What happens when you've spent so long organising your life around surviving that getting better means learning how to live again? In this deeply personal conversation, Sarah sits down with Tami Stackelhouse, author, host of the Fibromyalgia Podcast and executive producer of the documentary Invisible. Drawing from their own experiences with chronic illness, Sarah and Tami explore invisible illness, identity, grief, energy, self-trust and the difficult transition from simply managing symptoms to building a meaningful life again. At the heart of the conversation is a message of hope: your life may look different from the one you imagined, but different doesn't have to mean less.
After years of searching for answers, Tami's fibromyalgia diagnosis finally gave her something concrete to work with. But Sarah and Tami explore an important distinction: living with an illness isn't the same as becoming the illness.
Your diagnosis can be part of your story without becoming your whole story.
Tami describes being able to “hold it together” for a few days around others, while needing significant recovery afterwards. Even her husband couldn't always tell whether it was a good day or a day when something as simple as watching a movie was too much stimulation.
The conversation highlights one of the hardest parts of invisible illness: people can't automatically see what your body is asking you to carry.
Learning to manage symptoms matters. Rest matters. Boundaries matter.
But Tami makes an important distinction:
“Management is the process that lets us get to the life that we want.”
The goal isn't to create a life completely centred around managing illness. Those strategies should eventually help create enough capacity to actually live.
Chronic illness can teach you to fear consequences: If I do this today, what will tomorrow cost me?
As health improves, those old boundaries don't necessarily disappear automatically. Tami describes needing to carefully test them, notice what happens and slowly rebuild trust with her body.
Her accidentally-rock-climbing story perfectly illustrates the process: cautiously discovering that soreness doesn't necessarily mean another flare is coming.
Illness can take things away.
Sometimes those things return. Sometimes they don't.
But Tami and Sarah explore another possibility: identifying what you loved about the thing you've lost and finding new ways of experiencing that feeling, purpose or joy.
As Tami puts it, instead of simply replacing an activity, we can learn to “go after the feeling, not just the thing itself.”
“Just because you're not getting answers doesn't mean that answers don't exist. It just means that the people you're asking don't have them.”
— Tami Stackelhouse
“Management is the process that lets us get to the life that we want.”
— Tami Stackelhouse
“A diagnosis, regardless of what it is, it's a part of the story. It's not your whole story.”
— Sarah Jordan-Ross
Sarah Jordan-Ross (00:00) Hey everybody, welcome back to Taboo Talk with Sarah, the podcast that breaks the silence, fosters hope, and talks about the tough stuff so you never feel alone. If you're new here, I'm your host, Sarah Jordan Ross. I'm a wellness coach speaker, and I believe that our stories have the power to connect us in ways we don't often expect. Today we're talking about something I think many people living with chronic illness probably wrestle with. How do we accept the reality of the body we're living in without allowing a diagnosis to become the entirety of who we are? How do we not have that become our entire identity? And what happens when you spent so long organizing your life around surviving that getting better requires you to learn how to live again? My guest today is Tammy Stackelhouse. Tammy spent nearly 20 years helping people living with fibromyalgia. She's the author of two books, host of the Fibromyalgia Podcast, and executive producer of the documentary Invisible. But before she was helping other people navigate fibromyalgia, she was living with it herself. And that's where I want to begin. Tammy, welcome to Taboo Took. It's great to have you here. Tami Stackelhouse (01:21) It's awesome to be here. I'm over here smiling and nodding. Yes, yes, yes, yes. Sarah Jordan-Ross (01:25) Mm-hmm. Glad to hear it because I was kind of hoping that that's how today would go. So you Tami Stackelhouse (01:35) Absolutely. Sarah Jordan-Ross (01:36) spent twenty years helping people with fibromanda. Partly I'm guessing because you had it yourself. So Tami Stackelhouse (01:46) Yes. Sarah Jordan-Ross (01:47) take me back to that time. What was it actually like living with it? What did people around you see and what didn't they see? Tami Stackelhouse (02:00) Hmm, wow, those are good questions. So I was diagnosed finally. I mean, you know how these things go, right? Like we struggle along trying to figure out what's happening for a while. But I was finally diagnosed in 2007. And I had only been married about six months, which is a whole thing in and of itself. But Yeah, when when I was diagnosed, it was that moment was such a relief because I had been looking for years, years and years, trying to get an answer. And that was what I thought the answer was going to be, but it just, you know, couldn't get the right person, right? And I think that's That's one of the things that I would love for for people to take home from this is just because you're not getting answers doesn't mean that answers don't exist. It just means that the people you're asking don't have them. Right. And so when I was really living in the middle of that. It kind of started before I got married. I worked as the customer service manager for the support department for a software company. I manage the call center is the is the simple way of saying that. Very stressful job, right? Every time the phone rang, it was because somebody had a problem. Every time we, you know, the email would ding, it was because there was a problem, right? And so it was it's just stress, stress, stress all the time. And I remember One day being at work and just thinking, my God, if I could just close my office door, if I could just turn off the light and lay down for a second, I would I would be out. Like I was so exhausted. And I used to tell the girls who worked for me, I used to tell them, if it's not written down, it doesn't exist. Right. My brain just couldn't hold on to any information. Right. You either had to write it down and hand it to me on a piece of paper or you had to email me or it did not exist. Right. And so it was just, it was just so hard. And I was, I was in my twenties, late 20s, early 30s through all of this. And I would go home just sore, achy, uncomfortable all the time. And kind of just thought that was normal. Right. Because I mean you only ever live in one body. Sarah Jordan-Ross (04:45) Yeah. Tami Stackelhouse (04:47) So it's kind of you know, you kinda get used to what that body feels like and you forget that that's not the way it's supposed to be. and so yeah. Sarah Jordan-Ross (04:57) You don't realise not everybody feels that way. Yeah. Tami Stackelhouse (05:00) Right, right, right. And