Friday, February 28, 2020

What's a Full Life? Quest to Living FULLY Despite the Pain



Gazing into the night sky always brings
a sense of wonder and reflection for me,
What is it that I'm aiming for?
 What exactly do I mean by living FULLY?
There was a serenely clear, winter night sky this past Sunday in Michigan.  My husband and I dashed through the chilly air to soak our aching bodies in the hot tub looking over the lake. As we sat down, we tilted our heads to view the brilliant stars through the pine trees that looked like they'd been painted on the deepest of black canvases. (The free-to-use photo above, while beautiful, does not capture the large, bright stars from that sky.) We sat there in still, hot water so that the jets' noise did not disturb the serenity.  This is a FULL moment that lingers in my memory as I write this.

As a FULL life Draws to a Close


Last week, I spent in Arizona, with my husband and his mom.  I tease him because her first name is Katie (and so is mine).  His response to the "momma complex" insinuation is "Her name is MOM to me!"  

We flew from cold and snowy Michigan (19o F or -7o C) to sunny, blue skies of Sun City, Arizona where she has lived for half of her life. It was a Christmas present, us coming for a visit and taking her to a play.  However, it ended up coming at a particularly sad time.  Her baby sister passed away two weeks before, leaving Katie the last of her nine siblings. 

Talk of what now and the future of her finances, home, possessions came in and out of our thoughts and conversations all week. Talking about the past, her life with Ed and their children in Michigan, her life with Paul and his children in Arizona, memories of her sisters who all had moved to Arizona one after another, these all have made Katie's life FULL. So many stories, experiences, troubles, joys, and accomplishments in her nearly 83 years of life. 

While thinking about a life coming to a close is not comfortable, I have come to think that it must be talked about with those we love.  Reverie and reflection are gifts for all those who take part. These memories link us to one another, the past to the present to the future. The hurt and the happiness, the hopes and the fears, the weakness and the strengths are all things we share and can learn from.


Boxes FULL of Life


One thing Katie asked me to do is to help her go through the photos she had gathered, loose within several boxes stored in her cupboards. There were hundreds and hundreds of photos. Many very faded and most not labeled for who, where, or when. I'm doubting many had been seen beyond the one time after shuffling through the stack out of the developer's envelop.

I've always been the curator of family memories.  I inherited my mother's photos, then my grandmother's photos, then my father-in-law photos, and now I'm organizing my mother-in-law's photos so that her children each get these special moments in time. Going through photos makes me think of all these moments that so often we don't even recognize as important.  Especially in this day and age when we snap photos constantly, never to be printed or even viewed by anyone.


When I was an impressionable teen, I watched the iconic play Our Town by Thorton Wilder. If you've never seen it or read it, it's a must in my opinion.  In the scene after her death (spoiler), the main character Emily says, "Does anyone ever realize life while they live it...every, every minute?" With the response from the Stage Manager a very raw but real, "No. Saints and poets maybe...they do some." This hit me hard at the age of 14 and has played again and again in my thoughts as the past 42 years have scrolled past. 

So What is a FULL Life


What is it I'm aiming for in this life with fibromyalgia?  Just to have less pain? No pain? To have energy and clear thinking? To have accomplishments? Money? Fun? Tastes? Travels Experiences? 

I have come up with this and am putting it down here for me to remember: A FULL life, KATIE, is to REALIZE your life WHILE you're LIVING it. (As much as humanly possible.)  While I won't have a photo to capture Sunday night's perfect starry sky, or of the ache in my heart when my daughter tells me she's struggling, or the joy I have when my son pulls me under his wings for a hug, or the love I have when my husband reminds me to grab my coat as we leave the restaurant at which we just had a wonderful meal and conversation, or the warmth of my granddaughter's hand in mine, or my mother-in-law's eyes as she lovingly looked through her precious memories, I can stop at each of these times and see, touch, hear, smell, and feel, taking a moment to recognize this FULL moment-full of life whether happy, sad, good or bad.

Despite the Pain or really WITH the Pain


I am living a FULL life. Truly realizing and experiencing each and every moment as much as I am able.  The work I'm doing, through meditation, therapy, yoga, writing, etc. is helping me to be more aware and more reflective. Next week, I'm starting a special type of therapy to help those with complex trauma, EMDR.  I hope to bring my past difficult moments that gave me many qualities of strength into perspective, reframing them for what they are-a piece of this FULL life. Living FULLY with the pain and everything else in-between.


