170 - Amy Mooney - "Flipping the Iceberg" - What if everything you thought about recovery is underwater?

Amy Mooney shares her unique perspective as both an occupational therapist and caregiver to her daughter with ME-CFS, revealing essential insights about rest, recovery, and meaningful approaches to chronic illness management.

• 25 years of occupational therapy experience transformed by caring for her daughter with ME-CFS for the past decade
• Learning to see "beyond the iceberg" - what practitioners miss when they only observe patients during clinical visits
• The concept of "aggressive rest" as an active strategy rather than simply doing nothing
• Understanding different forms of exertion: physical, cognitive, emotional, and sensory
• How each person has different "buckets" for various types of exertion and unique symptom patterns
• The importance of preemptive rest before activities and recuperative rest afterward
• Creating personalized support systems that address individual symptoms and priorities
• Safely testing boundaries rather than pushing through prescribed exercise protocols
• Why prioritizing activities that bring joy and meaning is crucial for quality of life
• Being cautious about delayed responses to increased activity - sometimes PEM hits 3 days later

Amy has been working with Bateman Horne Center to provide education and resources to medical providers, helping ensure patients receive appropriate care focused on true rest rather than harmful exercise regimens.

Links:

• Amy's private practice: www.OT4ME.com
• Bateman Horne Center's rehabilitation professional resources and videos: https://batemanhornecenter.org/providers/mecfs/diagnosing-managing/rehab-professionals/
• Peer-to-peer Facebook group (for therapists only) - PT, OT & SLP Resources for Treating ME/CFS:

For more information about Long Covid Breathing courses & workshops, please check out LongCovidBreathing.com

(music credit - Brock Hewitt, Rule of Life)

Chapters

• 1:50 Meeting Amy Mooney, OT & Carer
• 4:03 Journey Through Unexplained Illness
• 10:18 The Caregiver's Experience & Perspective
• 16:13 Redefining Occupational Therapy for Chronic Illness
• 23:18 Understanding Different Forms of Exertion
• 32:59 Strategies for Deep, Aggressive Rest
• 41:31 Safely Increasing Activity & Avoiding Crashes
• 51:38 Closing Thoughts & Gratitude

Transcript

Jackie Baxter: 0:55

Hello and welcome to this episode of the Long Covid Podcast. I am delighted to welcome today Amy Mooney, who is an occupational therapist specialising in ME/CFS, also a Perrin practitioner, and she also has lived experience as a carer. So we're going to dive into all sorts of stuff here. I'm so excited. I don't quite know where we're going to end up, and I think that is the beauty of it. So a very warm welcome, amy. It's so nice to have you here.

Amy Mooney: 1:28

Thank you so much, Jackie. This is fun. Thanks for having me on.

Jackie Baxter: 1:32

Oh, you are so welcome. It is my pleasure. Before we dive too deep into all of this, can you say a little bit more about yourself, and maybe what it is that you do?

Amy Mooney: 1:46

Sure, I am an occupational therapist and I have been in this field for the last 25 years or so, really working in a variety of settings, in the clinic, in schools. My main focus has been pediatrics and sensory integration type of therapies. But I have had to put that practice to the side. For the last 10 years I've been the caregiver for my child. My now 19-year-old daughter was nine when she first got sick with something. We were not sure what it was, but she just was not recovering and we spent the next few years trying to figure out what it was. And so I am an occupational therapist by training. But I think my type of practice has completely turned to focus on chronic illness, because I know how important it is for patients to get the right type of care, and this is also just it's my new calling, it's providing care. That I have learned through my daughter's experiences with the disease.

Jackie Baxter: 3:06

Yeah, and we were talking just a little bit before we hit record, weren't we, about how valuable the lived experience is, particularly in this kind of world of I'm going to put this in hefty kind of quotation marks, but you know unexplained illnesses, or you know complex chronic illnesses, or you know whatever you want to call them.

Jackie Baxter: 3:27

You know. I mean you just said that your child got unwell with something and I think you know that was a lot of people's experience before long COVID. You know it was something, whereas with long COVID obviously it was. You know it was one virus, whereas with long COVID obviously it was. You know it was one virus, or possibly a vaccination or a combination of the two, but it was much more clear cut exactly what it was. And you know, I don't know if that made it any easier, but I think certainly it made some things a little clearer, whereas my understanding of the sort of ME-CFS community and what came before long COVID was, you know, a going into a medical setting which is the same as what patients, unfortunately, would experience now, and that's what's really frustrating is, you know, what would we have wished 10 years ago?