and yeah, it just it was a whole thing. So so that was before I got married. After I got married and I had stopped working. That was a that's a whole other conversation, not really related to my fibromyalgia, more related to my boss, but we don't have to go there. and so after after I was married, I really focused on How do I get better? You know, I was diagnosed only about six months after we got married. So like most of that time it was really focusing on on how do I how do I get better? And it was, I don't know. I didn't have a lot of answers, but I just always believed that the answers did exist somewhere. Right? Like there was never I think this was really one of the things that made maybe made my story different than a lot of people's stories is that I I never once even had the thought that this might be the rest of my life. Like I I always believed there was an answer. I just had to find it. Right. I just had to look in the right place, ask the right person, put the right pieces together. And and That it existed somewhere. So I worked really hard at that and finally got my diagnosis, left the office and cried all the way home because I finally had somebody who knew what to do with me. And and that's kind of where everything started. But not too long after that, and I think this is really like the lowest point of my fibromyalgia story. we we had some people coming over to visit and I was kind of trying to pick up the house a little bit. My husband is very much a morning person and this was like nine o'clock at night. So like he was done. And and I and I'm cleaning and I just started crying because I started like looking around and I'm like, my house is a disaster. People are coming to visit, but it's a like I can't take care of my house. I'm trying to vacuum the stairs and I can't do it. And then I'm like looking at myself. I'm wearing the same pajamas that I'd basically been wearing for a week. And I'm like, I can't, I kind of can't take care of myself. Maybe, maybe this is what disability looks like. And that was really the first moment that I had that thought. Right. So even then I kind of felt like there had to be an answer somewhere, but this was a very different moment. Right. And it was just, it was so hard. I mean, that's invisible illness, right? I I look the same one day to the next, you know, whether it's the day that I get dressed and, you know, go out of the house or it's the day I'm wearing the pajamas for the seventh time. Sarah Jordan-Ross (08:21) But nobody says that Tami Stackelhouse (08:20) You know. No, no, because the day I leave the house is the day that I right. And so even my husband didn't know about this before we got married because he lived in Florida. I was in Portland, Oregon. We're like as far apart as you can get, just about. And so when I would see him, it'd be like for a long weekend, right? And I could hold it together for three days. He never saw that I went home and like did nothing for a week afterwards. And so poor guy, you know, he gets married and he's like, Well, who is this woman? This isn't what I thought I was getting. You know? Sarah Jordan-Ross (09:04) Every marriage, it's just when you have something like a chronic illness that you've been dealing with pretty well, especially when it's a an invisible one. It's like and I'm sure there was part of you saying, Yeah, I didn't sign up for it either, but this is where we're at. Yeah. Tami Stackelhouse (09:23) Exactly. Exactly. Absolutely. And, you know, it it's it can just be so hard. I think for the people around us, I mean, it's hard for us, but I think it's so hard for them. Like I've just like tried to put myself in his shoes so many times over the years and can just imagine. I mean, for one thing, our our guys tend to be fixers, right? And this isn't something that they can fix. And also that invisible piece of it, like he doesn't know is this a good day or a bad day? Is today the day that we can go to the movies, or is today the day that we're doing nothing and I can't even watch a movie because it's too much stimulation for me? Right? So it's it's just it's a hard thing. Sarah Jordan-Ross (10:19) And I I think that's the hardest thing with invisible illnesses or invisible disabilities is that In some ways it'd be easier like if you've got a broken leg, people know what's going on with you and they make allowances or they understand that you will have certain limitations. But when you look like you're absolutely fine, it's hard to understand that actually no, I'm I'm not or yeah, I might be. And yeah. Tami Stackelhouse (11:01) Yeah. Sarah Jordan-Ross (11:02) And it it also changes how you act in different ways because like you might learn what what your limits are but then getting others around you to to understand and the like I know when I was sick because I I was a bit younger than you when I went through my chronic fatigue journey. We were talking about it a little earlier off camera but Tami Stackelhouse (11:33) Mm-hmm. Sarah Jordan-Ross (11:33) it's I was 15 I got three nasty viruses all at the same time. I spent six months that I got out of bed basically to go to the bathroom and that was it. But before I got sick, I was a straight A student. I was a competitive runner. I sang in choirs. I you name it, I did it. Tami Stackelhouse (11:58) Yeah. Sarah Jordan-Ross (12:00) And when I went back to school, like started edging back in, I remember one day I I opened a textbook. 'cause a maths textbook. And I burst into tears because what had been my best subject, like, I didn't even have to really think about it. Things just made sense. I looked at it and this textbook may as well have been in ancient Greek for all the sense that it made to me. And it's like, ooh, okay, I've lost lost that skill, lost that ability. Tami Stackelhouse (12:33) Yeah. Sarah Jordan-Ross (12:33) What else is and yeah, I couldn't run anymore. There was all of those things. And it was hard for my friends who cause I looked exactly the same. And trying to explain what it was like. And I remember way back then, because it was also I'm gonna show my age. Was also in the nineties, the early nineties at that. And chronic fatigue, there wasn't much that was known about it. The same with fibromyalgia. Tami Stackelhouse (13:07) New Yeah. Sarah Jordan-Ross (13:12) And similar to you, I spent years, or my mum spent years too, looking for answers. It took me about two years to get a diagnosis of what was going on. I got taken to an immunologist in Sydney. And I was so so grateful to get that final diagnosis. Cause I was getting to the stage where it's like, am I imagining it? Is it all Tami Stackelhouse (13:42) Right. Sarah Jordan-Ross (13:42) in my head. Like what's what's really going on? 