I wish for you a FULL life, too.  What does that mean to you?  I'd love to hear your thoughts.


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 sometimes 
I have to listen to my body and am not able to follow through as planned.
Thank you for your understanding.









Friday, February 21, 2020

Going from PAINfully Living to PainFULLY Living

Due to spending the week in Arizona visiting my mother-in-law, I didn't get to write a new post.  I've decided to repost my first blog entry with a few updates this week.  I have two other posts in the works, so see you again next week Friday.

This is the beginning of
my journey with fibromyalgia. It's been
one of many ups and downs, turns and twists,
but ever moving forward, living
my life as FULLY as I can.

June (2018), as my husband and I drove across the country from Michigan to California in our Ford Escape, I began to notice a change in me.  It wasn't quite a new thing, but a new intensity and duration.  My muscles ached deep, deep within me, gnawing from the inside out.

This is the beginning of a major life change, a journey of sorts that has birthed a new self.  It's been hard (almost impossible at times) and is ongoing; however, I have come to be thankful for what it's brought me to.



Why I Have Chosen to Tell My Story Publically

Being a teacher and a lover of learning, I have done a lot of research.  Seeking insight, knowledge, and help from every place I could find it.  This blog is to share my path on this journey.  One:  Just so I can have it recorded somewhere.  Two: Hopefully help others through this sharing.

I have come to witness and understand that Fibromyalgia comes in many forms with a variety of symptoms and a variety of ways that people choose to handle it.  I have learned from others' stories; however, no one that I've encountered has taken the path I've been on.  I feel that by sharing what I've gone through and am going through might give insight to someone else.  I don't think anyone will have the same path as you, so gleaning from many, may lead you in the direction you will want to go.

I have chosen to accept the pain by managing it as much as possible. Sounds easy, right?  Just manage it. This blog will go into the details of how my life has been impacted, some of the possible reasons Fibromyalgia developed in me, and how I am managing it.  I have gone from PAINfully Living to painFULLY Living since my diagnosis in November (2018).




I will share as best as I can through my words the raw truths that I've been living with.  I don't want to sugar coat anything.  Fibromyalgia is an all-encompassing, chronic disorder: physical, emotional, and mental.  To share my path will mean sharing it all.   It will be cathartic for me and hopefully helpful to some.

As of today (2/21/20), it's been a bit over a year since my diagnosis.  I have learned so much about myself in this journey. I have learned a lot about how fibromyalgia affects me and what does and doesn't help me live FULLY despite its presence.  I continue on the path, open to what it brings me. Thank you for coming on this journey with me.




What journey are you on currently?  Do you find it helpful to reflect and share your story?  Do you find connection learning of others' paths and choices?  


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 sometimes 
I have to listen to my body and am not able to follow through as planned.
Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email






Friday, February 14, 2020

Mind Over Matter: 21 Days of Meditation


Monkey Mind is a Buddhist term meaning "unsettled; restless; capricious; whimsical; fanciful; inconstant; confused; indecisive; uncontrollable".

Have you ever noticed your mind's thoughts as you're driving alone in your car?  Or as you're lying in bed trying to fall asleep? Really, any moment of the day, I can find my brain zipping from one random thought to another. Like a monkey swinging from thought branch to thought branch. My yoga teacher termed this as having a "monkey mind."

Thoughts that bounce from one random thing to another tends to be the norm in this day and age. I have found that while I actually thrived on that mentality for most of my life (feeling like I was more accomplished juggling all these thoughts into some sort of coherence day in and day out), I now am so overwhelmed with my foggy fibro mind that I find myself frozen in anxiety.

The more I study about how the mind works, the more I am coming to understand that I have been yanked around by my thoughts for a good portion of my life.  In the past few years, I found myself being physically pulled from one thing to another right along with my thoughts which lead me to a state of panic. In the journey to rewire my overactive nervous system, I have come to realize that meditation is the missing link. As a meditation teacher and researcher Dr. John Kabatt explains, “Most people don’t realize that the mind constantly chatters. And yet, that chatter winds up being the force that drives us much of the day in terms of what we do, what we react to, and how we feel.” 

