INTRO: Hey, beautiful soul, and welcome to Dear body, I'm Listening. The podcast for women navigating chronic symptoms, invisible illness, and that daily dance between hope and exhaustion. If you've ever been told it's all in your head, well, this podcast is for you, because your body is not lying, and neither are you.
Hi, I'm Donna Piper, movement therapist, Pilates instructor and chronic illness navigator. After years of being dismissed, misdiagnosed and doing everything, quote, unquote right, but still getting sicker, I created this space to tell our truth. Here, we talk about swelling, brain fog, nervous system crashes, and the kind of symptoms that don't always show up on lab results. We're going to explore lymph, breath, movement, self trust, latest research books, relationships, basically everything, all from a place of compassion and honesty. This isn't about fixing your body. It's about finally being heard and getting some answers.
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Donna Piper: Hey, beautiful soul, welcome back to Dear body, I'm Listening. Today, we are tackling one of the hardest lessons I had to learn in chronic illness life, pacing, or as I like to call it, how not to spend all your energy in one target run. If you've ever had that one good day, you woke up feeling almost human again, and you decide to clean the kitchen, fold six loads of laundry, answer your backlog of texts, or even maybe go for a walk, only to find yourself flat lined in bed for three days after, welcome to the boom bust cycle. And here is the thing, it's not your fault. You've been conditioned your whole life to believe that energy is endless, which there is a chemistry, scientific component to that. But it is not all about productivity equaling your worth, and that rest is lazy. Your body is operating on a whole different economy. When you have any of these invisible illnesses, chronic fatigue, pots, hypermobility, EDS, hypermobility spectrum disorder, and even lipedema, there's so much pain. Or even if you have chronic pain, there's fibromyalgia, there's so many different levels and illnesses, that when your body is constantly stressed and fatigued, the idea is to maybe push through it. But with our bodies, we have to do something different. And if you don't learn to budget, the bank will close on you.
So today, we're going to unpack why pacing is about safety, not slacking. How your nervous system interprets boom bust as danger, and some real life strategies. I used to keep myself out of flare jail. So let's get into the real talk segment of our podcast today, and let's be real. I used to suck at pacing. And sometimes, I still do, and still haven't got it on lockdown. When I had a little energy, I treated it like a sale at Nordstrom track. Oh, my god, grab everything. Do everything before it's gone. And then my body would pull the rug out, and I'd be angry at myself. Why can't I handle this? Other people are able to work full days. Why can't I? Other people can clean their whole house, do so many different things. I was used to doing a ton of different things and being very physical, and I no longer could do it. I just didn't understand. I felt like if I woke up with a lot of energy, I was going to have energy for days. I would slide back into not feeling like I didn't have energy. I couldn't even take a shower.
But the truth is, all I was doing was having an inner dialog, a shame spiral. And this was worse than the flare itself. Because instead of resting, I would spend my recovery days blaming myself. And here's the truth I wish I had learned a lot sooner. Energy isn't a gift card you have to use up in one go. It's a budget. When you are dealing with an invisible illness, you have a budget. Some days, you've got 100 bucks. And some days, you've got 20. And some days, you're an overdraft. I realized that I had a choice to spend smarter or keep going broke. I had to learn this lesson the hard way in Pilates class. Before chronic fatigue and everything kind of imploded on me, I could power through any workout. Honestly, I thrived on it. I thrived on that feeling of being the strong one pushing through, and I also thrived on being the good student after the chronic fatigue hit at this level with all my other conditions that I actually knew now that my body was screaming at me to take care of everything changed.