'Cause it was the She's got another virus. If she feels like getting up and going to school, let her go. If she doesn't, then keep her home. And the or I'd do that, I'd be feeling really good, so I'd do stuff and then I'd collapse in a screaming heap. And it took me years to to learn how Tami Stackelhouse (14:10) Yeah. huh. Sarah Jordan-Ross (14:11) to do that. But I know when I got the diagnosis and the doctor said You're not crazy. It's not all in your head. You actually are really sick, and this is what's going on, and explained how my immune system was doing things and how my nervous system was doing things. That made a a huge difference. And then I was actually, okay, now I have a label for this problem. I can actually go about finding things I can do about it. And I did get well and I have been well for a A long time, but But I think as Tami Stackelhouse (14:51) Ha ha Sarah Jordan-Ross (14:52) as we said, even now, years later and I still will do the Am I really tired just because I've been doing a lot? I had teenage sons. Well, teenagers and primary school. I run businesses, I do lots of stuff and just quietly perimenopauses kicking my butt too. So Tami Stackelhouse (15:18) Absolutely. Yeah. Sarah Jordan-Ross (15:19) There's all those things it's like, all right, am I type because of that? Or is this my body and my nervous system trying to tell me something? Tami Stackelhouse (15:29) Right. Sarah Jordan-Ross (15:29) So there's always that little ooh but And we touched on it before you said like getting that diagnosis was a huge relief. And it was for me too, but it's something I've been thinking about through that and watching others with chronic illnesses. I cared for my mum through a a cancer diagnosis and as listeners will know my oldest son has pediatric MS. Tami Stackelhouse (16:03) Mm. Sarah Jordan-Ross (16:03) So looking Through those things, like the diagnosis can make a big difference, but there's something you need to be careful about there too, in that it doesn't become the the way you see yourself. There's a difference between, in your case, saying I'm a fibromyalgia sufferer, or I'm Tammy and fibromyalgia is something I live with. There's that difference between seeing you as your illness, as your disease, as whatever the problem that you're facing is, or seeing it as yes, it's part of me, but it's not all of me. So do you want to Tami Stackelhouse (16:56) Yes. Yes. Sarah Jordan-Ross (16:59) unpack that a little bit for us and what that's been like in in your experience 'cause you've worked with lots of people with fibromyalgia and imagine other chronic illnesses Tami Stackelhouse (17:10) Mm. Sarah Jordan-Ross (17:12) as well. Tami Stackelhouse (17:13) Yeah, yeah. It's it it's such a I mean, I noticed that you were you were doing this as you were talking about it's such a hard thing to like really describe the the difference between the two. And I think, you know, in some ways it kind it's it's more of a a feeling, right? And it's more like subconscious thoughts. Like it's not necessarily even The words that we say or think or the way we talk about it. I mean, I often talk about the fact that I live in a fibro body, right? I think that fibromalgia is probably a whole lot more genetic than we really even know right now. Like I feel like the potential for fibromyalgia is in my body. And so I have to do the things I need to do. To keep it managed. I haven't had any fibropain since 2018. So it's like, you know, it's kind of like you though, right? Where it's like you're you still just because doesn't mean I can go out and do whatever I want, you know, whatever, whenever, however, right? Like that potentialist. Sarah Jordan-Ross (18:32) Climbing that mountain near you might not be a good idea. Tami Stackelhouse (18:36) And at the same time, sometimes it's That is the right thing. I mean, I actually have a client who who hiked with her husband to Everest Base Camp. So, like, yeah. You know, I think it's there is a lot of I hate to I hate to say it this way, but I can't think of anything else right now. but like there's the the more victim. Victimy mentality of this is something that has happened to me. I never know if I'm gonna have a good day or a bad day. my doctor isn't taking, you know, treating me properly. Like you notice with those, I that's why I say I I hate to use the word victim because all of those things can can actually be true. And also there's no agency there, right? And I think that is where a lot of the difference comes in is okay, let's learn what makes my body feel better, what makes it feel worse. If I do this, what happens? And you know, I my dad was a science teacher, and math and science were always my favorite subjects. So I really approached my diagnosis like a science experiment. You know, if I do like start with a hypothesis hypothesis at like test it, do something, see what happens, make note of it, make a new hypothesis, right? And and so there's there's no there's no failure, but also like there's no you're you're you're learning, you're moving forward, you're discovering something else, and it's not passive. Right. There's a lot of agency there. And I feel like I got so far from the question that you asked. You're getting me at the end of my day. So, you know, you're getting the brain that's left. Sarah Jordan-Ross (20:50) That's a good place for us to go though, 'cause it's the Yeah. You've your brain at the end of end of the day. But also it was the that difference between Yeah, this thing's happening and it's really awful and I'm just kinda stuck with it. Or the Yeah, it's awful, but let's have a look and see what I can do about it. And I know For me, and this is very much a looking back now, I probably didn't say the same thing at exactly like when I was in the in the thick of it, but when I started to get better because yeah, my my mum was big on research, so she would look and see what was what was happening and it's the Don't stop looking till you get an answer, till you get something. It's like and once we got that label of this is what's going on, it's like, okay, so now we can can work on that. But it was the the testing my limits and working out, yeah, I can do this, but so say for example, I can walk a kilometer. I can't walk two. Tami Stackelhouse (22:13) Right. Sarah Jordan-Ross (22:14) And learning where that was and Tami Stackelhouse (22:17) Yeah. Sarah Jordan-Ross (22:18) learning what those limits are and learning to to live with that and the okay, I may not be able to do the things that I thought I was going to do. Okay, 'cause growing up my plan had been postgraduate medicine. But Tami Stackelhouse (22:38) Very intense. Sarah Jordan-Ross (22:41) And I was on track with that. I was a Science Geek was doing really, really well. Went to science summer school in year twelve. went and did my arts degree. But then When I'd was finishing my degree, it's like Right, what am I gonna do now? 