Amy Mooney: 4:35

we could have learned from this experience and there are new opportunities for care, but it's still. When a mother, you know, is trying to get care for her child, they go through the same steps as what we did 10 years ago too. Now there's a lot more potential for intervention sooner, which I'm glad for, but I think a lot of the initial recommendations still stay the same, especially for people that are in more rural settings. They maybe do not have access to the bigger, long COVID clinics, but even going to those long COVID clinics, are those the appropriate care facilities? Are they offering what is really recommended for resting and really figuring out what types of symptoms this patient is experiencing, instead of, you know, giving them graded exercise therapies or even, you know, encouraging them to do? You know visual therapy or auditory therapies? You know those are exertion too. You know visual therapy or auditory therapies you know those are exertion too. You know having to do different types of stressors on the sensory system is considered a graded activity, and we need to understand as a whole that just doing any type of continuation of kind of triggering that same response is going to be stressful for the body. So yeah, I think you know it's been a hard path to take, but I feel like for me it has been something that I would never wish on anybody else to have to experience, that I would never wish on anybody else to have to experience. But that kind of education that I learned from witnessing my daughter go through the you know more or less the trauma that she went through taught me how to be a better provider and how to be more empathetic and how to listen to my patients.

Amy Mooney: 6:39

I never, when somebody says I really didn't sleep well, I would never, ever, ever say it's probably because you were on the screen too much, or it's maybe because you were distracted or have thoughts that you should not be processing at that time of day. That is absolutely not the cause for restlessness, sleepless types of symptoms. It's part of the disease. It's part of how the person is experiencing PEM or how their body is. You know, having different like maybe having, you know, stomach pains and different things. Things are part of the disease process that you can never judge it as a behavior. Once you have witnessed this firsthand, it becomes quite clear that this is a whole disease process. So I'm sad that I have to have been witnessing it from my daughter's perspective, and I'm even more sad that my daughter has have been witnessing it from my daughter's perspective, and I'm even more sad that my daughter has had to experience it.

Jackie Baxter: 7:45

Yeah, and you know it's. It's a really difficult thing to to talk about, isn't it? Because you know whether it's yourself or someone close to you and in the case of your daughter, you know you wouldn't wish that on your worst enemy, let alone someone that you care daily for, or yourself, you know, and it's an absolutely dreadful thing to go through, and you know, watching someone else go through it I don't think it's worse or better, but it must be really, really difficult to watch it happening to somebody else, and you know, being a carer for someone must be incredibly difficult, you know. I mean, I think I sort of dismissed my partner's experience of my illness in a lot of ways, because he didn't have it as bad as me, because I was experiencing it. You know his, his experience was kind of neither here nor there, and I think you know now you know, on from that, I'm able to kind of see a little bit more that you know, yeah, he was able to escape my illness, whereas I wasn't, um, you know, I was living it every second of every day, but that didn't mean that he wasn't hugely impacted and traumatized by it and that it didn't change, you know, every second of his day as well, you know, and I think you know it's important, I think, to say that about people who are caring, whether it's for a partner or a parent or a child or a friend or whoever that is, or a child or a friend, or whoever that is.

Jackie Baxter: 9:25

Um, but yeah, you know that lived experience that it has given you, you know it's, I'm sure, made you a much better practitioner and a much better, you know, professional at what you do and you know you, you would give that all up to have not had that experience with your daughter, right, but you know, yeah, it's a very difficult line to tread. I think that one, isn't it? You know? I say the same about, you know I wouldn't have wanted to go through it. It was awful, but it has made me a better person. So where can I kind of stand on that? That makes me not invalidate the experience, but also try to take something from it, and I think it is. It's very difficult, isn't it?