I would go to class feeling amazing during, and I would do the exercises and push through, and they didn't feel like I couldn't do them. I'd get a little bit of an endorphin high thinking that after this, I'm going to feel like I always do absolutely amazing. And the more classes I would take, the more I would feel better like I used to prior to all my conditions. But the truth is, I just got tired. I get so wiped out. And then for days, I was wiped out and couldn't understand what was going on. This isn't how my body usually responds to doing Pilates. But now, I was my norm. So at first I was like, oh, well, maybe I'll just continue. Maybe I'm not conditioned enough. Maybe let's keep going and going. Actually, I was stressing myself so I was getting more susceptible to being sick. Then I thought, okay, I really need to switch my mindset that it wasn't about being disciplined enough or pushing through. I was really being told by my body, hey, hold up, lady. It was something I didn't really want to hear, and not until I got officially diagnosed that did it all click and make sense.
With chronic fatigue and having to do half of what I could do, perceived exertion and all these things that just didn't make sense to my brain and how I'd operate, but also in my foggy chronic fatigue brain either. So what finally clicked when I went to class was realizing that, even if I could technically do the exercise in the moment, that didn't mean I should. And I had been preaching that to my clients for 25 years since I've been teaching, but I've never had to personally enact that sentiment. And then I also had to start skipping movements that I knew weren't supported for me. They'd be fine now, but I would pay for it later. And I would also have to cut my reps in half, do different modifications. And maybe even the hardest thing, giving my body and myself permission to rest in a room full of people still going, pushing through it. And let me tell you that it is brutal when I go to classes and I can't do these exercises. I know movement is good for me, and even showing up and doing some movement, and I have always preached that. But it's been really a hard shift.
There's also some unspoken social pressure in a class setting, not everyone is paying attention to you. And if you stop a lot, even if they're really not looking at you, you feel like they are. And it's also an added stressor to a body that's already stressed. And I would get pressure from a teacher to keep up or saying I could do more, or try to give me harder settings or harder things, and it was embarrassing for me to say, no, I can't do that. I shouldn't do that. I don't want to do that. Typically, my Donna self would be like, okay, yeah, yeah. Give me more. Of course, whatever you say. And I really had to change that in the moment for my preservation outside this 50 minute class. And for a while, every time I stopped, and sometimes, like I said, I still do. I feel like I was failing, and everyone can see I wasn't keeping up. But once I learned more about my hypermobility aspect of this, especially because my legs were heavier so I wasn't able to hold my body in position, I was getting more fatigue in exercise, in areas that weren't normal for me where I knew I was strong, I had to look into my hypermobility.
I'd have a nice discussion with the woman that I found, Dr. Melissa. She offers great online courses about hypermobility, the whole spectrum, whether you're hyper mobile or you have been diagnosed officially with EDS, and that really helped also to give me permission. It was a nice validation of how I was thinking about what I need to do with my body. But because of her program and how she broke it down, it also gave me permission to say, yes. Your body needs this, not what you're being asked to do in these other classes. So honoring that. It finally clicked that I'm a little hard headed, but pushing through was costing me way more than just sore muscles. It was costing me days of my life because I would flare up and burn out, and then I would push, and then it would go longer and longer. And that shift, learning to listen instead of pushing is what gave me back a sense of control and also feeling confident. And it wasn't because I was lazy or tired, it was because it's actually healing me to do this. And just having that in the back of my head empowered me more to stop exercises in the moment, or say, no, when I was offered to do a harder class. Because even though it looks like I'm able to do these things externally, internally, there's a whole other thing going on, and it's also what has inspired me to create my own Pilates.
I teach classical Pilates, and I love it. But also cueing and a different pace for women with lymphedema that have heavier legs. When your legs are heavy, it's hard to lift one up, let alone do the whole thing. If you're listening to lymphedema, or if you're listening to me and you have lipedema, or even if you have heavier legs, it's not even a strength thing. There's so much volume. It's very difficult. Your mobility changes, so it makes it more difficult. Same with chronic fatigue. Moving is a positive. You want to move, but how to figure out how much and what exercises benefit. So that's why I'm really gearing my whole Pilates career in teaching to not that you do less, but you do it, and it's cute in a different way where there's more space to honor your body because I really think women need more space. Modifying isn't shameful, pacing isn't optional, and rest is built into the program, not treated like a weakness. Space in between is what actually is going to heal you, not just the exertion and the exercise itself.
