Episode 01: The Fibromyalgia Podcast Values & Philosophy

Episode 3 cover art

The Fibromyalgia Podcast Values & Philosophy

Keys to Living a Fibro Life You Love

  • Do you feel like a prisoner in your own your body?
  • Do you say things like, “Can’t I just get a new body?”
  • What if you and your body were actually on the same team, working together, to break free of the fibromyalgia prison of pain?

  • I believe fibromyalgia does not need to be a life-ending illness.
  • I believe there are ways for every person with fibromyalgia to feel better.
  • As patients, the more we know, the better we can advocate for ourselves.

  • I believe in laughter! We need humor and a lightness that makes life worth living.
  • I also value beauty, grace, self-care, and just being kind to one another.

  • I believe fibromyalgia is like blind men describing an elephant!
  • I believe you get better faster when you slow down.
  • I believe the world doesn’t revolve around your illness—it revolves around your healing.

  • I believe that talking to somebody who understands is a healing activity in itself.
  • I also believe that, in general, most of us really do know what we should be doing. The challenge is actually doing it.

In a fresh approach to hope and healing, Tami Stackelhouse shares what she has learned from a decade of taking her life back from her fibromyalgia diagnosis.

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Transcript

You’re listening to the Fibromyalgia Podcast, Episode 1.

Welcome to the Fibromyalgia Podcast!

I’m your Coach, Tami Stackelhouse. In this first episode, I would like to share with you a little bit about my values, and my philosophy about living your best life with fibromyalgia.

This podcast is going to be a little bit different than most.

One of the big things I want you to understand is that I don’t believe fibromyalgia needs to be a life-ending illness. I believe it can be very severe for many people, but I don’t think it automatically has to be that way.

I believe that there are a lot of ways you can feel better. How much better you feel, and how you go about that, of course, varies a lot from person to person.

[01:35]  It can depend on what other illnesses you have. If you have compounding illnesses, obviously, that is going to make it harder for you to feel as good as you did before you got sick. At the same time, it depends a lot on how quickly you’re diagnosed and how quickly you get treatment after being diagnosed. It depends a lot on how long you’ve been sick and how long you’ve gone without having good treatment.

[02:02]  A lot of it depends on your resources. As unfair as it may seem, the more resources you have—whether we’re talking money resources, or living in a town that’s bigger and has more opportunities versus living in a small town in the middle of nowhere.

[02:20]  All of those things are factors in how much better you can feel. So, please, understand that when I talk about feeling better, I mean literally just that: feeling better than you do right now, here, today. I believe every single person listening to this podcast can find ways to feel better.

[02:40]  That is what this podcast is going to be all about. I’ll be teaching you about all the different kinds of research that’s being done, treatment options, and things I found to be helpful, so that you can figure out your ways to feel your best.

That is my big number one value: there are ways for every single one of us to feel better.

[03:01]  I believe in hope. If I could summarize my whole existence here on earth in two words, it would be to encourage hope. That’s what I was made to do. I really do hope that you will listen to this podcast and be encouraged—and have some hope that there are ways for you to feel better, and for you to get back to living a life you love.

[03:27]  I also believe in education. I believe that as patients, the more we know, the better we can advocate for ourselves, and the better treatment we can get because we know what’s going on around us.

You may have a great doctor who knows a lot about fibromyalgia, but if you don’t actually follow through and do the things they’re asking you to do, then you won’t feel better. It’s like going to the dentist twice a year and expecting to have good, healthy teeth. You have to actually go home and brush your teeth!

Fibromyalgia is the exact same way. You may have a great doctor but you still have to be the person that goes home and does the work. The better educated we are, the more we understand what we’re doing, the better decisions we can make, and the better we can feel.

[04:14]  I also believe in laughter. You will hear me laugha lot!—and that is just because I feel we’ve got to approach life with humor. There are a lot of things we can control and a lot of things we can’t control. If we can picture life as this magnificent science experiment, that really does help, because then there is no actual failing, right? It’s just opportunities to learn—and I don’t mean that in some fluffy pie-in-the-sky kind of way!

[04:45]  As you will hear more of my story in Episode 3, and as you heard in the trailer episode, I filed for Social Security Disability. My illness got bad enough that I had a hard time leaving the house. In fact, I only left the house about once a week, for a while, and it was really, really difficult.

I’m not saying this from the perspective of somebody who hasn’t been there. Sometimes, all you can do is laugh. We just need to have humor, and have a lightness in our life that makes life worth living.

[05:16]  I also very much value beauty. I value grace. I value self-care and just being kind to one another. So, you’re going to be hearing a lot about that.

"I value beauty. I value grace. I value self-care and being kind to one another." Tami Stackelhouse

I also believe in advocating for ourselves. You’re going to be empowered with a lot of things from me, about how to stand up for yourself and get what you need to feel your best.

[05:42]  So, let’s talk a little bit about some of these more specific core values and philosophies.

