S2 E1: Charting our Trek Through Autoimmune and Chronic Illness
- autoimmunesisterho
- Jun 3
- 28 min read
Alysia Thomas: Hello friends! We are so excited to have you join us for a second season of Autoimmune Adventures, and our very first video episode. So welcome old friends and new.
Becky Miller: I'm Becky and as always, I'm joined here with my sisters Stacy and Alysia and we're here to remind you that you are not alone in your chronic illness journey.
Stacy Griffin: Whether you're newly diagnosed or a seasoned pro navigating life with chronic or autoimmune disease, this space is for you. We're here to offer you knowledge, some encouragement, and support every step of the way.
Alysia Thomas: So, we're going to share with you a little bit about our personal journeys and some hard-earned wisdom. We're also going to give you some tips that are going to help you with your own autoimmune journey. Just help it be a little bit easier. But first, we want to do some introductions.
Stacy Griffin: Hi, I'm Stacy and I'm married to my wonderful husband Doug, and we've been married for about 20 years. He is a history-loving, French-speaking guy who even sings Queen's greatest hits in Kermit the Frog's Voice. We have two beautiful fur babies, Leason, who is a sassy mini schnauzer, and Romeo, who is a sweet but very stubborn pug. I've spent years teaching at both the university and middle school levels. And now I coach teens and adults how to manage stress and thrive in their school and work lives. I love to travel. I enjoy talking with people and connecting with them. And I'm very, very happy to have you here. So, welcome to our journey.
Becky Miller: I'm Becky, the middle sister. I've been married to my best friend for over 15 years. Scott has been with me for most of my autoimmune journey, and in our marriage, I gained three amazing bonus kids. They're all young adults now. one of them lives away from home. The other two live with us as they're finishing school and working, and they're all out there living lives and making us proud. We live on our little piece of heaven, which is a small hobby farm in North Texas. We have chickens, pigs, ducks, dogs, cats, and bees. And for those of you that even are familiar with what they are, we have guinea foul that we love. They're our resident pest control. And we get incredible sunsets out here. Sunrises are great, and this time of year, we have the most beautiful wild flowers all over our fields. And it's just a place that I love.
The Texas summers are a little bit hot and hard when you have lupus but it's still the place that I love to be. I love to travel, read, and write, and I am passionate about helping people understand that their chronic illnesses do not define who they are.
Alysia Thomas: Hi guys, I'm Alysia. I am the youngest of the three of us sisters, and I live in Minnesota. I am a busy mom of five children aging 13 up to 23. our oldest is getting married this summer, and my husband and I are celebrating 25 years of marriage this summer. So exciting, exciting year for us. I love to cook gluten-free food. I love to find fun places where I can eat free food and I don't have to cook it. But I do like to share it as well with people I love. I'm passionate about it. And my sisters and I, I think between the three of us, we have a good recipe for almost anything you might want, I think
I also have an commerce business that I run out of my home. It is a family affair. My kids work there. My husband pitches within me and it's something we are all doing together, which is kind of fun. And while I don't let my autoimmune diseases define me, I know that it is extremely important to have a strong support system. My sisters and I are very blessed to have each other and to have good spouses and a good family. But we know not everybody else has that and that is why we are doing what we are doing. So whether you have a support system, or you need a support system, you're in the right place, and we are so happy to have you here with us.
Stacy Griffin: So, now that you know a little bit about us, let's explain what Autoimmune Adventures is all about. Being diagnosed with an autoimmune disease can feel like being dropped at the foot of a really large mountain, and you're told, "Okay, here's your diagnosis." And so, you have to start climbing this mountain. You didn't plan for this. You don't have a map. You really have no idea what obstacles are ahead of you. And the trail feels very unclear. The terrain is unpredictable. The journey feels overwhelming. But here's the reality, the mountain isn't going anywhere. And there's no way back to the life that you had before. And the only option that you have is to move forward.