'Cause I don't know that I've got another five years of hard academic slog left in me. Tami Stackelhouse (23:18) Right. Sarah Jordan-Ross (23:21) Where I was, take this, started a remedial massage diploma, a diploma in health science, massage therapy. And massage was one of the things that had really helped me in my my wellness journey. And combining the best of complimentary therapies with allopathic medicine was what had worked for me. So I Okay, medicine's out the out the door, but it doesn't mean I can't still do something in healthcare and that I can't still help people get well or stay well. Tami Stackelhouse (24:06) Mm. Sarah Jordan-Ross (24:09) I became a remedial massage therapist and I'd been in that field now for twenty five years and branched into other forms of of wellness as well. And looking back At the time, I wouldn't have wished that experience on anyone. But at the same time, if I could go back and not have it, that's not the choice I'd make either, because I wouldn't be who I am, where I Tami Stackelhouse (24:43) Yeah. Sarah Jordan-Ross (24:43) am doing what I do had I not had those experiences. And Tami Stackelhouse (24:50) Yeah. Sarah Jordan-Ross (24:52) I don't think I would have been. as equipped to deal with my son's diagnosis if I hadn't have had that experience. also I cared for my mum through cancer and interestingly I'd done oncology massage training just before she was diagnosed. So Tami Stackelhouse (25:12) Wow. Sarah Jordan-Ross (25:14) it's like things happen for a it's Tami Stackelhouse (25:16) Yep. Sarah Jordan-Ross (25:18) like you may not be able to connect the dots at the time that it's happening, but later you go, Tami Stackelhouse (25:22) That's right. Sarah Jordan-Ross (25:23) that's why that And Tami Stackelhouse (25:26) Absolutely. Yeah. I I think you're you're kind of touching on on that question that you asked at kind of at the beginning about who are we now? You know? And I Sarah Jordan-Ross (25:39) Hmm. Yeah. Tami Stackelhouse (25:41) it's you may not be who you thought you were gonna be, right? Or or who you were right before your diagnosis or whatever. But It's such an opportunity to figure out who else you are, right? Like not in a reductive way, but in a more of a plant growing branching kind of way, right? Like little Tammy, she dreamed of being a librarian. She did not dream of having fibromyalgia. You know, but also. When I was in third grade, my no, fourth grade, my fourth grade teacher, I still have this note. He wrote me a note and it was like attached to an assignment or something like that. And it the one line in it that I've never forgotten is those of us who have a book in us should find a way to let it out. Fourth grade, and he saw that in me, but it took fibromyalgia to unlock that and to actually like this is what I need to write this about. Right. And I think it's everything that we experience is part of us. Right. And when we, you know, when we have something like fibromyalgia or chronic fatigue or cancer or whatever it is that happens to us, that is that's an opportunity to see who else we are. I mean, that doesn't mean it's not a horrible thing, Sarah Jordan-Ross (27:14) Mm-hmm. Tami Stackelhouse (27:17) but there's more to the story than that. You know? And I think that is maybe where the difference is. Is is do you are you somebody who sees this as maybe the opportunity to discover more of the story? Or are you somebody who sees this as the end of the story? Right? Sarah Jordan-Ross (27:44) And how you think about it is going to change how that story progresses. Tami Stackelhouse (27:51) Absolutely. Absolutely. And I've had so many clients who who really were both places, right? A lot of times when people come to me, they're in that place where this is the end of the story. But they're they have just enough hope to try one more thing. Right. And through working together, often I will have people who like find whole new lives. Right. So maybe I couldn't be a teacher anymore. Like maybe that was just like my body can't physically do that anymore. But now I can be a coach. Or maybe I couldn't do this, but now I can do that. it's it's it's such a fun thing, I I think, in in my job. To be able to help people get their lives back. It doesn't always look the same, like it'll never be the same life. But we can't go back in time anyway, right? Like it's never gonna my life is never gonna look like it did when I was 20, right? It and I think we need Sarah Jordan-Ross (29:05) Would you want it to? Tami Stackelhouse (29:07) no. This is the best. but but I think we need to look at it a little bit more like that, right? Just like we we wouldn't w try to hold on to high school. I know some people maybe do. You couldn't pay me enough. but Sarah Jordan-Ross (29:26) No. Tami Stackelhouse (29:26) I I also wouldn't go back to life before fibromyalgia either. Sarah Jordan-Ross (29:34) Which I know hearing both of us say that, the we wouldn't choose to not have that experience or to have the life that we would have had. And I think sometimes that's the well, if I had of had that life, what if the life that I have now wouldn't have happened and am I willing to give that up? No. Tami Stackelhouse (29:57) That's right. And for the people who Sarah Jordan-Ross (29:57) Yeah yeah, so that's the Tami Stackelhouse (29:59) are stuck in that place of living the life you don't want, I mean, it's one thing to say, yeah, I wouldn't change it now that you're living the life that you do want. but when you're stuck in that place of living the life that you don't want, I think the important thing is just not to lose that that agency, right? That that ability to make your life what you want it to be. Like obviously there's there's all kinds of factors to that, right? Like the resources that you have and the health that you have and what you have around you, right? Not having money is almost as bad as living in a very rural area. Like resources, not good. but that doesn't mean you can't do anything. You know, and and to just keep looking for those answers and to keep moving forward. It's also a really great opportunity to realize that the value of you as a human being has nothing to do with what you do. You know, when you have something like this, like you not being able to get out of bed for six months, right? Like I'm not doing a whole lot. So Sarah Jordan-Ross (31:19) No. Tami Stackelhouse (31:20) But it's a really great opportunity to like shift that how we see ourselves and realize, you know, people still love us. And if they don't, they're not the right people anyway, but that's a different podcast, probably. Sarah Jordan-Ross (31:35) Yes. Tami Stackelhouse (31:38) But you know, I mean, Sarah Jordan-Ross (31:41) Yeah. Tami Stackelhouse (31:41) yes, yes. Yeah. Sarah Jordan-Ross (31:46) But yeah, it's the it's very much the getting to know I think being faced with a chronic illness, it sometimes does give you that opportunity to get to know who you really are outside of the different hats that you wear or the different things that you do and who you are. When nobody's watching? Tami Stackelhouse (32:19) yeah. Sarah Jordan-Ross (32:20) Because sometimes we're we're different depending on who our audience is or or where we are. And sometimes yeah. Tami Stackelhouse (32:29) How we talk to ourselves up here where nobody can hear. We would never Sarah Jordan-Ross (32:34) Yes. Tami Stackelhouse (32:35) say out loud. Yeah. Sarah Jordan-Ross (32:36) No. And sometimes we say so many horrible things to ourselves that we would never say to anyone else. And I remember somewhere along the line being told. If you wouldn't say it to your best friend, don't say it to yourself. But also the when faced with a problem, if somebody