So let's get into the little truth serum education part of the program, which I like to call, let's get lymphatic, and let's break down the sciency side. Your body has two main gears in your central nervous system, which is sympathetic, which is fight or flight. And parasympathetic, which is rest and digest. And every time you push hard, crash, then push again, your nervous system reads it like an emergency siren. She's in danger, mobilizing the troops, histamine spikes, cortisol spikes, inflammation rises. That's what the body does in order to deal with threats. It gets inflamed. Everything's on board. But when you have these invisible illnesses, you're like your car. If anyone is old enough out there that's listening to manual transitions, it's like your gear is stuck in first. It keeps going and going, but there's no shifting into second gears to get to your engine where it's running smoothly. It's always first. It's always ready to go. And that in of itself, taxes the rest of your systems and your processes of like, because as Dr, Perry from Stop Chasing Pain always says, which is so true, which is why I think I was attracted to his method of teaching instantly is, no system get sick alone, and no system heals alone. And that's exactly what you're doing when you're constantly just having your body. And a lot of it is not even you're doing, your body is reacting. Your body doesn't feel good. There's things going on. So it's trying to help, so it's sending out all of these healing mechanisms. But actually, when they get chronic, they start to go to the other side, right? So they're not helping you anymore. They're actually adding on to the bucket that's already full and just kind of continuing the cycle.
And for those of us with lipedema, MCAS, POTS, chronic fatigue, hypermobility, EDS, the whole spectrum of hypermobility, and other visible illnesses, our bodies don't reset easily. Instead of bouncing back after a push, our systems stay stuck in high alert. That means more swelling, more fatigue, more pain. So pacing is essentially a nervous system rehab. It tells your cells that you're safe. You don't have to sprint and collapse. We can move into rhythms that are sustainable. And that's definitely a mindset shift that your body already knows, and that's why it's putting you in these situations to personally make you do this. But once you get aware of it, you change your mindset around things. And it's a process. It's not something like, oh, I'm gonna pace, and it's easy. That's a joke, really. But it's really about, now, you're doing your own training, mentally and emotionally to provide your body what it needs. So think of it like interval training. But for healing, you build rest into the rhythm so your system learns a new baseline over time, your capacity actually grows because you're not constantly throwing yourself into flare land.
The pattern isn't about discipline or weakness. It's called Post-Exertional Malaise. Now, it took me a while to even really be like, what are they talking about? I don't really even understand that term. It's talked about a lot in chronic fatigue, so ME/CFS, also fibromyalgia. It does come up with hypermobility and POTS, and even long covid. And lipedema talks about more of it. With lipedema, it's harder to actually move, and so it fatigues you more. So it's a little bit different, but it does come up. Through all of those, it means symptoms get worse after activity. Sometimes, not right away, but hours or even days later. So for lipedema, it's more like standing. Sometimes, it's just really hard to stand. If you have to stand, then it gets worse. So it's a little bit different for each one. But basically, you really want to look at how much you're exerting and then track, okay, I did X. How do I feel for the next two to three days? Because sometimes, this stuff doesn't come up right away. You feel great. You'll do it again. You feel great. And then the thing you did three days ago, it's what's affecting you right now, and that's what really makes it so hard. You do feel fine in the moment, but you might be borrowing against tomorrow.