Amy Mooney: 10:06

It is. It's you know that expression of you know, with lemons you make lemonade. You try to do what's best, but I still think you know these. You know these, these experiences I, you know, and I think my daughter too. She wants to pay it forward. She's not well, she's not back to health, but she's become more stable and that has allowed me to do some things independently of just being a caregiver. So with those experiences, you know, my daughter can now do more things for herself or even have other people help her in different ways, where a few years ago all she wanted was mom's help. She just wanted me and only me, and it was. It was fine, that's what I, that I was grateful I could do that, but as she has aged, she wants me a little bit further. She's just like you know, I'm an adult now too, and I can do things for myself. Going to make her more stable in her day allows me to do a few more things that I'm, you know. I'm hoping that I provide more education opportunities through, you know, interviews like this, or even, you know, doing some webinars or doing things with Bateman Horn, which I've been doing a lot more outreach with.

Amy Mooney: 11:38

That I want to be able to pay it forward to other medical providers, because I do not want one more family to have to have to go to their doctor and their doctor say I have no idea what this is. You know, this is, you know, good luck, come back in three months if you feel. If you don't feel, better. And that's that is what happened to us. I'll give you a little of the backstory because I think that's, you know, it's helped me develop kind of my therapy approach, because when I so to go back a little bit was, you know, my daughter became sick. We didn't know what it was. We went to the pediatrician. The pediatrician said I have absolutely no idea what it is. Come back after a few months, a few months later, you know, testing. We had, you know, gotten blood, blood testing. You know all all the imaging, nothing was wrong. Great, you're, you're, you're within normal limits, you're, you're fine. Well, no, she's not fine, but okay, I guess this means that we move on. So we finally went back to the pediatrician and she said you know, I just saw this continuing education. I have no idea what it was, and this was 10, 11 years ago, so I don't. I kind of wonder which program she watched. Because she said, you know, she got a medical education video at some point that just mentioned the word myalgic encephalomyelitis and she's like I have no idea what it is, but there's the word Go look it up.

Amy Mooney: 13:13

And I did, and that's where the journey began and I was able to then get appointments for my daughter with specialists who were on the East Coast. So we literally like ping pong between East Coast and West Coast to try to get her care within the first couple of years, and in that time she was given the diagnosis but there was no real treatment plan. So then it was a matter of like now what do we do with this diagnosis? And figuring things out. But I was able to meet the amazing community out there that is the ME community, and this is right.

Amy Mooney: 13:53

You know the beginning before Millions Missing really stepped up and started doing a lot of their advocacy campaigns. And you know, me Action was starting. We were working to get legislation through our state representatives, and so there was a lot of advocacy going on, but still the education piece was lacking. There wasn't a real plan for what you could do. And how do you? You know you can't do graded exercise, but what do you do? And so that piece of it started developing more and more in my mind and in my kind of my heart, of like this.

Amy Mooney: 14:32

There needs to be more, and I'm an occupational therapist and you know all of these patients are really losing their occupation. And to give you a little bit of background on what occupational therapy is, it's the building blocks for you know your occupations are your daily living roles. You're a sister, you're a partner, you are a gardener. All of those things take certain activities. To be able to do the job of being a gardener, you have to have physical strength, you have to have a little bit of endurance, you have to have range of motion, you have to be able to tolerate being outside. You need the sun, the wind, all of the sensory components. You know the sun, the wind, all of the sensory components.

Amy Mooney: 15:19

And when you have ME, all of those type of stressors start making your body worse. And so an occupational therapist is somebody that you know we're in the healthcare professional community, that we look at the nervous system and the cognitive demands that it takes, all of the components of being able to do your occupations and when disease or illness affects that you are not able to do the job that you want to do, and for people with ME it goes down to even the basic components of self-care and, you know, feeding those are still parts of your occupation, but those are being kind of impacted with this disease. So not only are you losing your hobbies and your passions, but you're also losing your abilities for self-care. Um, so I'm thinking, you know, looking at other patients, other people with me, how how much of their autonomy is being kind of impacted by this disease is really a core component of their identity. And so I sat for a long time trying to figure out if somebody is going to provide therapy for people with ME. They need to really address their occupations. They need to address what makes them unique to themselves, and, you know, if they're getting stripped away from their ability to be a teacher or a family member, what are the things that we can build back in to be able to bring them improved quality of life? We're not going to be able to get them necessarily back into their job in a classroom, but we can give them some pieces of quality to restore autonomy in their life.