So we have good news and bad news. Let's get the bad news out of the way first. This journey is never ending. There is really no destination. You will always be trekking along the path and learning and adjusting as you go. But we have some good news, too. You can totally do this. You do not have to do it alone. We're here to take on this climb together, to navigate the challenges, to find those moments of beauty along the way, and embrace the journey as an unexpected adventure.
Becky Miller: That's right. And for those of you who've gone hiking, you'll know what I'm saying when I say let's get a backpack together. For those of you who have not gone hiking, just imagine, what you've seen on movies or whatever. It's the same thing. We're all packing a backpack, because we're going hiking. When we're going on our autoimmune journey, just like a hike, we should start with a good backpack and good supplies. And so, you wouldn't set off without food, water, or the right clothing, or a good pair of hiking boots if you were taking a hike up a really huge mountain. This same idea kind of goes for navigating your chronic illness. You need to pack your proverbial backpack with knowledge and tools to help you along the way.
And this means first understanding your diagnosis, learning how to fuel your body, finding doctors who will listen to you, gathering a support system that truly gets it, and we'll talk about a few more that are really kind of key components that are other important proverbial things to have in your backpack.
You won't have all the answers right away and sometimes you will realize that you might be missing something important, but with time and experience, you'll learn what works specifically for you because no two hikes are exactly the same.
Alysia Thomas: Exactly. No two hikes are the same, but you still don't want to go on the hike alone. So, between the three of us, we have 10 different autoimmune conditions and counting, I believe. And trust us, we know what it feels like to feel unprepared for this kind of a journey. And we can tell you because of our 50 plus combined years of experience that some days the trail is going to feel pretty smooth and you're going to feel like you are strong enough to do it, and you get through and it's fine. And then other days it's going to be rocky, and it's going to be steep, and you're going to be exhausted, and you're going to kind of wonder if you can even take another step and keep going.
The key here is learning to listen to your own body, right? You've got to learn that it is okay to adjust your speed when you need to and that even when that climb does feel impossible, any amount of progress is still progress, right? So no matter how slow it is you're going, it still counts.
Alysia Thomas: Your effort still counts here. So the journey is not going to look the same for everybody as we've mentioned, but the important thing is to keep moving forward. Just like Dory, "Just keep swimming," right? You just got to keep going. And while this might not be the adventure that you expected for your life, you are capable, you are strong, you are not climbing alone. You can totally do this.
Stacy Griffin: You need to remember that no matter what autoimmune disease you're facing, there are six game-changing principles that can help you navigate the unpredictable adventure that we call autoimmunity or chronic disease. And we call those things the Big Six. These are our foundations that have kept us moving even on our toughest days.
Now, before we dive in, let's be clear. There is no magic cure for autoimmune disease. And while we cannot control everything, we can take steps to manage our symptoms to support our bodies and improve our quality of life so that we can live beautiful, wonderful lives.
Becky Miller: That's right, guys. I think all of us that have autoimmune diseases, especially when we're first diagnosed, sometimes we feel that loss of control - control over losing a life that we wanted and that we no longer have and all of those tough feelings, and that feeling like we don't have control over how our body is reacting, what our disease is doing. This is actually where those Big Six come in. We don't have control over the fact that we have these diseases. However, the Big Six are things that we can do. they are an element that we personally can have control of. They aren't quick fixes, but when they're used together, they can make a real difference in how you feel on a day-to-day basis.
Becky Miller: And guys, I hate to say it, they do take a little bit of work. Everything that's good takes a little bit of work. And I know that's hard because trust me, we all know when you have a bad day, you just feel like staying in bed all day sometimes and it's hard. But if you make a little bit of effort and it doesn't have to be a huge effort every day - every little bit helps - it will help you feel a little bit better day-to-day. Think of them as tools in your autoimmune backpack, things that you can lean on to help you navigate those ups and downs of your autoimmune journey.