was coming to you and telling you all the things that they had going on that were the same as what you have, you'd know exactly what to say to them, how to help them. You may or may not put the the fixed hat on, you might just do the Well, I'm just gonna sit here and and listen and let you go blah, because you'll probably find the answers yourself. But it's the Tami Stackelhouse (33:31) Mm-hmm. Sarah Jordan-Ross (33:33) it sometimes forces us to actually stop and think about how we're treating ourselves as much as how we're treating other people. Tami Stackelhouse (33:47) Yeah. Sarah Jordan-Ross (33:47) And being kind to ourselves and learning what our limits are, but then also that was something I wanted to ask you about too. When we've lived with chronic illness for such a long time and we we get accustomed to what those limitations are. You learn what you can and you can't do. You learn what causes pain or will cause it to flare then how much energy you do or don't have and you get comfortable with that and making those changes that you need to. But then sometimes when you start to get well and those limitations shift, that can be a scary place as well because it's like, hang on. can I maybe Do more than I thought I could, or could I do this thing that I've only ever thought about or haven't even let myself Tami Stackelhouse (34:56) Yeah. Sarah Jordan-Ross (34:57) think about? Yeah, so we get comfortable Tami Stackelhouse (35:01) Yeah. Sarah Jordan-Ross (35:02) with the uncomfortable. And Tami Stackelhouse (35:06) Mm. Sarah Jordan-Ross (35:06) then when things start to improve, we get uncomfortable again in a different way. And it's sometimes hard. To learn to trust your body again and to to start testing those boundaries of what you you can and can't do. Tami Stackelhouse (35:26) Yes, yes. I it's it's something I see in my clients all the time and and ha happens to me from time to time. My best friend and I accidentally went rock climbing one day. We we Sarah Jordan-Ross (35:41) You'll have to tell me how that can be an accident, but okay. Tami Stackelhouse (35:45) it was easy going down. Let's just say that. We we had gone on this hike and getting from our car down to the the trail. We didn't realize how steep that actually was until it was time to come home. And we were like, it was there were moments where I'm like, my God, am I gonna be stuck down here forever? but the coolest thing was this only happened a couple of years ago. And she and I met at a fibromalgia conference. So we both have fibromalgia. And both of us had done been doing really well and hadn't had pain in a long time, all of that. And after accidentally climbing a mountain, both of us, like we came home and were like, what what's tomorrow gonna look like? Right? Because Sarah Jordan-Ross (36:41) Yeah, am I gonna pay for that? Tami Stackelhouse (36:43) right, exactly like, my gosh, am I gonna am I gonna have fibromyalgia for the pain for the first time in like five years? Might be today. and then So both of us like we did the things that we know to do, right? Like I think she took an epsom salt bath, and I think we both took like some Advil, make sure we got good night's sleep and like some of those kinds of things. And when we got up the next day, both of us absolutely we were sore. We are not people who rock climb. So we were definitely using muscles that had not been used. So Of course we were sore. And and when you've had something, a chronic condition like this, there is that fear of that other shoe dropping, right? Is this soreness in my body because I haven't used muscles in a while? Or is this a harbinger? Right? Is this more to come? And we neither one of us ended up in a flare. We definitely were sore for a couple of days. And and a lot of people ask me, it was the difference. How do you know the difference? Well, the main difference is the parts that hurt were the parts that were supposed to hurt, right? Like they Sarah Jordan-Ross (38:04) Yeah. Tami Stackelhouse (38:04) it was clearly the muscles I had not been using before, right? Or using in a in a different way. And it wasn't that overall every like, you know, body pain everywhere, right? So it's Sarah Jordan-Ross (38:19) Yeah. It wasn't the I've been hit by a bus kind of feeling. It was Tami Stackelhouse (38:23) Right, right. Or somebody beat me all over with a baseball bat instead of just I used these muscles too much. And then, you know, I had I had a minor surgery a couple years ago or a couple months ago and found myself extra tired afterwards. And it was a similar kind of thing, you know, the parts that hurt were the parts that were supposed to hurt. And healing takes energy. So of course I'm tired. But You know, the fatigue part is a little bit harder, I think, because you kind of got to wait for it to clear before you really know it's not quite the same as, yeah, that muscle, right? but it is it is exactly what you're describing. We have to, we lose trust in our bodies, right? And then so this is like kind of the whole cycle. We we lose trust in our bodies, and then we have to get that. trust back by learning our limitations, by doing small things, by building that relationship with our bodies. And then as we get better, we actually have to push those boundaries in a safe and careful way. I don't recommend accidentally rock climbing. But but but you know okay let me let me try doing a little bit more and then see what happens. Right. we have to push those boundaries and then see and build trust in it in now a new way, right? And one of the things as you were as you were talking about that, one of the things that I developed was the fibromyalgia hierarchy of needs. It is based off of Maslow's, but Maslow didn't account for a chronic illness, right? So those those things are a little Sarah Jordan-Ross (40:12) So many things don't. Tami Stackelhouse (40:15) Funny thing. and so things like like those basic needs can include things like adequate pain management, right? A doctor who like the relationship level includes a doctor who believes you, right? And treats you like a real human being. Well, when we get to the self-efficacy stage, that's exactly what we're talking about here. Where we are testing those boundaries in a safe way to, you know, okay, so I do that. My body said no. Now what do I do? And like learning how to interpret those signals and know how to manage that. And then of course the goal is to move beyond that into self-actualization, to have a life beyond just managing your symptoms, right? Because when we are When we're at first, it's important that we learn to manage those symptoms, right? Because that's how we get everything back under control. That's how we give our bodies the break that they need to to heal, to get better, right? Like we can't be using all of our energy and falling into bed with nothing because healing takes energy. We have to have some left, right? So, but then after that, if if we're continually stuck in that place of This is what I have to do to manage my symptoms. And every day becomes a checklist of all the things we have to do. That's kind of not life either. Right. Like