Those Are Fighting Words! Metaphors Make Meaning

I’m a lover and a learner, not a fighter. After doing some reflection on a poll asked to those dealing with fibromyalgia for what name we would choose to call those with the diagnosis, I realized that I bristle to the appellation of Fibro Warriors, Fibro Fighters, and the like. The war metaphors just don’t sit well with me.

While I understand that viewing oneself as a warrior is empowering (and if it resonates with you then use it), but for me, I feel in control and strong and courageous by learning about how my mind and bodywork. Due to this outlook, I have found avenues that are working for me so that I feel like I’m able to live my life fully.

Just Words

Some will say that these labels are just words. But as I am doing a lot more reflection through meditation, counseling, and writing, I have come to realize that the words I say out loud and in my head end up defining me.

The fibromyalgia that is within me is not my enemy. I have come to believe that my nervous system has been on overdrive all of my life, right from in the womb due to my own mom coping with schizophrenia and bipolar (unknown to her until I was 16 or so). Her unstable mental health was the vibrant and awful hearth that lit my understanding of the world.

After my six weeks of intensive therapy through Mary Free Bed’s Pain Program (my blog explaining this), I came to understand and believe that the pain that endlessly roves around my body, the brain fog that weighs heavy in my head, the extreme exhaustion that forces me to lay down comes from a friend of sorts-my nervous system. My nervous system kept me on alert as a child. It was protecting me from the random emotional and physical attacks my mom would have without any warning. As I’ve explained in past posts, I learned to live on that adrenalin right up until I couldn’t function any longer last year. I actually thrived in some respects.

And so, I’ve chosen to view my nervous system as an overly protective friend who needs now to be assured that I am in fact safe and well. When I first listened to Dr. Daniel Clauw,the Director of the Chronic Pain; Fatigue Research Center at the University of Michigan, describe central sensitization/central pain disorder, I felt his metaphor for an amplifier turned on high really explained the reason for the fibromyalgia and interstitial cystitis pain I have.

Certainly, the way is not clearly marked.
These metaphors create images in our minds; connecting what we know to better understand those things that aren’t as understood to us. So, for me to understand this part of my life living with fibromyalgia, I have used the term journey. For the most part, I feel it fits the mentality I’ve taken. It allows for discovery, going into unknown territory, taking chances, having companions with me along the way, allowing guides to show me the way, figuring out what works best for me in this new situation or place that I’m in at this moment, etc. Journey to me involves work, courage, perseverance, hardships, discoveries, and so much more.

I will admit, there are times where I feel like I’m going through more of an odyssey-full of hardships and trials. Sometimes moving forward in a positive way. Other times stymied by a flare that brings my progress to a standstill or even pushing me back to take shelter. Often, it’s felt like more of a quest -constantly searching to learn and to accomplish my goal of living as fully as possible.

Humorous image here, but when I’m down and out,
it’s not funny in the least.

The other day, when talking to my daughter, she reminded me after a time of doubt and discouragement, that this journey isn’t going to always go on the route I’ve chosen. Unexpected exhaustion hits in the middle of me having a great time. The fog rolls in, and I can’t see or think clearly. Pain has led me into a dark alley and left me whimpering and doubting that I can continue. This too is all a part of my unchartered journey.

Metaphors Steer Our Thinking

For each of us facing a chronic illness of any type, taking time to really think about the metaphors we use is important. Also, that what we use needs to connect to who we are and want to be. In the medical research article, “Metaphors We Think With: The Role of Metaphor in Reasoning” published in Public Library of Science Journal,researchersPaul H. ThibodeauandLera Boroditsky state that through the five experiments they performed, analyzing the role of metaphor and mindset, they found, “…that metaphors can have a powerful influence over how people attempt to solve complex problems and how they gather more information to make “well-informed” decisions.”

In addition, they discovered that “…the influence of the metaphorical framing is covert: people do not recognize metaphors as an influential aspect in their decisions.” And so, it is essential that we think about the words we use to describe our illness and our relationship to it. Those words impact not only how we view our situation but also influence how we chose to react to it.

Other Possible Metaphors

In the article From Battles to Journeys: Changing How We Talk About Illness and Cancer” byVanessa Milne, Jeremy Petch & Maureen Taylor, the list a few different ways we can think a disease. In the article, they talk about a woman who referred to cancer in her body as cells that were out of tune with the rest of her body’s cells. This got me thinking.