Alysia Thomas: Absolutely. And because everybody's journey is different, what works for one person may not work for another person. however, these six principles, they're backed by science, they're backed by research, and they have helped all of us and every person I have ever spoken to who has put them into practice. and they're very easy to personalize and to individualize to you and your lifestyle. So, don't just put them into practice because we say so. You should do your own research. Do your homework. Talk to your doctor about it and find out if these six principles can help you on your journey.
Alysia Thomas: They will. You'll find that they can. Just gonna give you a fair warning. We encourage you to do your homework. But yeah, so the first is Growth Mindset and a Sense of Humor. Second is a Healthy Diet with minimal rocessed foods. Third is Detoxing Your Body and Supporting Your Liver and Your Kidneys. Fourth is Gentle Movement. If you are not a fan of exercise like none of us really are but we know that gentle movement is extremely important. Fifth is Quality Sleep and Rest when you need it. And last, but definitely not least, is going to be Stress Management and Having a Strong Support System.
Stacy Griffin: We like to think of our Big Six as the true north on a compass. It guides us on our healing journey. Just like a compass points us in the right direction when we're lost or uncertain, the Big Six, we are using them as our guiding principles to help us navigate the unpredictable terrain of autoimmune and chronic illness. When we align our actions with these six key factors that were mentioned by Alysia, we create a path toward healing that's true to what our body needs because we figure out how these work in our own lives on personal level. And when we feel maybe a little lost or off course, we always know that we can return to those and keep our compass pointed toward those Big Six, and it keeps us on track.
It moves us toward better health and And even if the road gets rocky, which it does sometimes, these principles are our north star. And they provide direction and clarity and stability in a very difficult journey that can feel very overwhelming sometimes.
Becky Miller: That's true. So,the first of our Big Six is Growth Mindset and a Sense of Humor I love, because it is something that everyone can do. And you might not think that you have a sense of humor, but believe it or not, that's actually something you can learn. And let's face it, I think we can all say that sometimes maybe your sense of humor when you have chronic illness can get a little bit dark sometimes. But being able to laugh, even having a dark sense of humor is important and helps you get through the day a little easier.
Becky Miller: If you think about it from the climbing the mountain mindset, every mountain climber knows that they have to have their head in the right space. They have to approach the journey knowing that they're, going to go forward. They're going to move forward and try and reach their goal. And everybody's goal is different. For some of us, our goal is going to be just making it through the day. if you have to shower, I know that's a big tough one sometimes for people. Whatever it is, make your little goals along the way and put your mindset positively that you're going to be able to do that and then move on to the next thing.
If you approach your journey convinced that you're going to fail, every step is going to feel heavier and the climb is going to seem impossible. And the same is true for autoimmune diseasse. A Growth Mindset and a Sense of Humor don't erase your struggles, but they make the climb so much more bearable. There will be tough days when your climb is extra steep, and you struggle to find your footholds, but choosing to focus on moving forward rather than obsessing over obstacles, really can make all the difference. Just like experienced hikers encourage each other as they climb, we have to find light in our dark moments and remind ourselves that every step forward, no matter how small it is, is a victory. And we need to celebrate them.
Alysia Thomas: Yep. Number two is Healthy Diet. And we refer to that fuel for your journey, No climber is going to start a climb up a mountain without the proper fuel to get them there. So, you wouldn't pack junk food and then expect to have good endurance for a climb like that. Our bodies work the same way, right? what we eat directly impacts our stamina, our energy levels, our strength and our overall ability to function because you've got to have a sharp mind as well. And your diet impacts that as well. So processed foods, inflammatory ingredients, those low quality fuels, they're going to actually make our journey harder. They're going to make our body work harder.