Amy Mooney: 17:21

And so so with my daughter. You know she was a child. She was a friend, she was a sibling and a lot of those roles. She couldn't go to a sleepover, she couldn't go to, you know, for a family outing. She was limited to her room and pretty much to bed. So I was trying to get her the care that she needed. So of course we took her to the rehab centers and gave her all sorts of physical activity, physical movement, and that was absolutely the wrong thing to do because that was causing her more and more pain.

Amy Mooney: 17:59

And so I, trying to be the diligent, you know OT would say you know what this is, what's going to make you better? We have to keep you moving and we have to build you up. And I would, you know, pretty much, pick her up after this session and put her in bed and just try to get her back to her baseline again. And I knew that the OT, or the PT that was, you know, giving her care, did not see that they could not, they did not witness that that crash after the activity or the exertion. And I kept telling them you're not seeing it. Yes, she could do the five minutes on the treadmill. Or they had her playing catch because she loves softball, and so they had her playing catch with the therapists and trying to keep up with her balance or her coordination, and I said you know what those activities were not? She did not come back from that activity for for weeks. And now we're back again to exert and it'll just be that rapid that cycle. And so finally, you know, after a couple months of those type of therapies, you know, said you know, goodbye, we're not coming back because this is making her worse. And I feel horrible that that's what happened. But that is still the reality of you know. I thought I knew what was best and it wasn't.

Amy Mooney: 19:34

And so with those experiences I kept on thinking, like they, if this was the iceberg, they are seeing the very, very tip of the iceberg. They're seeing what she can do in the clinic. They cannot see what's under the water. One of her teachers at that time she wasn't going to school, but we would still do, you know, check-ins with the teachers and the teacher said you know, she was almost like a little ducky paddling as hard as she could. You couldn't see her little feet moving, but she looked still on the top and looked like she was taking in the information. But she was working so hard and we knew she was working hard. That's exactly what I felt, like she could do the work for performance, but she could not keep up. It was just it was wearing her body out. And so I felt like it's the iceberg that she was she was getting pulled under from.

Amy Mooney: 20:29

And so, as in my therapeutic brain, I'm thinking you know what we need to flip that iceberg? That's where the therapy needs to happen. It does not happen. You know, she does not have to perform, that's she can perform. It's the iceberg being flipped. That is the essence of the disease, and it's the activity between, or it's the time between the activities. That is the part of the disease that nobody can follow. And so that's where I spent my years trying to figure out how do you capture that flipped iceberg.

Amy Mooney: 21:09

And that flipped iceberg is, to me, is symptoms, like monitoring symptoms and also monitoring rest. How well? Because if somebody gets good quality rest, their baseline starts to slowly, slowly, slowly raise. And when they have their symptoms under control, when their symptoms are managed and they have good, effective rest and it's not doing nothing I'm doing air quotes here it is truly doing aggressive rest. And that piece of the aggressive rest is how do you cut your sensory system down to nothing? How do you take away your vision? How do you take away the sound? How do you take away your internal buzzing? How do you take away the sound? How do you take away your internal buzzing? How do you quiet your body as best as you possibly can so that rest is achieved? And it is the hardest thing on earth to do.

Amy Mooney: 22:09

But I feel like that's where I try to offer support for my patients is giving them. You know your body feels like it needs to move, it's wired and tired. How do you quiet that? Can a weighted blanket calm and give that body the information? Can somebody give you proprioception into your legs? And you know joint compressions or do like kind of like a pedaling with your legs, just so your body knows that it's moving but you're not exerting so that it can calm the system down.

Amy Mooney: 22:46

So, neurologically, how does your body go through? It's telling you something, it needs that kind of input. But how do you do it without exertion? And that's where I try to, you know, really try to problem solve with my patients is what is your body telling you it needs before it goes into a deep, deep rest?

Amy Mooney: 23:07

So that's the piece that I feel like is when you get your rest and your symptoms managed, then you can make a very specific prioritized activity choice that is meaningful to your occupation and that may be something you know that you know a therapist would say that seems like a silly choice, Like really you want to, you know, just make a sandwich, you know. Or really you just want to answer an email. I mean, that is the person's choice. They would rather write an email to their grandkids than take a shower. That's where the prioritized events are. Having a clean body is not super important when you'd rather make communication with a grandchild or catch up briefly with a friend. That's where it becomes so individualized. So that's the piece that I feel like. Flipping the iceberg is the process for getting the type of care that people with PEM, with post-exertional malaise, needs. That's specific to their occupational choices.