Needing to be Tuned-This week, I started taking ukulele lessons. Awkwardly, I tried to get my fingers not only pushing the string down fully but on the correct fret and not lazily touching the other strings. I have not yet gotten this to happen, so when I strummed the four strings in tandem with my teacher’s notes, mine sounded sour and totally out of tune. It seems like that’s much like my body and mind, currently. It’s awkwardly trying to strum a tune, but it’s really out of tune.To my surprise, I’ve been relishing my time in meditation more and more. I feel like it’s bringing my mind and body back in harmony with one another.

In the article, they explain that often the metaphors come from a personal connection. Which makes sense, metaphors compare two unlike things-usually something one is really familiar with to something that is difficult to explain. So, your own life experiences could bring you a meaningful metaphor that helps you to explain and cope with illness.

Here is a list from their article (linked here):

  • Dancing
  • Thriver (vs survivor)
  • Playing a chess match
  • Running a marathon
  • Weeding a garden
  • A persona (the illness becomes a character to interact with)
And a few more I found:
  • A building project
  • A bike race (Lance Armstrong used this)
  • A mental or physical match (similar to war phrasing but less violent)
  • An unwelcome lodger
  • An alien invasion

Further Food for Thought:

What is/are the metaphor(s) you use when thinking or talking about illness? Is it serving you well? Does it fortify you? Have you ever thought of the language you and your health advisors use?

Thank you for visiting my blog today.

I am committing to posting once a week on Fridays. However, as you know, my new normal means that some times I have to listen to my body and am not able to follow through as planned. Thank you for your understanding.

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Up in the Air: Struggles with Flying, Fibro Flare, and Acceptance

Up in the Air: Struggles with Flying, Fibro Flare, and Acceptance

back ground of blue-whte fluffy clouds with airplane aisle with passengers seated, to the right in a transparent dark blue cloud shape  in white text is the title. Underneath in white font is the website and teal waterlily logo.
Photo by Skitterphoto
While I have appreciated flying with Delta
Airlines, the long walk to the back of the plane,
being stuffed between to bigger men,
three tight transfers, and mysensitivity
to all things in motion,
made for a very challenging trip.

This week, my husband and I splurged on a ticket for me to join him in Pasco, Washington. Kelley does contract work that causes him to travel about one week each month. Being I had never been to the state of Washington and he was going to be gone from Monday to Saturday, we decided that I would come along.

Not Prepared

I blame myself (and my brain fog) for how the trip has gone. After a pretty active and clear-headed week, I found myself very tired and foggy last Saturday. Being we’ve always packed a day or night ahead of any trip, I didn’t even consider planning ahead. BIG MISTAKE! I really haven’t been on any long travel trips since before my diagnosis. The last big trip (driving from Michigan to California and back) was two years ago and the beginning of the unusual, constant, deep pain roving all over my body.

And so, Sunday, while not horrible, found me not at all motivated or clear-headed when I packed just before bedtime. My belligerent body, seemingly because it knew we’d have to get up at 4 am, decided then that I didn’t need to sleep at all. And so, I was awake and ready to go by 4:30; however, my zombified brain didn’t consider that I didn’t have my purse with me until we were nearly at the airport, one hour away from home. Of course, no identification meant no boarding.

screen shot of text between myself and husband.  Husband sends can't believe it emoji in response to my finding my purse in the back of the car.
My text-conversation with my husband. Me from home. Him in the airport waiting to take off for Seattle, the flight we both should have been on.

Good News, Bad News

Being we didn’t have flight insurance (something we may have to bite the bullet and pay the extra fee next time), we didn’t expect that I would be able to go. However, Delta, being overbooked for that morning’s flight was asking for volunteers to take the later flight. My husband was able to get them to add me to that ticket at no extra charge to us. So, off he went, with me driving home to better prepare for my travel.

It was a bit of a knuckled drive home due to icy conditions on the roads, and I was struggling to keep awake. I felt like I was in some out-of-body state. However, I made it home safely and was really looking forward to cuddling back into bed for a few hours of sleep. Determined to get my purse into my backpack so that I had everything ready for later, I looked for it hanging on the hooks in the mudroom. Not there… So, did I leave it in my car (a bad habit I’ve gotten into lately)? Nope. Where could it be? Then, it dawned on me. I rode in the backseat of my husband’s car(the one we took to the airport that morning)with my granddaughter three days ago when we took her to a water park for the day. I walked meekly to the garage where I had just parked it and looked into the backseat; sure enough, there it was.