Alysia Thomas: And those whole nutrient-rich foods, those are the ones that are going to give us energy. They're the ones that are going to keep us going on the journey. So, learning to eat well is not about perfection because none of us eat perfectly, and it's probably, of the Big Six, it's probably the one I struggle with the most. However, it's choosing when we choose what we eat, it's choosing the fuel that we're putting into our bodies. So if we make ourselves mindful of that, thinking of it as fuel, it would be easier for us to choose the things that are going to help us that are going to give us that good energy to navigate the challenges. Not just that we're having today, not, mean you got to think about when you eat something whether it will help you today, but you have to think about it in the long run as well because you've got the whole rest of your life ahead of you. And if you create patterns of unhealthy eating, that's going to affect you for the rest of your life, not just today, and your energy levels today. The same thing for a good healthy diet. It's going to extend your life. It's going to make you have a higher quality of life. And it can help your symptoms as well. It's a hugely important one. And I'm just going to tell you guys, gluten is not your friend. Do your own research.
Stacy Griffin: Number three is Detoxing and Supporting Your Liver and Kidneys. We think of this as lightening our load. I want you to imagine you're climbing a mountain. You're carrying a really heavy backpack. It's filled with a bunch of things you don't need. Why would you do that to yourself? Why would you load up on rocks and broken gear and unnecessary weight? But that's what we do when we don't get rid of the toxins in our lives.
Stacy Griffin: So, when we have anyone with autoimmune disease or a chronic illness, we already have stress on our systems constantly. And when our liver and kidneys are overburdened with all of the different toxins that are out there, it's like we're hiking with a lot of extra weight. So, we need to learn how to detox. And one of the easiest ways we can do that is to simply hydrate. Most people are in a chronic state of dehydration. So, drink more water. Eat cleanly. Reduce your environmental toxins. Go out of the way to find laundry detergents and shampoos and things of that nature that aren't filled with a bunch of nasty stuff that's going to affect you and make you feel bad.
There's so much here. We can't really get into all of it right now, but this is what I want you to think of. Every time you get rid of one of those negative things, that's like taking a rock out of that backpack, It's what we want to accomplish. The lighter our load is, the easier the climb will be. And if we support our detox pathways by giving our body a better chance to function efficiently, then our journey will be smoother. And that's our ultimate goal is to smooth that journey out a little little and make it a little easier for us to be operational.
Becky Miller: Fourth is Gentle Movement.
Becky Miller: I'm telling you right now, guys, you probably have heard it so many times that yoga is going to solve all your problems or that I mean, we joke around about it for those of us with chronic illness, but really, how many times do people say, "Have you tried yoga?" The funny thing is that yoga adapted to chronic illness can actually be very helpful. It is considered gentle movement. I'll be honest, guys. I cannot, and this is not an exaggeration, I physically cannot get up from off the ground without assistance. I've had knee replacements recently. My lupus is bad enough, that's just not something I can do. So, doing yoga is not going to work for me.
However, if you're looking for gentle movement and yoga is something you like, they have lovely things called spoonie yoga online. They have chair yoga and they have options for people like me who there's no way in the world that I'm going to be down on the ground actually doing any poses other than "help me. I've fallen and I can't get up." And so whether it's yoga or walking or whatever, do it at your own pace. I think we get so obsessed with exercise and the idea of these major workouts. And if you're used to exercising and you like to do that and you're okay with it with your chronic illness, wonderful. But the majority of us are really going to have to focus on gentle movement.
Climbing a mountain is not about sprinting to the top. It's about pacing yourself so you don't burn out on the journey. And the same goes for exercise and chronic illness. Pushing too hard can lead you into a flare, but staying still is really not a good option either. Gentle movement, whether it's stretching, walking, or low impact strength training, is like keeping a steady hiking pace. It helps keep the body engaged without exhausting your resources, allowing you to build strength over time without overwhelming your system. The key is consistency and listening to your body so that you can keep moving forward with a sustainable pace.