In Episode 2, we are going to be talking about one of these core values: I believe that your body is not the enemy. I don’t even think fibromyalgia is the enemy, but that is a topic for a whole other conversation. Your body isn’t the enemy. Your body was created to be able to heal itself. It just needs the tools, the building blocks, the space, and the rest to be able to do that.

First and foremost, I believe that you and your body are actually on the same team, and you’re fighting this fight together.

[06:33]  I believe fibromyalgia is like the elephant in the parable of the elephant and the blind men. If you have read my first book, Take Back Your Life, you will have heard that parable. In case you haven’t, there is this parable where blind men come across an elephant. As they are feeling the elephant, one of them feels the broad side of the elephant and says, “Oh! An elephant is like a wall! I know what an elephant is, it’s like a wall”

Another blind man feels the ears of the elephant and says, “No, it’s not a wall at all. An elephant is like a fan!” Another blind man feels the tail and says, “No, it’s not either of those. It’s a snake!” …and it doesn’t occur to them that these are all parts of the same thing. They have no concept of what an elephant actually is, until a sighted man comes along who can see the whole picture and explains that to them.

[07:30]  I believe this is what fibromyalgia is like. We have different doctors and researchers who are feeling different areas of the elephant and saying, “Oh! It’s a central nervous system disorder.” Or, “Oh!, It’s an immune system issue.” Or, “Oh!, It’s all starting with the gut!” And with that, I don’t believe we have a full and complete picture yet of the fibromyalgia elephant.

[07:59]  That is actually one of my key philosophies: fibromyalgia is bigger than we know it is. We are only seeing pieces of the puzzle. I am very, very leery of anyone who says, “I have found the answer!” Because, honestly, I don’t believe the research is there yet. We still don’t know one hundred percent what causes fibromyalgia. We still don’t know one hundred percent anything; we see bits and pieces. That’s a big, big philosophy of mine.

[08:29]  I do believe fibromyalgia can be extremely, extremely disabling for many people. Especially, when it hasn’t been treated properly, which is why I’m such a proponent of getting proper treatment, and getting it as early as possible. It’s why this podcast is going to be all about education—so you can get the information you need to get the treatment you need.

[08:57]  As I mentioned before, I believe you can feel better. Everybody is a little bit different on how much better they can feel and what that actually looks like.

I believe that self-care is way more than the things we do. Self-care is not about massages. It’s not about eating right. It’s not about taking hot baths. It’s something even bigger and more basic than that—ore simple than that.

[09:28]  Just looking at my notes here… We are actually going to go in depth on self-care in Episode 9; Stay tuned for that. In the meantime, I just want to share that I believe it’s as simple as self-love. Self meaning “self”, plus care meaning “to care about someone” or “to love.”

I believe that self-care is really about treating yourself the way that you would treat someone you love—the way you would treat a relative, or the way you would treat your best friend or a child. That is what I believe self-love is—and I think all of the things we DO just simply grow out of that. We take baths because we love ourselves. We get a massage because we love ourselves.

[10:18]  Way more important than that is how we talk to ourselves in our heads and the words we use—the attitude we use—with ourselves. I’m super passionate about this topic, so I will stop right there or I will be spending this whole first episode just on self-care! And I’ve got that planned for Episode 9! Please, come back for that. =)

[10:38]  Another thing along these lines is: I believe that you’ll actually, in many cases, get where you want to go faster if you slow down. I know it feels like the world is moving out there so much faster than you can move with fibromyalgia. You feel like the world is passing you by. But the trick is not to push, go, go, go, go when you have a good day and then crash really hard when you have a bad day. 

"If you slow down, you'll get to where you want to be faster." Tami Stackelhouse

The trick is actually to slow down on your good days so that you have more energy on those bad days. That roller coaster will even out and you’ll be able to have more consistent energy. You’ll be able to commit to things. You’ll be able to follow through on things. People will be able to start counting on you again, and you will actually get there faster if you slow down.

[11:34]  One of my favorite stories is the tortoise and the hare. The hare runs waayy faster. The hare has his own issues, to be sure, as for why he didn’t finish the race first. But the tortoise? The tortoise just kept going, one baby step at a time, and just kept going, consistently, evenly, and just didn’t stop—which is how I have lived my life. That is how I’ve gotten to where I’ve gotten.

I’ve never done anything super big and fancy. I have definitely not sprinted. I’m that tortoise that just keeps plodding along, baby step after baby step. That is how you get there faster when you slow down. We’ll talk about that more.

[12:21]  Another thing I believe is that healing is a full-time job. Those of you who might be listening to this who aren’t working right now… *news flash* …you have a job! That job is to get better… to feel better… to focus on giving your body the tools that it needs to heal, if possible. Now, again, you may have other things going on besides fibromyalgia; you know that’s a pretty tricky topic. At the same time, that IS your job: to focus on giving yourself the rest and the healing space you need.

"Healing is a full-time job." Tami Stackelhouse

[12:59]  I believe that your world doesn’t actually revolve around your illness. The world around you is not revolving around your fibromyalgia; it actually revolves around your healing. Now, those decisions may look very, very similar. Maybe you are choosing not to go out with your friends. Maybe you are choosing to go to bed early. Maybe you stay home from the hike, or whatever it might be.