Even so, I really didn’t let it get to me. I was actually thankful for the extra time to myself to get some sleep, do some yoga, and just rest, knowing that I’d be stronger for the flight the next morning.

Seated in the airport, image of knees in black pants, with black backpack and hot pink fuzzy half-moon headrest.
Feeling confident and prepared,
I started my Tuesday morning
pretty alert and energetic.

Let the Games Begin

I felt ready. Starbucks’ non-dairy splurge coffee made me feel like a pro. It wasn’t until my short flight to Detroit that I really looked at my tickets. I was arriving at A5 four-minutes before boarding started for my flight to Salt Lake which was leaving from gate A-65. Hmm… I realized that I was going to have to sprint. I made it and had time to pee before getting on because I was in one of the last seats on the plane (beggars can’t choose better seats). As I carefully walked down the narrow aisle, guarding my backpack so as not to hit anyone, I saw my seat, middle-stuffing between two bigger guys. Luckily, I don’t mind smaller spaces, or so I thought.

Boy, I now realize that being confined without ways to stretch really isn’t good for my tightly-wound body. It was a long four and a half hours. I had chosen not to travel by myself while on Bonine for my motion-sickness and forgot my ginger chews, so as the flight progressed, I began to get a strange dizzy-headache that then lead to a hardball forming in the pit of my stomach. During the last 45-minutes of travel, I did nothing but work on closing my eyes and slow breathing. I was glad to get off without having to use the little paper bag provided in the seat pocket in front of me.

The last connection, again a very tight-transition time, caused me to have to get directly on the flight to WA. I was in the very last row of this puddle-jumper airplane and knew from the get-go that it was going to be a rough trip for me. I didn’t open my eyes until the wheels touched down an hour and a half later. Meditating got me through the time without throwing up, but my body was one big knot, and it took everything I had to get my suitcase and find Kelley waiting for me just outside the airport’s doors.

Image of a hotel room with sitting room, purple yoga mat on the carpeted with purple Coreageous ball on it.
A wonderful room to hang out, write, read, and do yoga.
Unfortunately, I’m still feeling like I have
motion sickness.

Not Feeling the Acceptance

I’m struggling with acceptance.  Today is the third day of feeling like I’m still motion-sick with added muscle pain literally everywhere.  I’m feeling so weak, dizzy, light-headed, and nauseous in addition to aggravating, whimper inducing pain at every point of my body. I really had wanted to use this get-a-way to write, read, and practice meditation and yoga while Kelley went off to his job. While I am doing some of that, it’s coming hard.  I’ve been feeling a bit defeated in the whole practicing of acceptance. I have this gnawing doubt that my life with Fibro will never get better and that going on Cymbalta just maybe my only option.

But still, I plugged on the past couple of days searching for anything that proves I’m on the right path of rewiring my brain through meditation and mindfulness.  I went down a neuroplasticity and meditation Google research path that took me to an open door of hope.

A close up of an 8 brown rock cairn on a beach that is blurred out.
Mindfulness-Based Stress Reduction by
Jon Kabat-Zinn is a scientifically
researched 8-week meditation class
that has shown great results for
people with issues like chronic pain.

Have You Heard of MBSR?

I hadn’t heard of Mindfulness-based Stress Reduction Therapy until I stumbled on the research paper titled “Mindfulness- and acceptance-based interventions for patients with fibromyalgia – A systematic review and meta-analyses”. The report talks about how participants in 8-weeks of meditation classes of 30-40 minutes a day caused noticeable, positive changes in their brains. This led me to find the developer of MSBR, Jon Kabat-Zinn (who I actually have read his book Wherever You Go, There You Are).  I ended up watching a talk he gave to Google employees on their lunch hour: Mindfulness with Jon Kabat-Zinn.  From there, I found various ways to participate in the 8-week course, but all of them would cost a decent amount.  Then, I stumbled on something amazing!  The course is offered online for free from Dave Potter, a fully-certified MBSF instructor.