21 Days of Meditation

I've been meditating every day for 30 minutes at least once a day for 21 days. As explained in my post Up the Air: Struggles with Flying, Fibro Flare, and Acceptance, I am going through the Mindfully Based Stress Reduction 8-week course online through https://palousemindfulness.com/.  David Potter shares this free course, based on Dr. John Kabat Zinn's program at UMass Medical School.

Dave Potter is a certified Mindfulness-Based Stress Reduction instructor 
and received his training through UMass Medical School where
 Jon Kabat-Zinn founded the Center for Mindfulness. 

The program's format makes this teacher's heart smile.  It's easy to understand and all the resources are accessible and meaningful.  While it's all on-line, everything other than video and audio files can be printed to keep in a binder (which is what Dave suggests doing).  I have made a digital binder that I will share here.  It's view only, but you could make a copy of what I"ve done.  I'm finishing week-3.  I decided to do week-2 twice because I had a flare during the first go-round and felt it would be beneficial to continue it for one more week.




You may click through the pages of 
the digital notebook that I've created.
 I am adding on as I go through the program.

Course Overview:

Week 1: Simple Awareness




I watched all the video links basically in one sitting; I was excited to get started. I printed out the formal practice and informal practice so that I could begin.  The first week David talks you through a guided body scan.  There are two versions one of 32 minutes and one of 20 minutes.  However, the research that showed good results was at least 30 minutes a day, so I did that one.  

At first, I did the body scan in my bed.  I was familiar with doing the scan because of previous experiences during yoga classes and other video-guided body scans. The main difference I found from this one was there was no mention of relaxing or releasing, just noticing how you were feeling.  It is suggested that you do this and all meditations when you are alert, so if you're really ready to drift off, this would not be the way to go about it.  

I did have a couple of sessions when I would blank out on whole sections of the body.  I would be "focusing" on my ankle and the next thing I notice I was to be focusing on my belly.  So, those times, I didn't count towards my half-hour.  I really enjoy the laying when I'm meditating.  I find I don't grip in my body as much.  Also, I used a blue-tooth eye mask or flax-seed eye pillow to help my eyelids relax. (Does anyone else have restless eyelids?) 


I purchased both on Amazon.  I like the sleep-mask for listening
to something without bothering someone else.
It's my new favorite thing for air travel. 
The flax seed eye pillow is perfect to rest my eyes,
but only stays on if I'm lying flat.
The biggest take away I got from this first week was that it's natural that our brain goes off every couple of seconds.  So, instead of thinking I'm weak and will never be able to do this, I was told to see each time I noticed that I was thinking about something else to see that as a brain sit-up.  Each noticing and bringing back the focus to my breathing, choosing to focus on my nasal passages as it comes in and out, is strengthening that brain pathway.  This was a HUGE revelation for me and really helped me to enjoy the noticing and coming back to focus.

I did the raisin meditation (which is the slowest way to eat a raisin) about half-way through the week. I found the mindful eating videos in the extra resources very interesting being I feel my eating habits are long ingrained in me through a life-time of school rushed lunches. I also began to realize that I can do anything mindfully.  I've been working on applying that, especially with my driving. (See my post Am I Strong Enough?)

Week 2: Attention and The Brain



This week (which I did twice) was an introduction to sitting meditation.  Which was difficult for me at first because it involved sitting up.  I first did it cross-legged (not a requirement at all) on a chair, but then decided to set up my area downstairs where I do yoga.  I have a bolster which I'm using to sit on (again, not a requirement).

I followed the same way of r
eviewing the videos and articles as in Week 1.  This time, some of the videos that David includes from YouTube lent me to explore other very interesting videos by meditation gurus such as  Shauna Shapiro (Ph.D., is a professor at Santa Clara University, a clinical psychologist) and Sara Lazer (Ph.D. Neuroscientist of yoga and meditation).

A few of the biggest takeaways from this for me so far, is that meditation actually changes the shape of your brain.  It shrinks the amygdala (the fight or flight part of our brain) thus decreasing stress.  Yes, thank you!

Also, I am becoming more comfortable in an upright position when meditating; I'm slowly learning to let go in my body.  I'm even having to actually work on not controlling my breathing. The one thing that is automatic in our functioning, I am trying to control.  After two weeks, the good news is that I am finding moments of pure letting go.


Week 3: Dealing with Thoughts




This week, I have started mindful Hatha Yoga.  This is actually what I practice at the yoga studio I attend Branch Out Yoga.  Joan, my teacher, emphasizes the breath and focus on it during each asana.  However, David requires that we do the two provided videos led by Lynn Rossy, Ph.D.  