that's that's the Sarah Jordan-Ross (41:53) That's living in survival mode. Tami Stackelhouse (41:54) yeah, like that's the process, maybe that we go through, but that's not the destination. Right. Like we have to do those things for a while, but ultimately we do them so that we can do other things. Right. Like I do not go to bed on time. I could end the sentence there. I'm that's just my my Achilles heel, but I don't try to go to bed on time. Let's let's say it that way. just for that reason. I do it so I can do other things. Going to bed on time isn't fun. But the things that I get to do because my body feels good and has the energy it needs and isn't in pain, those things. That's why we do it. And I think when you have been living with something like this for so long, you lose sight of the fact that I'm not I'm not avoiding gluten just to avoid gluten. I'm doing it so I can go live my freaking life. Sarah Jordan-Ross (43:02) You do those you make those changes because they allow you to not just survive but actually build a life in which you thrive. Which Tami Stackelhouse (43:13) That's right. Sarah Jordan-Ross (43:14) sometimes is a whole lot easier said than than done. Like it takes work and healing takes work and takes takes energy, but it is worth Tami Stackelhouse (43:26) And often it takes help. Sarah Jordan-Ross (43:28) yeah. Tami Stackelhouse (43:29) You know, like this is this is hard. And depending on the support that you have around you, like if you've got really supportive family, friends, coworkers, like none of us has that perfect of a life. But conceivably you could, I mean, I didn't even figure it all out on my s by myself. I I had to, I mean, when When your brain doesn't work, it's hard to think about how could I have done that different, right? Because your brain doesn't work. And my God, my coach was so invaluable to me. That was probably the thing that she helped me the most with was when something would happen and we would sort of debrief after the fact, right? And she would ask me questions like, Well, what about this? And what happened with that? And essentially, Could you have done anything different? And sometimes the answer is yes. And so next time we do it different, right? And then we debrief after that. but sometimes the answer is no. And it's like, okay, then we we did the best that we could, right? And and then also helping me before things in a similar way, right? Okay, this is gonna be hard. What can we do to make sure? Like, is there any way we can make this easier? Could you rest beforehand? Can you? block off time afterwards to so if you do crash, it doesn't like ruin your whole schedule. Like there's so many things with that. And that's probably my favorite thing to help clients with now is just that thinking through life and learning the lessons we lean need to learn. And also making sure that management isn't the end goal. Management is the process that lets us get to the life that we want. Yeah. Sarah Jordan-Ross (45:27) gets us into yep living the best life that we can with with some limitations in place but yeah they don't necessarily have to be limiting in terms of cutting you off from opportunities. It's the knowing if I do this then I can't do that. The everything that you say yes to is something else that you say no to. Yeah. Tami Stackelhouse (45:58) Yes, yes. you're singing my song, Sarah. Yes, say Sarah Jordan-Ross (46:01) Yeah. Tami Stackelhouse (46:03) no to say yes. that Sarah Jordan-Ross (46:05) Yes. Tami Stackelhouse (46:05) was actually like one of my very first podcast episodes was titled that. But it's it's Sarah Jordan-Ross (46:09) Yeah. Well I'll let Tami Stackelhouse (46:12) it's so true, you know? Sarah Jordan-Ross (46:15) One of the things that like I read in a a chronic fatigue journal way back when and was this woman who was like in the thick of it Tami Stackelhouse (46:34) Yeah. Sarah Jordan-Ross (46:34) and she'd figured out Her energy balance, her that I can do this much, but I can't do that. And I think she'd been like she'd figured out with laundry. Throw things to the bottom of the stairs and pick them up from there rather than cutting things up and down. She'd done really clever things like that to to work out I've got this much energy to spend, this is how I'm gonna spend it. So that she could still get things done, but not collapse in a screaming heap after. But the thing Tami Stackelhouse (47:14) Yeah. Sarah Jordan-Ross (47:15) and that made me laugh was in this particular article. She said, Her husband got home one night and she said to him, I can cook dinner or we can have sex. I can't do both. The very smart man bought takeout. Tami Stackelhouse (47:33) That is that's that's that's a perfect example, right? Sarah Jordan-Ross (47:35) That's the thing. It's Yeah. Tami Stackelhouse (47:38) And I I you're probably familiar with the spoon theory, right? so Christine Sarah Jordan-Ross (47:43) Yes Yep. Tami Stackelhouse (47:45) Mizerandino, when she wrote that, one of the things that she says at the in the introduction of it is that a life With chronic illness, I think she says it actually the other way around, but life with chronic illness means a life where you have to make a lot of decisions. I think she says it the other way around. But it's it really is about those decisions. And I think people who haven't lived this life don't understand how many decisions that actually is. Right. So if my husband called me up and said, Hey, do you want to go to the movies tonight? It's not one decision of yes, no, do I want to go to the movies? It's okay. What time does it start? When's it gonna end? Which theater? Is it the comfortable seats? Is it not? Is it, you know, are we gonna be able to eat first? what have I got going on tomorrow? How busy was today? Right? Like it's all these, like it's a thousand decisions to be able to give one yes or no. Do you want to go to the movies? Right. And so for me, I have found that that being so hyper conscious of the fact that number one, I don't have all the energy in the world, right? I gotta make choices. And then also number two, being aware of the consequences of my choices, right? That everything I say yes to is something else I'm saying no to, and vice versa. Think is part of the reason why I've accomplished so much in my life, right? Every person on the planet has a limit to their their time and their energy. Your limit may be more or less than mine, right? But everybody has a limit. And when you know, I mean, I learned this lesson way back, way back in the day, when you've got this much energy, you want to make it count. Right? Like the guy who buys takeout. okay. If I these are my choices. Right. I'm I'm, you know, if I'm not gonna waste precious energy on cleaning the toilet. Maybe that's something I hire out help for or whatever. Right. And sometimes that the way she presented that choice is I think sometimes what we actually have to do. Right. Like, you know, if if you've got the husband, kids, a boss, right? I used to do this with my boss. Okay, you've given me this, this, and this. Which is the thing that's most important? Right. And