Jackie Baxter: 25:07

Yeah, absolutely, and I think you know what is it that my body needs. You know, that is one of the most valuable things that we can learn. You know, when we're unwell, we learn out of necessity, um, because we have to start understanding what our body needs, because, you know, if we get it wrong, the consequences can be pretty catastrophic, you know, um, and pretty traumatic as well, um, but it's also something that you know that I use every day and it makes me a much healthier person. You know, I don't do some of the stupid things that I used to do that were actually really unhealthy, because I am much better at listening to what my body truly needs. So I think you know that is such a valuable thing and it's very, very difficult to learn as well. You know, it's definitely a process, but I think you know. You touched on, I think, two well, many, many, many valuable things, but two things that really stood out to me there was that what each person wants or needs is very individual, and that we as a practitioner, or someone as a practitioner, can't tell that person what's important to them. You know, a child is going to have different needs and different requirements, maybe to an adult, but what is it that is most important to you? You know, we hear about occupational therapy or occupational health, most often in regards to work, return to work, work, or you know, how are we going to get you back into work? Let's send you to an occupational health. You know, and some occupational therapists are wonderful and some, I'm sure, are not, and I'm sure there are some very good ones that also don't understand the condition, and I think you know it can be very valuable in helping someone back into work if that's where they are. But also, as you said, you know, occupation isn't just your job, it's also everything about you. And actually, for someone you know, returning to work is not on the table at the moment. You know, ok, where is this person? Let's meet this person where they are in this moment. Where is this person? Let's meet this person where they are in this moment. And is that, yeah, taking a shower, making a sandwich, communicating with somebody else? You know what is the most important thing, or maybe it's the most important thing is what is going to bring you the most joy, you know, the biggest bang for your buck kind of thing. You know, I think that's so important.

Jackie Baxter: 27:38

But I think what you were also saying about the different types of exertion. I think this is something that we don't understand until we experience something like long COVID or ME-CFS exertion was climbing a mountain, exertion was getting on my bike and you know all of those sort of exercise things. I wouldn't even have seen walking to the bus stop as exertion, it was just something you did. And then when you have this experience, suddenly sitting up in bed is exertion. Climbing your stairs is like Everest. You know, just moving around your house is incredibly strenuous physical exertion. But it's not just that. It's the opening a book and trying to read half a page oh my goodness, you know. Or trying to read an email or have a conversation with somebody you know are also, you know, quite strenuous forms of exertion.

Jackie Baxter: 28:38

Things like the emotional one was one of the most difficult ones for me because you can't predict that. You know you can stop doing in terms of physical stuff. You can stop doing in some ways the sort of cognitive stuff, because you can not try and read your emails but someone have making a hurtful comment at you. You can avoid that. So that was a very difficult one for me and you know there's all sorts of other things aren't there. I mean, you were talking about light and sound and motion and things like that, and you know, different people are sensitive to different things in more or less ways. I've definitely noticed that, that actually cognitively some people do quite well, but they're really sensitive to light, for example. So everyone's very, very different.

Jackie Baxter: 29:26

But I think, again, you know one of these things that if you don't have that kind of lived experience, it's very, very difficult to understand how someone putting a light on or someone raising their voice or the doorbell going or trying to read an email can make someone feel so incredibly unwell with these kind of long lasting consequences.

Jackie Baxter: 29:52

You know it's not just that you feel unwell for five minutes, it's that it can be days or weeks. So I think you know that's such an important thing for other people to understand those around the person who's unwell um, people who are working in, you know, trying to get people back to work, or doctors or whoever but also for the person themselves to actually get a handle on that, because that was one of the hardest things for me was to get me to understand that actually the reason that I was crashing really hard was actually because I couldn't turn my brain off half of the time. It was. It was what was going on up here that was exhausting me, um, and how could I find a way, as you were talking about, with the sort of proper, like real rest? How can I actually rest those bits of myself?

