my whole look when I listen to the same yoga knee drop on repeat when I when I've been going through my insomnia. So understanding those tools of familiarity, but the other thing that it highlights is it takes it right back to where we started and what it is is it's getting each individual to look at what does this do for you in terms of trigger or in terms of bringing you into that safer zone, moving you towards a more restful state, a more balanced state. But it's again tounding the spotlight on them and putting the onus on them, taking back control of putting their systems in place that they're then able to have they go to methods when they are in a dire situation. One thing that I just wanted to bring up after you just mentioned that joint compression is you are also trained in the parent technique. So you do or you are also involved in that sort of hands-on manipulation. And I wonder if you could talk to me about what the parent technique does and that idea of potential lymph blockage in some of these conditions and particularly the need to be able to move that fluid through the body. Yeah, so the parent technique really does try to capture the congestion that individuals with these complex overlapping conditions do experience. So it is part of the spinal fluid and that we are trying to move through the body. And so the spinal fluid isn't just in the brain in the spinal cord but also in the peripherals of the body. So we are trying to move that fluid through the tissues into the lymphatic system where it can then be removed from the body and processed. So the congestion that I see that people with ME and long COVID and PEM often experiences that disrupted sleep, that impaired sleep mechanism and when the body is trying to remove that fluid especially around the brain, it often happens at sleep. And people then are in that that caught situation of I'm not getting sleep but I'm causing more congestion. So the parent technique does help with moving and it's just it's very gentle but it can be very stimulating for people with an exertion intolerance. So it needs to be done also like our medicines in very small increments. They have a home program on the website that that patients, anybody it's free, it's it's accessible can access just to understand what the basic home program is and it's literally like brushing with your fingertips down the front of your face and along your neck and then up across the breast into the clavicle area to try to bring that fluid into a pump like response. So it's it's trying to work like a bellows like a one of those wood bellows where you're trying to bring in a little bit more pattern into your fluid cycle. And this does help with the congestion but it needs to be done at a very slow pace because too much is not always a good thing. So doing it very very low and slow is what is recommended for everything for post-exertional malaise but especially for this type of lymphatic and type of cerebral fluid movement. Because actually that too much movement of that lymph fluid can actually induce symptoms. It can make you feel so because it's essentially moving the toxins around your body isn't it and it can really exacerbate symptoms. Certainly in the fast few few times of doing it. It can it can yeah. Yeah I think people are just so sensitive to triggering their symptoms. So it is another way that symptoms are triggered and it just needs to be done in a very slow fashion. I feel like that is something across the board that we need to be doing all of these things incrementally just taking it slow, seeing if that if we can build it up and obviously in a completely individual tailored approach. We don't really have time today to refute the theory of get or of greater to exercise therapy but it's almost the inverse of that. It's this individualized tailored approach to just moving through moving backwards, seeing what works for you, moving sideways maybe rather than this is a structured program and you need to just be moving one step up every day. Correct. Yeah I view it as more wide where like the graded exercise and graded activity is it's linear, it's narrow. It's keeping things in one framework going in a certain direction and I see it as you do something fairly close to your baseline and then you move to the side and do something different and you give your body that time to heal and work through the body symptoms response and you move in a different direction and choose a different type of activity. So that's where I really do push back where a lot of times many of my colleagues not in the post-aggressional malaise world will say you're telling them to do nothing and I say no and actually telling them to pause and do something different that is also a priority. So it's not nothing it's actually doing a lot but just in a different direction. So there are times when people do need to stop altogether and just really aggressively rest that's needed but once the body is at a stable platform then you kind of veer out in different forks in your road so that you're moving in a real dynamic way. So I think it's teaching people to be more multi-dimensional in their activity because we aren't only exercise-driven. I mean we have so much going on in our lives that is just I need to be able to function in my life using so many different types of activities of daily living exercise and graded activity is not part of that picture at that particular time. When you can do all of your activities of daily living without severe consequences then you consider moving to strengthening a range of motion but in a very very very supportive and controlled method. Yeah so I think that individualized supported those would be the things that people with these conditions need to be looking for. This has been a wonderful conversation. Thank you so much for giving me your time. I love having conversations with people like you. I think I'm pretty well now but I've had this for five and a half years and I still get astounded by how there are these approaches out there that I would never have access or knowledge of them if I just stayed in the mainstream medical system here in the UK and I think it's the same in the US and worldwide that people do not know that there are these resources that are available that can absolutely make the difference between this constant cycle five years of feeling like absolute rubbish. There are things that people can do. Maybe not to recover but to maybe make small incremental gains in their quality of life and that is what you're about. You're about helping people restore that quality of life. Yeah absolutely. Yeah I think that it unfortunately it's not a magic pill but if you get a slight improvement now and working down the road for even more you're going in the right direction and that's where I want to lead my patients to say let's get you just going in the right direction with that with the Going in the right direction, your body can start healing and. restoring better health, but if you are constantly adding more stressors and layers of triggers to your body, it's a fighting battle. You're trying so hard to get to a certain place that you're not able to get there successfully. So that's, yeah, absolutely. That's where I'm trying hard to teach my colleagues to really enhance that piece of, I'm really really wanting to give them the tools so that they go off and be able to implement this on their own. Just remarkable. I really, really appreciate your work and the fact that you're not only trying to help patients, that idea of sharing your knowledge with colleagues who do not necessarily operate in this same space and have that same access to the everyday lives of patients, is huge for people suffering. So thank you. I appreciate, I love your podcast. I, yeah, I eat up all of the, I listen right away. So you're doing a marvelous job with this. Yeah, I love it. I just loved talking to Amy. Anything that we can bring here to help patients feel that they are in control of elements of their life is huge. I guess it's because of the way that she approaches things not only as a clinician, but also as a mother of someone who has these complex chronic conditions that enables her to have these insights and this humility, this understanding of what it is actually like to live with these illnesses. I particularly enjoyed the thought process of taking the negative results and negative effects as a learning experience instead of a failure. And I think if we can use that kind of mindset and change the perspective, it enables us to start to be able to move forwards a little and build. As ever, I would love to hear your thoughts and I am so enjoying all of your feedback and your comments. It's huge for the show to know what you are enjoying, what is worthwhile for you. So please do keep some coming like review on the apps. And I would love to hear if any of Amy's methods have struck a chord with you, I would love to hear if you try any of the things that she suggested. And what has been your experience with occupational therapy? Am I alone not having access to any such thing here in the UK? Really look forward to hearing from you. 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.