that doesn't matter if you have fibromyalgia or MECFS or nothing. Right. Like you can't do everything. But being really aware of those choices, I think can help us make better choices. And fill our lives and our time with the things that actually matter most to us. Sometimes that can be tough with other people's expectations, right? And maybe the season that you're at in life, right? I had a friend at one point who had five kids under the age of five. I have no idea how she did it. You know, I mean, obviously it you know, in a situation like that. Self-care looks different, you know? so yeah, Sarah Jordan-Ross (51:15) It does. That might be the five seconds to herself. Tami Stackelhouse (51:21) totally. And maybe it looks like, you know what, maybe some things go on hold until at least a few of these are in school, you know. I mean, and I think that's the thing that can feel so scary with a chronic illness, too, is that when we're giving something up, it feels like Giving it up forever, you know? And and it's not, it doesn't have to be forever. I mean, if you if you broke your leg and you had to stay off of it, and if you didn't stay off of it, you run the risk of maybe having a messed up leg for the rest of your life. You're you're gonna figure out how to stay off your foot, right? You're you're gonna find a way to rest. And with something like fibromalgia, we're not talking, you know, a certain number of weeks. We might be talking months or probably even years, Sarah Jordan-Ross (52:18) Yes. Tami Stackelhouse (52:19) but that doesn't mean those things can't come back. You know, and the whole point of giving some of those things up is so that we can give our bodies the space to heal so that we can get them back, you know. And I I, yeah, there's just so much. So much. Sarah Jordan-Ross (52:37) Or possibly the things that you give up, you'll find another thing that lights you up even more than that thing. I know I I look at my son and myself in some ways too, but particularly my son. Before he was diagnosed with MS, he did cross country running. He loved it. He got si he can't well he probably could now maybe start to because he's doing really, really well. He he learnt to walk again, he's and he walks long distances again now. He just doesn't Tami Stackelhouse (53:24) That's awesome. Sarah Jordan-Ross (53:25) run as much as he used to. But Tami Stackelhouse (53:27) Yeah. Sarah Jordan-Ross (53:28) he discovered the bass guitar. So he puts as much energy into that now as he once did into He's running. That's the yeah. There may be that that gap or the I can't do this anymore and that's hard and you have to grieve for that thing that you have lost. But that doesn't mean either that you can't get it back or that you won't find something else that gives you as much joy as that. thing did and I think sometimes that's the thing when we heal it's the okay it doesn't look exactly like it used to it looks different Tami Stackelhouse (54:24) Yeah. Sarah Jordan-Ross (54:25) but different isn't isn't bad it's just different and getting Tami Stackelhouse (54:31) Right. Sarah Jordan-Ross (54:31) comfortable with that with the okay things aren't how I thought they'd be maybe just maybe they're better. Tami Stackelhouse (54:40) Mm-hmm. Right. I think it's really cool that you are watching your son go through what you and I talked about that that has happened for us in our lives, right? Like I wouldn't go back and change a thing. And, you know, maybe someday he says the same thing, you know. I yeah, I can't run anymore, but my goodness, I I would never not want to be where I am now. You know. yeah, it's such a it's such a cool thing. And I think that. shoot, where was my brain going with this? Mm-hmm. well, never mind. It'll come back to me if it's important. You know, that's part that's part of it too. Like you just have to hold it loosely, right? You have to you have to be able to laugh. You have to, you know, all of that. I know what I was gonna say. so for someone who's listening to this who is like, gosh, but I loved that thing. Ha, you know, how can I possibly replace it. One of the big things that I would, I would say, and I do this with my clients, is try to figure out what about that thing really brought you so much joy. So I often will use the example of gardening because there's so many ways you can take it. But like let's say you love to garden. When you sit down and think about it, is it because of being outside in the fresh air? Right? The fresh air, the the sun, the smell of the dirt, right? Is it because you get to grow fresh vegetables that you get to feed your family? Is it because fresh flowers in the house? Like what is it about gardening? Is it, I don't know, participating with God and making something grow? Like what are what is it that really that you just love about that? Because if we can identify that and we can identify that feeling, it's a whole lot easier. Like if it's being outside in the sun in the fresh air, maybe going to the park or taking a gentle walk, you know, i through the woods will do a similar kind of thing. If it's fresh vegetables, maybe you start shopping at the farmer's market. Right. Maybe it's important for you to buy fresh flowers every every week when you get groceries, even though it seems silly. Maybe like because maybe that's important to you. Or maybe maybe we modify the activity, right? Maybe we start exploring container gardens or more ergonomic ways to garden. Maybe we experiment with, you know, a few small pots or some. herbs in the kitchen windowsill, right? Like there are so many things that we can like modify or go after the feeling, not just the thing itself. And it can, it can be hard, right? To take a thing and distill it down to like what are the pieces, but that's how you we're not talking about, you know, don't ever garden again and now you're gonna take up needlepoint and it's just as good. Right? Like, no. Sarah Jordan-Ross (58:02) Ha ha ha. Tami Stackelhouse (58:05) Maybe. I suppose maybe, you know, but but I think there's an intelligent way to do that where your chances are more likely. Yeah. Sarah Jordan-Ross (58:20) So we'll follow the the gardening one. So for example used to love just like weeding the garden, getting your hands dirty and making order out of chaos. Tami Stackelhouse (58:34) Yeah. Sarah Jordan-Ross (58:36) Okay, you might not be able to spend hours doing that but could you like pull a couple of weeds out when you hang washing on the line? Or could you when you check them out, could you s it's that feeling of Yeah. Tami Stackelhouse (58:54) Grab a couple on the way through. Yeah, yeah. Sarah Jordan-Ross (58:59) Or is there any other areas where it's like say it's the making order out of out of chaos is the thing that that lights you up? Where else can Tami Stackelhouse (59:07) Feels satisfying. Yeah, yeah. Sarah Jordan-Ross (59:10) you do that? And you Tami Stackelhouse (59:11) My garage. Sarah Jordan-Ross (59:12) might not be able to organize the whole house anymore, but Tami Stackelhouse (59:16) Yeah. Yeah. Sarah Jordan-Ross (59:18) you can pick one draw and do that. And it