Jackie Baxter: 30:41

Um, so yeah, it's so, so powerful, I think, what you've been saying and what I would love to dive into a little bit. Um, I know I appreciate we've only got so much time, so, um, what, what would be some of the strategies to really help with this? How do we get into that kind of deep? You know, you said aggressive rest, I think, which I love that aggressive rest, you know, that sort of deep, proper, real rest where we are properly switching off from not only the world but also kind of ourselves as well. You know, what would be some strategies to kind of help with that? What would be some strategies to kind of help with that?

Amy Mooney: 31:22

Great question. So I see that and Bruce Campbell and others have written about this that there are different types of rest. There is like a pre-activity, or what I call the preemptive rest, and then the after activity or the recuperative rest. And those two types of rest can, they're different, and so the preemptive rest is looking at. So, looking at the activity that you're going to be doing, it's already pre-planning for that activity.

Amy Mooney: 31:58

And if you look deeper at the activity, you can analyze your symptoms for each type of activity. So yes, there's physical exertion, cognitive exertion, social, emotional exertion, sensory exertion. I think sensory goes over all of it, it's the umbrella over everything. But if you think of each of those exertions as being their own bucket and they both have they all have their own kind of water level. So if you're physical, if you can only tolerate maybe a thousand steps, you've already identified that you have the capacity, the functional capacity, for maybe a thousand steps. Or you have only five or 10 minutes of being upright, you're getting kind of close to the brim of your physical bucket and it doesn't take a whole lot to go over and that's kind of going over your threshold or getting into that crash zone. But you may have a bucket for your cognitive activities crash zone, but you may have a bucket for your cognitive activities that's a lot lower, that you can do a lot more. You have a lot more space before you reach that brim and so you can do more cognitive exertion, having maybe more time on an iPad or different types of cognitive exertions. And then the social emotional can be the happy and sad emotions, and I think that's what's so tricky is that you can go for a holiday or not go for a holiday but have a holiday, a birthday, understand that your family member is going to have a birthday. You're remembering different times that bring happy emotions and then you realize that was really exhausting. I don't know why I didn't do anything, but those happy, euphoric type of emotions bring on stress to your body also.

Amy Mooney: 33:53

So, just understanding what types of buckets you have, and so the preemptive rest is looking at what your symptoms are. You know, maybe my heart rate is very unstable. I have this really high pressure headache. My brain fog is really intense. Well, what types of symptoms are most triggered by those buckets, by those exertion categories? When I'm upright, you know, for kind of, you know, brushing my teeth at the sink, my heart rate's going to go even higher. I probably shouldn't be standing at this moment, so I'm going to make a different choice.

Amy Mooney: 34:31

So identifying which type of activity, based on your kind of snapshot of your symptoms, is how you do your preemptive rest. You lower those symptoms. You put your feet in a certain you know, put them up against gravity or up so they're not fighting gravity, blood flow is supported. You might put an ice pack on the base of your neck to even calm your autonomic nervous system. You do things to prepare your body for that prioritized activity. Now you've done the activity and that's where I like to get you know more into the details of how you actually perform an activity, using you know tools to make things easier. Do different types of strategies, such as, you know, turning off the ceiling fans so the bathroom isn't so noisy when you're taking a shower, sit on a bench instead of having to stand up, change the temperature of the water all of those things that you can do to modify and adapt the activity. And then, after the activity is done and you're still within your kind of core, kind of components of your recovery zone, that's the recuperative rest and that really is how you calm your system back down from the triggers that were just the stressors that were just activated. How do you calm your heart rate? How do you quiet your head, your thoughts, the buzzingness, your internal vibrations? How do you get your body back into a more supported environment? And that's that's. It's detailed, but I think that that's where you start to really figure out, and we call those kind of like the support kits.

Amy Mooney: 36:25

You've already, you've already planned these out ahead of time. This isn't something that you should be doing as you're in the middle of recuperation. You should have already planned out. When I do this activity and I'm going to just use the shower for an example After I've taken a shower my body is going to be really it's going to be hard to regulate my temperature.