Alysia Thomas: Ok, then number five, we want to introduce Quality Sleep and Rest. this is we say 'setting up your camp' when you need it, when you've been hiking all day. nobody climbs the whole mountain in one day, And experienced hikers know that they have to set up camp, and they have to allow their bodies to rest and recover before they do that next push. So, sleep and rest work the same way for us. When we don't get the quality sleep that we need, it is like trying to go on a hike without stopping,
Alysia Thomas: And unfortunately for a lot of us with autoimmune issues and chronic illness issues, getting quality sleep can be very difficult. So we will talk about that in an upcoming episode and get into that. But even if it's not sleep, simple rest is also extremely helpful. So we don't want to go, go, go until we collapse, until our body shuts down, so resting when you need to and trying to get quality sleep are going to have an impact on you in the rest of your life.
Alysia Thomas: Just like climbers need to be able to adjust their schedules based on weather conditions or their own personal body conditions, we need to be able to listen, pay attention, and rest when our bodies are telling us to rest. And part of that is going to be learning how to listen to your body. So sometime there's going to be some days where something that you would normally be able to do is going to require more energy of you that day. Why? Nobody really knows, but you have to take that into account when you go throughout the rest of your day, right? So, ignoring that need for rest, it only leads to further exhaustion. It leads to making the climb just really overwhelming. So, sleep and rest. That's number five.
Stacy Griffin: Number six is Stress Management and Having a Strong Support System. So, as we mentioned, it's important to learn to navigate what you're going through with a team and a clear map. No one is going to climb this mountain alone. And if you are climbing it alone, you need to reach out and find people to climb it with. The most skilled climbers always rely on a team or guides and well-marked trails to stay safe.
Stacy Griffin: Stress is like a sudden storm on our mountain and it can throw us off course. It makes our path harder to see and it drains our energy. And that's why stress management and a strong support system are essential for success. Managing stress is like checking your map and adjusting your route to avoid dangerous conditions. while having a support system is more like hiking with experienced climbers who help you find the trail and when things get tough, there's someone there to have your back. And if you surround yourself with people who uplift and encourage you, the climb can become a lot less daunting and it doesn't feel like it's impossible. You feel like it's possible and you can do it. So, if we keep our compass set on the Big Six, if we navigate this autoimmune mountain with clarity, strength, and resilience, the climb can be tough, but by following these simple guiding principles, we make our journey a little easier, and we find a lot of beauty along the way, and we make some friends. It's nice to not be alone.
Becky Miller: It really is. Because really guys, I'm sure that all of us have experienced this on some level or another, but people don't often understand what it's like to live with chronic illness unless they've personally experienced it. Maybe sometimes caregivers or family members or close personal friends might have a pretty good idea, but unless you've really experienced the pain, the frustration, all the things that come with chronic illness, it's really hard for people to understand. So sometimes the isolation can be very real and when symptoms keep us from being social, when everyday activities just feel like they're impossible. or even when people just don't understand, like we said, sometimes the not understanding can be very frustrating. And I said, we've all experienced it. People can say hurtful things and you're already struggling physically and then you're struggling emotionally when you're going through that.
Becky Miller: We've seen firsthand how many people struggle to find the support they need and they do still in that search they're feeling alone and frustrated. And so we also noticed that while there are a lot of great support groups out there, most of them focus on one condition. but the reality is that many chronic illness warriors are managing multiple autoimmune diseases, chronic illnesses, and they're trying to balance them all. And so there's plenty of medical information available if you look online. Often and again I'm sure a lot of you have experienced this. Sometimes it feels overly clinic clinical and sometimes even discouraging when it's giving you your prognosis or whatever. And that's why we want to create a space that's supportive, empowering, and built for the whole autoimmune community for the majority of us that are dealing with more than one thing.
Alysia Thomas: Listen, we get it. We are not here to push toxic positivity on you or to pretend like everything is great and rainbows and roses and puppies because it's just not that way a lot of the days. And some days are just really brutal and some days your body doesn't want to cooperate and sometimes the brain fog is real and the words aren't wording. We can all attest to that here on the podcast. And the people around you, sometimes they...they're not going to understand why you can't do the things that you used to do. But the thing is when we stay stuck in that negativity, it doesn't make it any better. Right? So if anything, it just makes it feel heavier to us. It makes the weight of it all feel heavier. And so we're already suffering. If you've got autoimmune issues and chronic illness, you're already suffering physically.