adds up over time. Yeah. Tami Stackelhouse (59:20) Yes. Yes. You can you can cut it down to a piece, right? Or you can also cut it down to a certain amount of time. So maybe you set a timer for 15 minutes of of weeding and then I am going in, period, end of story. Right. Like some of this is and I would start, it's so hard to do this, but start with a smaller piece than you think. Right. Because you can always say, that went really well. Next time I'm gonna do a little bit more. It's a lot harder to say, no, I'm gonna do an hour. And then you've just wiped yourself out for a while. Right. It would be better to do two weeds and then be able to do two more. Yeah. Yeah. Sarah Jordan-Ross (1:00:11) That's it. And take it little little steps. You still get where you're going. It just takes you a bit longer to get there. And sometimes taking the scenic route to get to places isn't a bad thing. Tami Stackelhouse (1:00:25) No, I mean I self identify as the tortoise and the tortoise and the hare. Right? Little little baby steps. Sarah Jordan-Ross (1:00:32) He got where he was going. Tami Stackelhouse (1:00:34) Mm-hmm. Yep. You still get there. Sarah Jordan-Ross (1:00:38) Yeah. And I think that's probably a a good place for us to start drawing things to a to a close. But for somebody who's listening, what is the one thing that you would like them to take away from today? Tami Stackelhouse (1:00:57) So the one thing if you're if you're listening to this and you have fibromyalgia, so I'm actually going to give you two things: one for the people with fibro and one for the people without. So if you're listening to this and you have fibromyalgia, the one thing I want you to take away from this is that feeling better is possible. Right? Maybe you have not found the thing that's worked for you yet. That doesn't mean it doesn't exist. Maybe your doctor doesn't know what to do with you. That doesn't mean that nobody. knows what to do with you, right? You just you've got to keep looking. And I've got all kinds of free resources. We can talk about that. but there there are answers out there. Don't give up. Feeling better is absolutely possible. I help people do it every day. So that's that's that side. If you don't have fibromalgia and you know somebody who does, believe them, trust them, share this episode with them. if you're dealing with another chronic illness, same kind of thing. Like you can you can build whatever it is that you're dealing with, whether it's a health thing or five kids under the age of five or whatever it is, right? Like you, you can build a beautiful life. It just might look different, you know? And and I think it's really important just to to have that hope and that You know, just to to keep keep working at it. Sarah Jordan-Ross (1:02:31) Yeah. Keep believing that it's possible. Tami Stackelhouse (1:02:34) Absolutely. I think it all starts there. If we don't have that that that glimmer of hope and that belief that something is possible, then of course we're not going to try because like it's not even there. And so that's kind of what I see as my mission in life is to really help people reimagine what's possible with fibromalgia because it's a lot more than you think. Yeah. Sarah Jordan-Ross (1:03:04) Yes, sometimes we just need to look a little deeper and let ourselves imagine what it could be like. And to hope Tami Stackelhouse (1:03:14) And you don't Sarah Jordan-Ross (1:03:14) that Yep. There you go. Tami Stackelhouse (1:03:17) I was just gonna say you don't you don't have to have the whole picture either. Right. I think that's sometimes the when we say things like reimagine what's possible, it's like I I I can see this much. That's okay. You just need to see Sarah Jordan-Ross (1:03:30) Start there. Tami Stackelhouse (1:03:30) the next step. Yeah. Sarah Jordan-Ross (1:03:34) Yeah, you don't have to see the destination. Enjoy the journey and each little step along the way. And reach out for those who can help you. So we'll have Tammy's details in the show notes. So if you want to reach out to her, you'll be able to, or if you want to drop me a line and I can I can connect you because I kinda like doing that. Tami Stackelhouse (1:04:06) Yep. Sarah Jordan-Ross (1:04:06) I think we can all help each other in different ways and if we see somebody who I can't help them but I know someone who can, then put them together. Tami Stackelhouse (1:04:19) Absolutely. Yeah. Sarah Jordan-Ross (1:04:21) So I wanna thank you so much for for being here and like you that's the one thing that I hope people take away from our conversation is that there is always hope. There is always something you can do and life may look different to what you thought it was going to be. A different picture can be just as beautiful, you just need to to look for the beauty in that. Tami Stackelhouse (1:04:56) That's right. Sarah Jordan-Ross (1:04:57) And accepting where you are and accepting those limitations, but also believe that something more is possible. Those things can both exist. They are not opposites. We need to acknowledge the realities of living with a chronic illness and respect the limitations that we have to live within. We grieve for what what was and what won't be the same again, but we can still hold on to hope that something just as good or maybe even better is possible. Healing isn't always about getting back to who we were before we became unwell. Sometimes it's learning to trust who we are now. and take from those experiences what the gift from them can be. Tami Stackelhouse (1:06:07) Yes, I absolutely agree. Yeah. Sarah Jordan-Ross (1:06:09) Yep. And remember that a diagnosis, regardless of what it is, it's a part of the story. It's not your whole story. And sometimes moving beyond just survival mode, it's not just having fewer symptoms, although that's that's yeah, but it's the living that full life again with those. Tami Stackelhouse (1:06:40) Yes, you do not have to wait until you're completely symptom free before you can have a life. I mean, if that had happened, Sarah Jordan-Ross (1:06:47) No, definitely not. Tami Stackelhouse (1:06:49) we would not be sitting here talking. Sarah Jordan-Ross (1:06:52) Nine. No, if some fairy waved their magic wanted we were all magically better, we wouldn't have these experiences to share. And as hard as they are, Tami Stackelhouse (1:07:04) Yeah. Sarah Jordan-Ross (1:07:05) sometimes it's the the sharing them that ends up being the best thing out of those experiences. Tami Stackelhouse (1:07:12) Absolutely. Yeah. Sarah Jordan-Ross (1:07:16) So I want to thank you so much, Tammy, for being here and for sharing your experience with us and for planning that little seed of hope for all of our listeners. So to everyone here, thank you for being here. If something that we've spoken about today has touched you, or you think somebody near you may benefit from hearing it, Please share this episode with them. Until next time, I'm Sarah Jordan Ross and this has been Taboo Talk. Take care of yourselves, take care of each other, and remember your story matters, so share it, because it might be your story that changes someone else's life.