But, you can shift your mindset: “I’m making this choice because I want something better. I am staying home so that my body can recover and so that I can feel better in the long term.” That is a very different thing than saying, “I can’t because of my fibromyalgia.” Right? That mindset shift is not an easy one to make, so we’re actually going to talk about that a lot.

That difference is shifting your mindset from a victim mindset of: “I can’t, my fibromyalgia won’t let me.” To one of empowerment: “I choose not to do this because I want to allow my body the space to heal, so I can feel better.”

"Your world doesn't revolve around your illness; it revolves around your healing." Tami Stackelhouse

[14:14]  I believe that talking to somebody who understands is a healing activity in itself. It’s one of the reasons I think coaching is fantastic, especially working with a coach who has been where you are and understands what it’s like. With fibromyalgia, there are so many times we talk to people who just don’t get it and talking to somebody who does get it is just so, so powerful.

[14:38]  I also believe that, in general, most of us really do know what we should be doing; the challenge is actually doing it. Whether it’s changing our diets, changing how we manage our energy, or resting when we feel like we should rest, most of us know in our heads and in our hearts the things we could do to feel better. We just have trouble following through and actually doing it. Whether it’s because of guilt or feeling like we’ve got all these obligations… or not knowing how to do it… or your inner two-year-old stamping her foot and saying, “No! I just don’t want to go to bed now!” =)

So, yes—we all know what we should do, we just have trouble doing it. We’re going to talk a lot in the coaching aspect of this podcast about how to set your life up in such a way that it makes doing those things that you want to do easier—that it makes it easier for you to build healthy habits and create a healing environment for your body.

[15:41]  Those are my basic philosophies that you are going to hear over and over and over again in this podcast.

In Episode 2, we’re going to talk about why your body isn’t the enemy.

In Episode 3, I’m going to tell you my story. I have a friend who has met me fairly recently and doesn’t really know my story. She’s going to be interviewing me, which is going to be super fun, because she hasn’t heard the story before. This means the questions she asks are probably the things that you are going to want to know.

In Episode 4, I’m going to talk a little bit about what I believe fibromyalgia is after ten years of working with fibromyalgia patients—and even longer than that being diagnosed myself.

In Episode 5, I am going to be interviewing Dr. Ginevra Liptan. She is the author of The FibroManual (affiliate link) and Medical Director of The Frida Center for Fibromyalgia. She’s a fibromyalgia specialist. She has done research on fibromyalgia, and we’re going to have that same conversation with her about, “What is Fibromyalgia?” You’ll hear it from my perspective in Episode 4 AND we will talk to a specialist and researcher in Episode 5 about what she believes fibromyalgia is.

In Episode 6, we’re going to be talking about your role as a patient in your own health care. I think that a lot of times, as patients, we believe that our health care almost happens to us, right? Like we’re at the mercy of our doctors and our insurance company and the pharmacy and things like that—but there’s actually a lot that we can do as patients.

In Episode 7, I’m actually, hopefully—I’m working on booking this right now!—I will be interviewing someone about the research that’s been done out there on coaching and how it is helpful in helping people feel their best. I’m hopefully going to be bringing in somebody who has been doing some of that research.

In Episode 8, I am going to talk about what fibromyalgia coaching is, and what a Fibromyalgia Coach does, and give you a little bit of an idea about that. For a lot of patients, coaching isn’t even on your radar. I want to make sure that you are equipped with that knowledge, so that you know what this is as a treatment option, and how it can help you feel better.

In Episode 9, we’re going to be talking about the fine art of self-care and how you can help yourself feel your best.

[18:35]  In Episode 10—and we’re going to be doing this for every ten episodes—I’m going to be doing a special “Ask The Coach” episode, where I will be answering questions sent in by you, the listeners.

If you have questions that you would like to have answered, you can definitely start sending them in now. I know this is Episode 1, but Episode 10 will be here before we know it!

Just go to FibromyalgiaPodcast.com and you will find a place for you to submit your questions; I will answer them as part of that tenth episode.

[19:13]  Alright! Now, you have an idea about who I am, what I believe, and what the core philosophies are going to be for this podcast. I really hope that you will continue to join me here. I am so excited about the topics and the speakers I have lined up.

I did a little brainstorming the other day, and I came up with over a year’s worth of ideas for episodes! That means there is a lot of information I want to share with you!

In the meantime, and know this for future episodes, I will always have complete show notes available. I know what fibro brain is like. I know what fibro fog is like, and there may be something I mention on an episode and you don’t have time to scribble it down fast enough or you’re in your car and then you forget. No worries. Just go to FibromyalgiaPodcast.com and there will be full show notes with all of those resources and links and everything all there for you, anytime.

There will also be places where you can grab free copies of my books, if you don’t have those yet. I would love to share with you any resources I have to help you feel your best.

Alright! I will see you all back here for our next episode, where we will be talking about why your body isn’t the enemy.

See you next time!

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