So, by choosing to just stay in that negative headspace, you're actually choosing to suffer mentally as well as physically. And, like, why would we do that? We don't need that. we've got to be real. We know autoimmune disease sucks. And we're going to be very real and vulnerable on this podcast and we're going to show up some days, bra-less and haven't even brushed our teeth that morning. Who knows? we're going to be real with you guys because we know what it's like. We know what it's like, and we want to be vunerable.
That's why we are here with you. That's why we are doing what we are doing because we know that when you go online and you try to find some kind of a support group sometimes you are met with just a flood of doom and gloom and we don't want to be that way. We do want to be real, but we don't want to be doom and gloom here in this community because the very first thing in our Big Six is to have a growth mindset and a sense of humor. I don't think, I mean the rest of the Big Six are all extremely important, but the one that's really going to change your life is number one. So, none of us ... we're not climbing this mountain by ourselves. It's too damn hard to do it by yourself. So that's why we're here doing this together. We're with you guys.
Stacy Griffin: We all have a favorite therapist. Her name is Brene Brown. And I'm sure many of you have heard of her. And something that she says that has really been a motto and a theme for us is as follows, to quote Brene:
"Daring greatly means the courage to be vulnerable. It means to show up and be seen, to ask for what you need."
Stacy Griffin: Now, please let that sink in. "To ask for what you need." That means that you're speaking up about how you're feeling. You're having hard conversations with people so that they can understand you. You're refusing to struggle in silence and do it alone.
We want to have those tough conversations. And we want to be a support system and remind you that you can climb this mountain and that you're not alone. And even when life is a complete dumpster fire, as it will be on occasion, we still have control over some things like our mindset, our attitude, how we nourish our bodies. And autoimmune disease may take a lot from us, but it doesn't take away all of our choices. And that's where our power lies is in choosing our path and finding our joy in this journey.
Becky Miller: Yeah, we have an example from our childhood that we relate to this a lot when we're talking with each other. But it was a time when we decided to take a family hike up a mountain to find an old mining town that we'd heard about. And we thought it was going to be an easy, exciting adventure, but the trail quickly became steeper and more challenging than we expected. And so we ended up having to take a break. And during this break, we looked around. We saw the forest, the trees, the wildlife, and it renewed us. We were able to get that energy and that desire to move forward to try and reach our goal. Similarly, living with chronic illness can feel like it's an constant uphill battle, and we wonder if we're going to have enough energy to make it through the day.
Becky Miller: Just like our family had to rest and recharge on our hike, when you have autoimmune disease or any kind of chronic illness, pacing yourself and knowing when to push forward is key. As our family continued our adventure, we came to a breathtaking meadow that was surrounded by aspen and pine trees. There was a beautiful stream blowing through it and everything was just magical, honestly. But the sun was very hot and the hike was taking us longer than we expected. We were all tired and sweaty. We were young kids, so I'm sure that we were cranky and our parents were having a great time with us. We were nearly out of resources. We had almost run out of water and so we knew that we were going to have to turn back.
That said, the beauty of that moment when we were in that meadow because it was really just stunning. it was just an undeniable moment of beauty. And when we're on our autoimmune journey, things are never going to be perfect. Our family wasn't able to make it to our original goal of the mining town, but the unexpected adventure that we found was still so amazing that more than 30 years after this hike, our whole family remembers it. It's like a core memory for all of us. And our lives with autoimmunity, they're going to take unexpected turns, and plans and our goals are going to have to change a lot of times because we're just not going to have the resources to go any further.
Becky Miller: But the important thing to remember and this is why it's a core memory but the reason it comes back to us all is because we found joy in a completely different destination than we had originally planned for. and when we have chronic illness, we don't necessarily even have a destination. It's an ongoing journey. But some of the goals that we have in our life have to change. And we have to find beauty and joy in the moments that we have, even if they're different than what we had originally planned.