Amy Mooney: 36:47

I'm going to be shivering, I'm going to be maybe lightheaded because I've been standing up more than I should have. So what are the things that I'm going to need immediately? I'm going to need my robe. I'm going to just climb right into my warm bed. I should maybe have a heating pad already on the bed warming my spot smoothie. I'm going to have, you know, maybe even you know, sometimes even having like a little bit of a vibration quiets the body. So using like a little vibrator tool that's going to like be on your chest, like Sensate or some of the other technologies, that just gives you like a soft vibration that can be very, very calming to get the body back into a regulated state. So those are all very, very individualized, but those are the support tools that you need to have already pre-planned.

Amy Mooney: 38:16

And also, after you get through the recovery state, the recuperation, it's really important to kind of problem solve and be like nope, that's not doing it anymore.

Amy Mooney: 38:27

I'm getting some other symptoms that now need to be addressed.

Amy Mooney: 38:31

So, going through it as a moving document to really figure out for these types of activities, this is the support system that I need in place to be able to get me through, to actually heal and aggressively rest as nurturing and I call it, you know, bubble wrap like how many layers of bubble wrap do you need to get through that period?

Amy Mooney: 38:57

And if you sometimes need another layer of bubble wrap, you might just need more time. You might need more, more kind of support to get you through so that you then gently move into more preemptive rest for your next activity, because that's the whole goal is is not necessarily to stop your activities, but to really plan out which activity is going to be the right one for your body for this particular time. And and you know, after, if you've just taken a shower, you're probably not going to choose the next activity to be a physical exertion. You need to then choose something that's going to be from a different bucket so you're not triggering that same symptom pool. So moving through through more of a pre-planned schedule of your, your activities, yeah, and it's.

Jackie Baxter: 39:53

It's coming back to. You know, it's very individual. What is it that works for this individual person and sometimes this individual person in this individual circumstance? You know, I think you know I'm a big fan of lists. I love my lists, you know, and for me, one of the most useful things that I do was you know, when I'm feeling like this, when I'm in this nervous system state, what are the things that help me. So, if I'm feeling very fight flight, if I'm feeling very activated, what is it that can kind of bring that down? You know, and I had boom, boom, boom, boom, boom.

Jackie Baxter: 40:28

You know a number of strategies and you know, sometimes I would go straight for one and sometimes I would feel more like another. And when I'm feeling really kind of shut down, you know, what is it that works then? And they're not going to be the same strategies, you know, and this is a lot of what I teach in breathing is that you know the breathing exercises that are going to work when you're activated are probably not the same breathing exercises that are going to work when you're shut down, you know, or if you're actually feeling quite regulated, what are the ones that are going to keep you there, and it sounds like you know whether it's breathing strategies or whether it's other strategies. You know it's the same kind of working it out what is it that really works for you and how can you tell that it's working as well? You know, I think that's a big thing. You know, how do you actually know? And getting the biggest bang for your buck, because you don't want to waste your time on strategies that aren't helping. You want to find the ones that really are. So, yeah, that's really, really useful and I think you know, yeah, you know also, as you say, it's a movable feast. You know, things change and being open to the fact that, actually, that thing that didn't work before it may work in the future. So, keeping it kind of on the later shelf, maybe. So, yeah, I think that's super, super powerful.

Jackie Baxter: 41:47

Now we talk a lot about taking stuff out, um, doing less, reducing, you know, and this, this is all important. You know, I think you know that certainly was, for me, the thing that I needed to do first. I needed to do less and less and less, and I didn't do enough less, which is why things kept getting worse to start with, and I think, again, a lot of us have made that mistake because, well, why wouldn't we? But you know, we get to this point where maybe things are a little bit more stable, we've got a lot of good strategies in place, we're getting really good at our pacing and maybe we're at a point where we might be able to increase our capacity a little bit. But we have to be so careful about this, you know, and not in a graded exercise therapy kind of prescribed sort of way. So what, what would you sort of look at in terms of increasing activity? How would you kind of gently ease someone into that?

Amy Mooney: 42:48

It's. That's what I think. If you are going through your aggressive rest time and not taking it, it's not last. You don't have to be in that state as long. That's showing that you are doing things very well supported. That's showing that you are doing things very well supported. So that activity, the shower, was done.