I have lived in that kind of overdraft cycle for the last several years. Really, the last six years since I got a viral pneumonia, before all the covid stuff, and then that propelled everything and all of these symptoms that I didn't really know. I always knew I had, but didn't know that was affecting me, or was a thing you could treat has gotten worse. So I've really had to kind of dial back everything, especially since January when I learned that I had chronic fatigue. That's really when pacing and all of these things kind of started to come into focus for me. And also this spring, a few months later. So I got diagnosed in January. In April, I found an app called Visible. It's a band you wear on your arm, and it's all backed by science. I have tons of different research, so it's a great resource anyway to learn about the latest research that's going on for anything in the chronic fatigue and related syndromes that are out there. And it has a lot of high accuracy because it moves more. It's actually designed to learn how to rest and to pace yourself, and it gives you lots of different biometrics and things that I don't really use.
I basically check in the morning and see what my stability score is. And if that aligns with actually how my perceived energy is, which a lot of times it is totally different. And then also it helps me pace. So it gives you points based on all of your symptoms, and you know this algorithm, and you try to hit into that pace. But the good thing for me wearing it, it showed me a lot of things that I thought were really taxing my energy, were hugely taxing my energy. So then I know where to put them throughout my day. It'll give you alerts, and it'll recommend that you rest. So think of it as a pacing partner on your arm that says, girl, stop before you crash. Or you're gonna pay for this in a few days. And some days, life isn't just not practical. I need to do stuff. I have a time limit. I have to do it. I may go way over my pace points, but then I tried to reconcile that with taking it easy the next day, or seeing how I could readjust these pace points, if it was something I didn't really realize that was killing my energy.
I'm not familiar at all, but I've heard the term tossed around spoons like, how many spoons for the day? I really need to read all that information and those books. I'm sure it's wonderful, but I haven't read it. I don't really talk in these kinds of terms. Visible and their app talk about an energy envelope. So it's kind of the same thing that's like, you want to just be in a range where you can function without tipping into a flare. And for all of us, that isn't obvious. And because PEM symptoms are delayed, you don't know if you've gone too far until you've already spiraled. And that's where the band in the app is brilliant. I do have a link. I'll put it in the bio. You could save $20, but I also get $20. If you're not into that kind of thing, just go to their website and buy it straight from them. But if you want to save $20, there's also that link that I'll put in the notes. So it's really been a very helpful tool.
I've spent tons of money on different gadgets, and it's actually something I use every day. I've really gotten used to kind of figuring it, helping me figure out what I need, and really what PEM is and the severity, and how to improve the outcomes by tracking this exertion in real time. Because I don't know about you, but with everything going on with all my different symptoms, it's hard to tweeze them all out. Also with the brain fog and everything else that goes on, I just can't. It's just overwhelming to try when I was trying to figure it out before I got this. And I can look at my app, and if it's a good day and I do have a Pilates class, and I do have laundry, or I have to go to Costco or whatever, I can kind of say, okay, so today, I can do laundry and Pilates. And then tomorrow, I can't do laundry, Pilates or Costco, or any of them. And then if I do know, I've pushed myself, and then I end up having a flare for a few days. I know where it's from. It's not just like it's out of the blue, or just woke up feeling like that. I can track and be like, oh, I went over my pace points for two weeks straight. So of course, I'm gonna have this week of really feeling awful.
So how can I get back on track? So that's gonna lead me into our myth buster moment of the week. And I think this is a big one, so let's really just blow this myth right out of the water. And if you just push through, you'll build stamina. Well, that might work for marathon runners. And when I did run marathon runners, and I was learning to run, yes, it did mentally. You do need that, right? But when you've got a connective tissue disorder, autoimmune issues and chronic fatigue, all of them, pushing through just digs you into a deeper hole. The truth is, rest is part of the training. Saying NO is a part of the workout. And stopping early before the crash is the bravest thing you can do, because here's the rebellious truth. So if your rebels out there is to rest, to put yourself first to say NO, we don't get badges for suffering, right?