Alysia Thomas: I love that and I think it is important to note that it is okay to mourn the path that you couldn't take, the path that you were planning on taking, the path that was your life plan, because sometimes that gets turned upside down with a diagnosis and it's really hard having that dropped in your lap and then having to take a different way that you were not planning on. It can be really painful to let go of those plans and the goals that you might have had and be willing to look at things differently, look at them again and start on a different path and on a different journey. And so I think that really speaks to how we can find those moments of beauty even in the midst of hardship like on the hike. Because I don't know that Becky mentioned it but that hike was miserable. It was hot and it was humid and it was sweaty and there were bugs everywhere and it was not a pleasant experience hiking but it was worth it just for the beautiful, beautiful moments and the memories that we made together. So living with autoimmune disease it's going to be tough, and we don't have to let all the difficulties block our ability to see the goodness that is all around us.
Stacy Griffin: So while we're out on our hike, either as a family or as a friend or going up autoimmune mountain, we have to look for ways that we can understand the path that lies in front of us. With our family, we were looking at, this is the path we have to go up and drag each other and put people on each other's backs. And we really had to coordinate to get up there. But one of the things that let us know at the end when we were sitting there with what little water we had left, and we knew we weren't going to make it to the mining town, we knew because there was a trail marker there that said we still had a whole mile, and we were not going to be able to make that mile. It wasn't going to happen, but it allowed us to make a good decision in that moment. And that's kind of what the point of a trail marker is. It's a way for you to be alerted to understand what's going on.
Stacy Griffin: So, if we apply that to our situation with autoimmune disease and chronic illness, just like on a hike, we have trail markers. We have ways that we can have a little more clarity in our journey. Sometimes we need markers to guide us, to show us where we are, where we're headed. And in real life, we know what trail markers are for. But if we look at it in autoimmunity, we think of our trail markers as anything that gives us clues about how things are going. It could be a visit that we take to the doctor. It might be new information we get on our condition. Or it could be waking up in the morning in a lot of pain and realizing, okay, today's path is going to have to be gentler. I won't be tackling a steep trail today. I will not be going out and building that IKEA furniture I bought yesterday because I might die if I try to do that. Instead, we're going to make a pleasant meal and enjoy a little Netflix and maybe take a nap. And that's what we have to sometimes do.
Becky Miller: It's true. So, like Stacy was mentioning, trail markers can tell us what we can expect on the journey ahead. They can warn us of possible risks or dangers. And in our own life, our own markers show us when it's time to slow down or take a different route. I know for myself, I used to have a very... much larger, more active farm than I do now in recent years. I had some physical things that - mostly not being able to get down off the ground, like I said - things that indicated to me I couldn't take care of all the animals that I had. And as my kids were getting older and leaving home, I had to make a different plan. And whether it's farm or even just the day-to-day stuff, the simple stuff like you have company coming for dinner and you had this grand plan of what you were going to cook for dinner and suddenly you're like, do you know what? It's going to be instant. We're eating out, whatever it is. like, you need to recognize when you need to slow down or take a different path entirely. These trail markers in our lives are going to give us guidance on how we're going to navigate our challenges of our chronic illness. So, we need to pay attention to them.
We need to pace ourselves and we need to make adjustments and keep moving, even if we're not sure of what lies ahead. We need to listen to our bodies because we do have some of those built-in trail markers, and our symptoms and the physical signs that tell us when something is wrong warn us when we're trying to do more than we should. We need to pay attention to those.
Alysia Thomas: Speaking of paying attention to those, we like to use the concept of a battery to describe what our energy levels are when you have chronic illness. And similar to the way we would rely on a battery indicator on our cell phones or other devices. And just we check our phone's battery to know if we're running low, what we've got left, if it's going to be what as much as we need for the coming day, for the coming activities, we need to be able to do the same thing with our own energy levels, So we need to be aware of them. And so the battery represents our physical and mental resources. We're going to use this term a lot going forward, 'the battery.'