I started my preparation for the 8-week class today.  Instead of a printed notebook of the materials as is suggested, I’m creating a digital version.  So far, I have it ready through week 1.  Feel free to make a copy of what I have or follow along with me as I add the upcoming weeks in as I go.

Click arrows to go through the pages.  Some pages have links to videos and PDFs.

I’ve enjoyed the meditation that I’ve done through Calm and Jeff Warren, but they tend to be short sessions. They’ve given me the thirst for more, and I think this is a good next step.

Trip Home

In my research, I have also learned that my impromptu travel planning and packing is not the best when you have fibromyalgia. I’ve found a few helpful articles by fellow spoonies that I will use for this home trip and those to come. Also, I’m going to take Bonine which will make me really sleepy, but with Kelley leading me around, I should be okay.

Do you have any travel tricks that make long journeys more bearable and less flare causing? Have you tried MBSR or meditation to help with your symptoms? I’d love to learn from you.

But….HOW do I Practice Acceptance (My Super Power in Development)

Image by John Hain from Pixbay

Today in yoga class, we had a good giggle. Just as we were to stretch into our final rest pose, Shavasana, the drill of a maintenance worker started up loudly in the building next door that shared the long side wall of our classroom. It juxtaposed against the calming, meditative music now taking a backseat to the jackhammer being amplified in the space. Our teacher, after a few jokes, reminded us that as we began to breathe and set our minds to meditate, we had a great opportunity to accept what we cannot change and continue on.

Imageby windyschneider from Pixbay

I’ve spent this first week of January with the intention to purposefully practice acceptance of the things I cannot change. What I know is that this is not an innate part of my nature. Neither is it something that I can just decide and then I am. However, as this little, somewhat silly opportunity to accept what came up, I found that I could do it without much effort due to the groundwork I’ve laid these past few months with brain plasticity and rewiring.

One surprising tool that has really helped me is the Calm App that I have on my phone. I had gotten it to help me fall to sleep. Several people I knew had recommended it for the music and stories which is what I tried first. These past two weeks, though, I began to do the beginner 30 days of meditation training with Jeff Warren. At 4 days in (Inner Smoothnessepisode), I learned a new word-equanimity.Its definition is mental calmness, composure, and evenness of temper, especially in a difficult situation.Learning to not balk or run away from uncomfortableness, but be able to literally (and figuratively) sit with it.

Meditation with Jeff Warren

The thing that has helped me the most was how he guides to “Notice your thinking. Every time you catch yourself thinking or visualizing and can notice as if from a perch outside, you are strengthening your focus and equanimity muscle.” And so, I’ve been doing this each day when I meditate in bed as my husband is sleeping next to me. He snores. So, it could be distracting, but I’m allowing it to be. Or when Willow, our 15-pound long-hair cat decides to nestle in the area that really makes my leg feel uncomfortable, I allow it and maybe eventually move my leg so that he leaves.

I am practicing to notice my thoughts (self-talk and/or images) that come up. I notice if it’s a judgment, a plan, a worry, a bracing, a sinking into the past. I label it and let it go. Jeff’s explanation that the thoughts will happen and that the more we notice, label, and release these thoughts, the stronger we become in doing it. And then, as we practice doing this during these times of meditation, we then find that we can do this when we go back into our day.

And so, I am beginning to find some positive changes. First, I look forward to meditation time. As I’ve stated before, I have ADD and have always been a doer, so being able to enjoy this is miraculous. It used to be torture for me. Second, and the most amazing, is that I’m beginning to do this when something uncomfortable or even painful hits.

Last week, I had a bought of nausea, dizziness, and fatigue that started with a headache upon waking. It stayed the whole day and into the evening. That evening, though, was a special night. We had tickets (from Christmas) to go see a Michigan State basketball game. I got dressed to go, but I could just feel that the two-hour drive there, dinner, the game, and drive home, was going to be beyond what I could handle. I was bummed.

But, I did not sink into a deep sadness, which has been my norm when the fibro symptoms have caused me to cancel. I was able to be okay with it. And my quiet night alone ended up being fine.
I know I have a long way to go with this, but I’m really seeing positive changes already. I feel that I am already becoming flexible and resilient. I’m learning how to handle this life (even with the symptoms of fibromyalgia) with grace and ease.
Have you tried meditation? If you’re anything like me, this seemed a bit silly, maybe even a bit voodoo-ey. I’m finding now, that it’s a concrete practice that’s rewiring how I react. I will continue to explore this topic of acceptance in upcoming posts. I’d love your thoughts, questions, concerns, experiences to help me in my exploration.