Amy Mooney: 43:14

Well, you did things with modifying and making accommodations to that activity so that you didn't need to rest as long. Your recuperation period did not last three days, but maybe it was two days and it wasn't as intense. That's what you start to judge, like, okay, I got through that and it wasn't as deep, it wasn't as aggressively resting or it wasn't necessary to as aggressively rest, wasn't necessary to as aggressively rest. Now I can make my next choice after two days to another activity. And that's where I think, like that shortening of the window by its natural development is how you see that you are getting closer to really moving into a kind of a bigger activity or a more involved activity over time. And so what you do is you do the next activity. You know if it's a cognitive activity, maybe you watch a show or you, you know, open a book and start seeing what your symptoms are feeling like and start seeing what your symptoms are feeling like. You know, maybe with cognitive activity and reading text, you know what are the symptoms. Is it that your brain fog, your processing, you're having more difficulty with understanding what the topic of that paragraph was? That's completely different than what it would be for if you were showering. So you're kind of you know, kind of dipping your toes into that type of activity and then seeing how well your body recovers from that and just kind of playing with those boundaries a little bit more. You know, if it comes down to it like you've been able to tolerate taking a shower and doing some cognitive kind of activities, can I walk around the block and where does my body feel at that point? Can I go with an incline? Can I add a little bit more physical exertion to my day? How does my sleep behave? You know, how does my, how does my digestion work? How does, how does the whole system around it now respond from that small increase and just kind of playing with it and feel with. You know, stay, stay with that feeling for a little while and it's you know, it's really hard where.

Amy Mooney: 45:44

You know, sometimes people will feel like they've gotten through their activities, their basic ADLs, their self-care, their home things. You know they're tired of just living within the walls of their house. They want to go out and maybe go for a walk or maybe go to a store and just try community living. They need to still do it within boundaries of what is my time. How much can I tolerate that stimulation of being at a store? I'm in a scooter. That should cut down on my physical exertion, but now there's still a lot of sensory that's maybe not accommodated for, or motion because you were in the car and your body is being jostled around. Those things all count to exertion. So I think you know, by grading or kind of increasing, your day-to-day living still needs to really account for all of the other factors that still really go around those specific events.

Amy Mooney: 47:01

Also, you know, another piece of it is that you know it's the delayed response of PEM. So be sure, if you choose to do an outing to a store you now need to give yourself a really large window after the fact. This is beyond your normal baseline activity. Give it time to respond because it might come even later. You know many people will tell me that it's truly like three days that they feel PEM that they've kind of been able to live with their day-to-day basic self-care. But as soon as they go out to a doctor's appointment, it's three days later that they feel that exertion. They're already back to taking a shower or thinking that they've been able to get by from that delayed experience, and wham, it hits them three days later. So that's where, keeping it still in perspective that you can start testing your boundary ever so slightly, but you still now need to give it that even longer delayed response, just so you know what that exertion effect was on your body.

Jackie Baxter: 48:16

Yeah, and it's not sort of diving in and going oh, I felt okay, doing that, therefore I'm going to start doing all of the things, which is, again, very common. And you know anyone who has done that and experienced that, where they've done one thing and thought it was fine and then, you know, decided to do a couple of other things and, you know, then got absolutely slammed, you know, two or three days later. You know it's a very natural reaction. You know that list of things we want to do is piling up and up and up, know, as we're unwell.

Jackie Baxter: 48:45

So, you know, I think, being gentle with ourselves if that is something that that you have done and I put my hand up and said that I did that plenty of times, you know, got far too excited, far too quickly, um, but um, you know the sort of the recriminations after that. It's like, why was I so stupid? Well, because I wanted to engage in life, um, you know, which is a very natural reaction. But okay, let's, let's take it back. And I think you know what you were saying about the sort of the baby steps, you know, without being afraid to test the water, but doing it one tool at a time, kind of thing rather than, you know, diving, diving in too too much and giving ourselves that kind of time and space and and grace with it, really, I guess, isn't it.

Jackie Baxter: 49:30

Yeah, amy, thank you so much. Um, it's been such a pleasure speaking to you and I feel like we could go on all night and and not run out of things to talk about. Um, so, thank you so much. There's been so much here that I think has been really valuable valuable, sorry for people. I will make sure that I put the link to your website and everything into the show notes so if people want to check you out or get in touch with you or watch anything that you've done or any of that, they can do that. And yeah, thank you so much thank you so much.

Amy Mooney: 50:05

Take care, be well, and thank you for this opportunity.