And your battery, it's going to be different every day probably. And I'm sorry to tell you that you'll get an idea of what your general battery, battery is like, but some days you're going to wake up and you're just going to those days your phone inexplicably drops to 5% and you haven't been doing anything. You'll have days like that. So, I'm sorry to say, but for the most part, we figure out what our battery is. We can make our plan for our day around that to a degree. And we're the ones responsible to keep track of our battery and where our levels are.
And whether it's through eating well or getting enough rest, managing our stress, taking supplements, all of these things affect our battery level. And we have to be aware of them because unlike people without chronic illness, our battery it drains faster than theirs does. their battery is going to last longer than ours does. So, we have to be, I don't want to say hyper vigilant, but we have to be vigilant about watching our battery level.
Alysia Thomas: And just like a phone needs to be plugged into recharge, that would be when we are choosing to intentionally rest, to allow ourselves to recharge so that we can keep moving forward on our journey. That might mean asking somebody to help you with something that needs to be done if it's on a timeline. That might be cutting back on activities that you have planned. whatever it is, it's important to pay attention to your level. It's important not to compare your battery to others. It's important not to compare your battery to what your battery used to be. it's a very different battery than it was.
So, as you continue your journey, really start to learn to pay attention to your body. As Becky said, those trail markers will pop up. Those clues will pop up. Your body will give you cues. You need to learn how to listen to them. Your mind will give you cues. You need to learn how to recognize those cues. It is not something that you might have had to do previously in your life. So, we understand, but you do need to pay close attention, and you will eventually start to learn what your body is trying to tell you.
Stacy Griffin: And once you start to pay attention, then you need to advocate for yourself. Self-advocacy and self-care are essential, especially when you're navigating life with a chronic illness or autoimmune problems. It is so easy to get caught up in trying to meet everyone else's needs. And you have to remember it's important to prioritize yourself, because if you're not well, you can't help other people. And we have to learn to be more kind with ourselves, which means we offer ourselves patience and compassion, but we also need to be firmer with ourselves. And what I mean by that is that we have to advocate for what we truly need. Whether that's saying no when we're stretched too thin or pushing ourselves to stick to a routine that supports our health. We have to be firmer with ourselves.
We need to take care of ourselves because it's not just our physical It's about ensuring that we have energy and that we have mental clarity to live a great life. Now listen, we have one live, one body, and self-care is not selfish at all. We don't want to live a bare minimum kind of life. We want it to be awesome. And that takes determination and a mindset to flourish and enjoy your life. And if we need to be there for other people like family and friends, then they want us to be present with them and as healthy as we can be.
Stacy Griffin: Self-care, like getting enough sleep, eating nourishing food, staying hydrated, and practicing mindful movement are crucial for maintaining our power of our battery and our mental health. So if we commit to self-care, we are ensuring that we will have the strength and energy to be there for the long haul for the people that care about us and for ourselves.
Becky Miller: As we wrap up today's episode, remember to advocate for yourself this week. Embrace the big six. Keep climbing the mountain because your health and happiness are worth the effort. Thank you for joining us today on your chosen platform. Don't forget to and subscribe at autoimmuneadventures.com so you'll be notified of future episodes. And be sure to check out our YouTube channel for extra content. Remember, you are worthy of joy, and your disease does not define your life. You do.
HELPFUL LINKS:
Gentle Cardio for People with Chronic Fatigue:
Yoga for Chronic Pain: https://youtu.be/BFaXfQpxnps?si=Kk9lmZ94DpaHR41v
Chronic Pain Paced Breathing: https://youtu.be/AXny475oczw?si=zfSV-RN4JXxcMqoS
Chronic Illness Workout:https://youtu.be/_S9ucjcbVXw?si=AdedsPPgvyzlNdeE
Justin Agustin - Exercise for Sedentary People https://youtu.be/_S9ucjcbVXw?si=AdedsPPgvyzlNdeE
Comments