Yoga is my jam, so I have been really happy to do this part. My teacher says, "Everything is yoga if done mindfully." So, the idea that we can move mindfully to create an integrated body and mind. One of the harder things I have to deal with is the JUDGE in my mind that comes out as I do yoga.  I strive often to do poses correctly or push my body to get to where it "should" be. 

I'm learning that striving and pushing is not the goal here.  I want to accept me where I am on this day at this moment.  The Judge and Critic are real but not my truth.  I can look at it for what it is, a thought bubble.  By noticing it and labeling it as "Thinking" or "Judging" and then coming back to the senses of the breath and movement, I find that I'm getting stronger at letting them go. 



And so, three weeks in, I'm hopeful.  I had a test today, and I didn't fully pass, but I think I did better than I would have before meditation.  After doing a wonderful sitting meditation, I went to write.  However, my husband was working on getting our tax information ready.  It's more complicated with our retiring and our creating an LLC.  I am the techie for the company.  I created (using YouTube tutorials) a spreadsheet that keeps track of our expenditures, earnings, mileage, and costs for the office space. 

So, when he wanted my help to get it ready, I began to get overwhelmed pretty quickly because he wanted the set up to be different than I had it.  I could feel myself getting roiled up and ready to be snippy with him. However, I worked on remembering the feeling I had just a bit before while meditating and then worked on breathing while I worked on the document preparation. I didn't snip and we got it done without us getting upset with each other.


Describing meditation is difficult.
I guess my best explanation is
 focusing on the senses of the body
in the present moment without getting
swept up in our own story.
Have you ever tried meditation?  I'd love to hear about your thoughts and experiences.  I will share my journey further down the line.  (Boy, I wish I had a brain scanner!)


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 sometimes 
I have to listen to my body and am not able to follow through as planned.
Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email



Friday, February 7, 2020

What's Good Enough?-Acceptance to Eliminate Shame


My counselor gave me this question to think on 
after we discussed my recent two-week fibro flare.


So, I have a confession, it's one I'm making to myself and to you if you're reading this.  I am a fair-weather accepter.  I have been working on acceptance of my life with fibromyalgia.  To get there, I have been meditating every day and have gone back to counseling.


I accept that I need to be mindful of my body's needs.  I accept that my days-in and days-out look different from what they had been. I accept that if I'm going to do something, I need to plan ahead by getting rest or packing extra things to bring with me. I accept that I need to bow out sometimes.  I accept that I have to let go of doing everything I'd like in one day. I accept that I need to ask for help.  I accept that I spend much of my day developing my health.

However, after a couple of weeks in a fibro flare, feeling like the power to my brain and body has been cut off and the joint pain of elbows, hips, and knees turned on high, I really, really got discouraged.  Eight days in, I used the word depressed for the first time ever when telling my husband over the phone how I was doing.  

The next day, I went to my counseling appointment.  One thing that stuck with me, as far as acceptance is concerned, is that I've been accepting when things are going fairly well, and during this time, I was frustrated, angry, sad, and depressed due to not being in control at all.  I mean, I've been doing all the good things: yoga, meditation, belly breathing, gratitude, etc., so why this flare for this length of time?

I am coming to understand that I have great anxiety around not being in control.  As I've explained, my childhood was wildly unpredictable and fully out of my control.  Even then, I would play the "mother" to my mom and sister, trying to control the environment and make it all better.  Then, in my adult life, I worked in a field where my classroom was fully under my control. As teachers were taught to think that we could create an environment and expectations that would keep things predictable and moving in a good direction.  And at home, with my own family, I practiced the same mentality.

As I'm beginning to feel better the past couple of days, I began to think about what my counselor asked me to figure out. "What is good enough?" Meaning, these down days, I tend to beat myself up because of everything I want to be doing and be a part of that I'm not. So, instead of that, I would set up my own standard for what is good enough for me. Because it is me alone that is judging me. My norm has always to know what is good and then shoot for higher than that, so not reaching that highest level means complete failure. For the first time, I grasped that there is a good enough level and that it's okay for me if I chose to finally accept it.

Initially, I was thinking it meant I had to determine what was the minimum of things I did that would be acceptable on a down day? Thinking that if I had to lay around, I should have certain things that would make it more enjoyable and use that as my guide of "good enough". 