No one's handing out a gold star for the most depleted woman in the room. So let's just stop that right now and ask for help. And if you're like me and you don't like to have someone to help you, and you really would like to do this all on your own and build your energy up again, then rest now, rest every day, build that in. And then when you start to feel better, the rest is the healing aspect, then you could start going back to your day. But the more you push through, you're just delaying and delayed. I know that's true for myself. All the research and all the things I understand now that I had no idea before, because I really thought I'm going to build that stamina muscle by doing more, but my body is not in the space anymore. It probably never was. And if I learned this years ago, I might have helped myself a little bit more. But I'm 54 now. What's done is done. And now, I'm just having to relearn.
So with that, let's go into our Feel Good Flow, and let's try a little pacing practice right now. Close your eyes if you can, if you're driving or anything, obviously don't. But when you can, just place one hand on your heart, and the other hand on your belly, take a slow, deep breath in through your nose. And as you exhale, ask yourself, what's the one thing I can do today without overdrafting my body? It might be a shower, it might be sending one email, it might be literally just moving from the bed to the couch. And that's enough. So give yourself the one thing you can do without putting your body into a flare and accept, okay, that's enough. That's the one thing. That's what I can do today, and I'm good. And now, imagine your energy is like a jar of marbles. If you are into the spoon theory, you could do spoons or whatever you like in order to visualize this. And so every task, take some marbles out instead of dumping your whole jar by noon, what if you sprinkle them throughout the day, or even leave a few in the jar for tomorrow? And that's pacing. That's partnership. That's saying, I belong in this body as it is today. And really coming to terms with that has really helped me. So just little things like this.
I also have created a notepad that I'll show in my Instagram account where I kind of brain dump everything that I have out that I need to do or want to do, and then I just select, I think, five things, five or six things. And then I cut that in half and be like, okay, what do I need? What are my top three? And then at the end of the day, how many I've done? And then I have a companion piece to that where I write about how I feel about it, because it's also a lot about how we feel about how much we do, too. That shame spiral I talked about in the beginning, feeling guilty about this, that really is a major piece of this that we need to shift in order to really get the most out of when we rest. So we're actually resting, not stopping because we have to, and then feeling bad about it.
So if you've been stuck in the boom bust cycle, let this be your permission to slip. You're not lazy, you're not weak, you're not broken. You're simply learning a new rhythm, one that will actually sustain you. And if you want extra support, check out the Visible band, either on its own. It has an app with it, or click on the link that I have that's a referral link from me. Because this is not sponsored. I'm not getting anything from the company. This is just what has really helped me since April. And because sometimes data is the nudge you need to honor what your body has been trying to say all along, and it's just me trying to visualize all the energy I'm going to put out and then do half. This wasn't really working.
And here's the bigger vision. This is actually why I'm creating Pilates for lipedema and chronic fatigue, because women like us need a symptom where pacing is built in. Modifications are celebrated. Mind movement is medicine, not punishment. I've spent my adult life and lots of money, getting lots of degrees, doing things to really talk about how movement is medicine. So this is, let's say, the universe, and all of my issues pushing me. This is where I would like to help women out and have them learn about their bodies that's going to be coming very soon. And again, chronic illness is lots and lots of money, so it's really a nominal fee. It's like $10 a month to be in these classes and get support. Obviously, right now, it's virtual, so look out for that.
If today's episode hit home, send it to a friend who's been having a good day rushing herself into a flare. And don't forget to follow me at the Donna Piper for more ways to move, heal and belong in a body that deserves compassion. Until next time. Remember, rest isn't quitting. It's healing. It's healing. It's healing. And sometimes, the bravest thing you could do is stop before you crash.
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OUTRO: If this episode made you feel even more seen, brought you clarity or reminded you that you're not alone, please take a moment to rate, review and send it to someone who needs that same reminder. You can find more tools, blog posts and support over at donnapiper.com. And hey, don't forget to subscribe so you never miss an episode. Got a question for me? Every month, I do a listener coaching episode, and I'd love to hear from you. Send your questions, stories or flare up confessions to [email protected], and you just might hear your answer on the show. Until next time, Dear Body, I'm Listening. I am so glad that you are here.