Acceptance is my Superpower- Living Fully with Fibro

Accepting that I will have pain, allows me to
experience it without angst, going forth as much
as possible to do the things that bring me joy.

I am a problem solver. It has served me well in my 55 years of life. However, I have had to realize that I also am a self-appointed controller and fixer of all that I see. This means my problem-solving mode is going 24/7, even in my sleep. This is not healthy.

While my take charge and fix things instinct has been helpful throughout my life and career as a teacher, it’s now one that I really need to turn off. Feeling like I need to fix things is a form of not accepting my life. And that resistance to my present, always striving to fix and be better than things are, leads to anxiety, sadness, discontentment. What I need this new year is contentment for the life that I have here and now.

Now, I don’t mean I plan to sit on the couch and watch life go by with a smile on my face. I just mean that I am going to accept the things that life brings me, just as they are. Accept the truth of my life and situation. I will feel the pain (literally and figuratively), however, I don’t have to rile against it. And by letting go of the struggle, I can be relieved of the suffering.

So, I feel the sadness or pain without trying to change it,
allowing it to be because this is what is,
and then I move forth.

Acceptance is Action

This past summer, I began Acceptance and Commitment Therapy with my pain psychologist at Mary Free Bed Rehabilitation. It was hard to wrap my head around accepting the pain, brain fog, utter depletion of energy that fibromyalgia had brought into my life. The fight against these restraints wore me down until I couldn’t function any longer. Many of my friends have even commented on how pro-active I was being in dealing with this foe. However, the constant search and trying new ways of healing is frustrating, exhausting, and in the end, taking up too much of my precious life.

So, I will accept that I have fibromyalgia. I will listen to what my body and mind need. I will meditate, move and nourish my body, and focus on living purpose-FULLY (see my last post). With the tug-o-war rope dropped, I will breathe into my present whether there be pain or no. I will accept and love myself instead of seeing her as incomplete and wanting.


Acceptance is my super-power, but it needs developing through continuous choosing it and then practicing it. Yesterday, I woke up pretty alert. I felt rusted all over with noticeable pain in my left hip, but I was excited to write. After writing most of this post, my husband suggested we go snowshoeing. The snow was a fresh covering of glistening white fluff, and soft flakes continued to float as if the world was a snow globe recently shook. Knowing we would be having our 4-year-old grand-daughter overnight for New Year’s Eve, I was hesitant.

However, getting out in nature and exercising are two of my five priorities for living purposefully, so I agreed. While outside, trailblazing through the light snow breathing in the crisp, invigorating winter air, I felt a glimpse of myself before Fibromyalgia. Last winter, I spent much of it in bed and missed going for these adventures. Being we can go out our door into the woods, we did a 40 or so minute trek. By the end, I could feel my hip getting angry. So, when I got home, I used the hot pad and worked on breathing through it. I also decided to take a nap before I had to turn on grandma-mode. Accepting the pain allowed me to have fun I haven’t done in a couple of years; accepting my limitations led me to rest and repair.

My Kryptonite

However, all was not hunky-dory last night. I was up much of the night with pain in my arms (as if I had rock climbed all day) as well as both hips fighting to take turns as to which pain was more intense. This is where my resolve gets weak. I tend to get a bit panicky and frustrated to tears at times like this. However, I’m proud of myself. I belly breathed for 20 minutes, reminding myself of the fun we had through positive, mantra-type repeated phrases. I used the heating pad, did some myofascial release with the yoga ball, and watched some laugh-out-loud comedian clips on YouTube (thank you, Michael McIntyre), finally falling asleep around 3am. This morning, I woke up feeling unusually energized. I’m not saying it was from last night, but I really was surprised at how good I felt.

And So I Commit

This next month of entries, I’ve decided to really focus on acceptance: how it affects the brain, how it affects mood, and how it ultimately affects a life. I’ll be using my own journey by practicing acceptance as well as recent research and others’ stories to hopefully show how to do this and its impact.

What does acceptance mean to you? Does it seem like giving in? Does it feel impossible?