Down Day List of Special Things only for this time: 


  • Comfy but stylish PJs or outfit, rather than the leggings and beat up sweatshirt I tend to wear because I then feel ugly on the outside and inside.
  • Special books to read or listen to that make me feel like it's a vacation choice
  • A yummy tea in a special cup so I can pretend I'm at a fancy bed and breakfast 
  • A planned menu or special treats that will help me curb from eating the junk I tend to get into when I'm feeling down.
  • Movies, TV shows, comedy shows, and podcasts I could watch or listen to. 

Quickly, though, I realized that while having these things ready would be helpful, I couldn't quantitate "good enough" by what I did. Literally, by Googling "what is good enough", I came to find a talk by Brene Brown whose book I saw sitting on my counselor's shelf but didn't know of her myself. I watched her famous YouTube Ted Talk on Vulnerability, her interview with Russel Brand, her talk about shame, and then her show The Call to Courage on Netflix, all in the same evening. 


Photo by geralt
Shame for not being healthy fuels my struggle with acceptance.

Something she explained about shame really resonated with me. "I define shame as the intensely painful feeling or experience of believing that we are flawed and therefore unworthy of love and belonging – something we’ve experienced, done, or failed to do makes us unworthy of connection." I realize that I am ashamed of myself when I'm not healthy. I feel like I'm not doing all that I should to be well. I'm not good enough to figure this out.

I'm currently reading a book, GET BACK INTO WHACK by Sue Ingebretson, who describes her journey with fibromyalgia. She talks about how she came to manage the symptoms and healing. For me, this is what I expect of myself.  I have been diligent in being proactive. And so, I now understand that I feel shame for this flare because it means I didn't do enough or did something wrong. I feel shame for letting my people down.

And so, I realize that I have not accepted that I am vulnerable. I've been determined to outsmart this syndrome. And so, I'm understanding that I am vulnerable, but in the words of Brene Brown, “Vulnerability is not winning or losing; it's having the courage to show up and be seen when we have no control over the outcome. Vulnerability is not weakness; it's our greatest measure of courage.”  And by choosing how I respond to these times with self-acceptance and self-love, I do have control over these down days.

My Down Day "Good Enough" barometer:

  • Did I do what I was able to do? 
  • Did I listen to myself and my needs?  
  • Did I appreciate this day that I was given?
  • Was I present in my day?  
  • Did I relish in what I was able to do? 
  • Do I notice what I did (and not what I didn't) do? 

I understand that if I can use this through acceptance, I then release the shame (and all the bad feelings that go along with this) that just heighten the flare into something unbearable.

I'm not giving in.  Just allowing myself to have honor in these down moments. I am enough. I am grateful right now because I am alive.

How do you handle down days?  Do you beat yourself up?  Can you relax into it with acceptance?  Do you have any special protocols you do that help you feel more positive during down days?


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 sometimes
I have to listen to my body and am not able to follow through as planned.
Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email








Friday, January 31, 2020

A Love Story: Stronger Together




Waking up this morning with pain, I cried. Pure frustration. My poor husband asks, "What do you want for me to do?" At first, I asked for a massage.  When he asked where,  I just whimpered, "Nevermind."  Reality is, he can't possibly help.  The pain seems to have no spot to massage. It's just everywhere.

So, I ask for my Yoga Tune Up Therapy ball, hot pad, and water, and meds.  That helped me to calm down.  Then, he drew me a hot bath with Epsom salts. And, as I soaked, he brought me some tea. 

This is love. 


 Our Love Story

Our first summer together 1983
in Chelsea, MI at Camp MUCC.

I met Kelley when I was 19. He was 22. I was the waterfront director at a fairly unusual summer camp for kids. Camp MUCC, Michigan United Conservation Club, which for those of you who might not know, is a hunting club. Being I had never even thought about hunting before, this was an odd place for me to land a job. But I was there for the water.  Kelley, on-the-other-hand, having studied Wildlife Management at MSU, was hired as a riflery and hunting instructor.


This was to be my home for the summer before going off to college. I had just left my foster family's home never to be a dependent again. I knew I was now on my own. Kelley was on his own, too.  Everything he owned was in two luggage boxes.  This was to be his home before he ventured out to find his "real" job.

