Improving quality of life - managing P.E.M. and moving towards stability

Amy Mooney (32:35): 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 feel 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 analysing 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.

Emily Kate Stephens (33:58): 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,

Amy Mooney (34:31): 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 prioritise, 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 they're 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.

Emily Kate Stephens (35:50): 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 the 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'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.

Amy Mooney (37:13): 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 those that neuro inflammation. Some people will say that they almost feel like they're neurodivergent at different times, and those are true expressions. That is what they are truly feeling, and it is then the job of you know 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're 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 is trying to take information in, kind of ravel it around, make memories, and 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. Let's say you're in a busy room. You need to be able to vocalise 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 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 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,

Emily Kate Stephens (39:12): 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 firing. Everything is driving a response in the body,

Amy Mooney (39:56): And when the person has a quieter 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, sounds, smells, everything is too aggressive. Medicine is going to be aggressive, and it's going to be too arousing and 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 Horne 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 has the most stability, 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 understands how sensitive their systems really are.

Emily Kate Stephens (41:22): That's one of the things that Dr. Melanie Hoppers, who's 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.

Amy Mooney (42:50): Yeah, 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 well and 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 you know, traditional therapies would say do a warm up on a treadmill, and well, 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, you know, 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 of daily living, what are the consequences in 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 and that I you know I call that support bag or drop bags. One of my clients who's 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 too. 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 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 maybe a cognitive activity later in the day or at a certain time period.

Emily Kate Stephens (45:41): 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 maximise the way that the body can recover, even if they're not necessarily going to sleep?

Amy Mooney (46:20): 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 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 are 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 be 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, we would be standing up and kind of jumping very subtly, just giving ourselves, but if somebody 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 pressure. Other people are like, "Heck no, get that off of me, and I get it. That's where like it is so personalised that it needs to be. It's an option, but not today. Maybe it works for another time of your life, but 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 comfort space when the body is quieter, it can then have more recover. Or 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 audiobook 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. 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.

Emily Kate Stephens (51:09): It's 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 lo and behold, look what I listen to the same yoga nidra on repeat 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 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 turning 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 their 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 Perrin 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 Perrin 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,

Amy Mooney (52:42): Yeah. So the Perrin 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 that we are trying to move through the body. So the spinal fluid isn't just in the brain and 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 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 caught situation of I'm not getting sleep, but I'm causing more congestion. So the Perrin 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 programme on the website, that patients, anybody, it's free, it's accessible, can access just to understand what the basic home programme 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 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.

Emily Kate Stephens (54:55): 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 first few times of doing it

Amy Mooney (55:14): Can. It can. Yeah, yeah. I think people are just are 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.

Emily Kate Stephens (55:28): 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 graded exercise therapy, but it's almost the inverse of that. It's this individualised, tailored approach to just moving through, moving backwards, seeing what works for you, moving sideways maybe, rather than this is a structured programme and you need to just be moving one step up every day.

Amy Mooney (56:14): 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-exertional 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 of your in your road, so that you're moving in a real dynamic way. So I think it's teaching people to be more multidimensional 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 and range of motion, but in a very, very, very supportive and controlled method.

Emily Kate Stephens (58:08): Yeah. So I think that individualised, 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. Is you're about helping people restore their quality of life.

Amy Mooney (59:31): 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 truly wanting to give them the tools so that they go off and be able to implement this on their own.

Emily Kate Stephens (1:00:33): 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.

Amy Mooney (1:00:53): Yeah. No. I appreciate. I love your podcast. I yeah. I eat up all of. I listen right away. So you're doing a marvellous job with this. Yeah, I love it.

Emily Kate Stephens (1:01:09): 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, the 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 them 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.

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