The week of training, before campers arrived, we hit it off right away. And from there, on the weekends, once the campers had left after breakfast on Saturday, we often were the only ones left at camp.  Being we were poor as college-students, but we had food and shelter on a small lake in the quaint town of Chelsea, MI. Life was good. 


Kelley was from Manton, MI,
  so he brought me to meet his family before our week's journey.
 His older sister was shocked
when he showed up at her door with a girl!


At the end of the summer, before I headed to college and Kelley off to Arizona to try to get a ranger job at any national park, we went on a week-long canoe trip, just us two, down the beautiful Manistee River.  It was probably the most wonderful week of my life.  At the beginning of the trip, Kelley asked, "What if I asked you to marry me?"  I snorted, "I'm too young for marriage. I'd say no." Nothing more was said about that all week.  However, at the end of the week, as Kelley was taking me back home to Grand Rapids, his car broke down near the Cedar Springs exit.  




We stayed the night at the campground just off from 131, Kelley covered in grease as he worked on the car to get it going. I remember him looking up from the engine as I stood there talking to him and handing him tools as he requested.  And that was when he decided it was the perfect time to ask, "Will you marry me?"  I didn't hesitate, didn't even recall what I had said one week earlier, "Yes, I will."  


We were engaged, no ring or anything at that point.  We didn't tell anyone we were for at least half a year.  Kelley was leaving for AZ in the coming week, and I would be at UofM forging a new life.  Not sure we knew how things would work out, but I know for sure we both knew we were going to be together through it.

This was before the Internet and email was a thing in your average person's life. Kelley and I were poor.  I was living off my savings from the $1000 I had made over the summer, Pell Grants, and student loans.  Kel was living with his mom and step-dad (both very supportive of him finding a National Park job) and odd jobs he found in Phoenix. We could not afford long-distance calls and so we wrote. 


I've kept these in a binder from that time.
There are over 100 letters, notes, and cards.


Kelley was and is a guy who shows his love through what he does and generally doesn't say lovey-dovey stuff.  Surprisingly, when given a pen and paper and no way else for us to connect, and he poured everything out.  I, too, found that writing allowed me to fully express my thoughts and emotions, much more so than when we were goose-bumped, love-struck-dumb in the presence of each other. (Ah, new love!) And so the letters (long, long letters) flowed.  

After six-months apart, Kel not finding a park job and me really struggling at school, he decided to drive back to Michigan.  The red Pacer he was driving was glued and tied together for the most part.  But he was determined to get back to me.  He drove straight through on what would be the equivalent of several Monster caffeinated drinks (but his was black caffeinated capsules).  By the time he got to Ann Arbor, his eyes were buggy and bloodshot and his hair a greasy mess.  He called me at the dorm room letting me know that his car had conked-out on the highway.  

Being I didn't have a car, my good friend, Mindy drove me to get him.  She was ever so kind to let this wild-eyed, unsavory looking man into her car.  She had really only heard my stories, saw me writing him letters, and making him mixed-tapes of love songs, but she really had no idea who he was at this time. 

We laugh now (she and her husband have been good friends all these years later) at how she out of pure love and concern said, "Katie, are you sure you want to marry this guy?"  I was sure.  I loved that scruffy, red-bearded man, and I knew he loved me. 


Now, that's some car!

It was that February (Groundhog's day) that we bought my engagement ring and our wedding rings. That next summer, we did one more stint as camp counselors at Camp MUCC and then the next spring, 5/25/1985, we were married, surrounded by our family and friends. 

We've been married 34 years. Down days like the past few, make me appreciate the love we share.  We've had so many twists, turns, ups, and downs on this journey together.  We've grown so much from those homeless babies back when we first met.  The life that we've built together gives me strength, courage, and purpose.  



Being parents to two amazing children,
and then being blessed to bring in
our daughter-in-law and now our grand-daughter,
makes everything make sense, you know?

Kel this morning at his desk of our shared office.
We continue to journey together. This year finds us with more twists and turns.  Ever stronger together, we will find our way.

I almost didn't write a post this week.
The first two paragraphs were written on Monday.
I was too out-of-it and down to write after that.
Until today.  The direction of the post took
a totally different turn as I thought about
how much my guy means to me
and just how much he supports me and has
from the very beginning.

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.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email





Friday, January 24, 2020

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, researchers Paul H. Thibodeau and Lera 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" by Vanessa 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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