Background, sandy beach at Pictured Rocks Nat. Park at sunrise, aqua sheer layover with title: Waliking Through Walls: Chronic Pain Won't Stop Me Anymore

Walking Through the Walls: Chronic Pain Won’t Stop Me Anymore

As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.

Last week, I did something I thought I’d never do again.  I backpacked for the first time in five years! 

Fibromyalgia Walls Closing In

As I followed the best advice from experts in the management of Fibromyalgia, I found that I increasingly felt closed in, cut off from what I felt I could do. Those of us living with Fibromyalgia know the fear of the flare. We’ve been told that limiting our activity is the best way to keep that at bay. The fine balance of doing and resting tends to be the focus.

For me, one who has been very active all my life, the more I followed this commonsense advice, the more I felt like the walls of Fibromyalgia were closing in on me. I had given up the thought of ever doing many things I loved to do. Actually, I was coming to accept that was the way things were.

After this experience, chronic pain won’t stop me anymore from doing the things I love.

Related Readings:

A 40-year old Katie, brown hair, wearing a t-shirt and shorts portaging a canoe over her head. Background is wooded (Algonquin Provincial Park).
Me, portaging a canoe at Killarney Provincial Park, summer of 2011.

Life Before

Prior to developing Fibromyalgia, I lived a very active life.  After a full day of teaching, I’d come home to a full night of family life.  On the weekends, my husband and I often do all our house chores of yard work, laundry, and the like, as a family.  Then, we’d fit in a hike,  family gathering, or attend our kid’s soccer games.  

In the summer, we would go on extended vacations that tended to be both rustic and physical: hiking down the north side of the Grand Canyon, a week-long canoe trip in Killarney Provincial Park, or exploring Isle Royale.

That all came to a halt in November 2018 when I found myself struggling to even work.  My last day of teaching was December 7th, 2018 when I went on long-term leave, fully believing that if I took a month or so to take care of myself, I’d be able to go back.  That didn’t happen, and since that time, I’ve spent most of my time focusing on getting well.

Related Readings:

MY LDN Journey

A huge part of my healing work has been done through research.  Living in a small, rural Michigan town, there’s no one who knew much about Fibromyalgia.  I, myself, had never heard of it before my diagnosis.

Discovering Low Dose Naltrexone 2 years ago, led me to a point that I could actually consider going on a 40-mile, 5-day hike along the North Country Trail in Pictured Rocks National Forest.

This past April was my one-year anniversary since starting Low Dose Naltrexone.  I’ve detailed my journey through my blog. However, it was soon after that I talked with Linda Elsgood and discovered that I should look into taking my best dose (4.5 mg) twice a day rather than what I had been doing, dividing the full dose into two separate doses of 1.75 mg.

After further research, I found that for Fibromyalgia and C-PTSD, doctors have been finding good success with two or even three doses a day.  (LDN Book 2 & Dr. Brian Johnson)

Related Readings:

Two older women standing on either side of a large builboard map of Pictured Rocks trail, each smiling while packing 30+pound backpacks and wearing backpacking t-shirts, pants, and boots.
Map of Pictured Rocks trails.

A Chink in the Wall

Only this winter, I turned down the offer to do this exact hike with two of my best friends.  I just didn’t feel I was able.  However, since starting the double dose of 4.5mg (on waking and around 4 pm), I was able to have more active days and finally be more predictable.  

I began to hike again with a group of women (my age and older) called the Wander Women of Newaygo.  Every other week, we would do a day hike of 4 to 9 miles. As the weather warmed up this spring, my husband and I began to do day hikes, but also some rustic camping over several days, including day hikes and kayaking.

Last month, I was feeling pretty strong during a hike (those of you who get into the woods know it can cause a thing called “hikers high”. It was then that a newly acquainted hiking friend from the WW group asked if I would like to join three others on a weeklong trip.  Impulsively, I said, “I’d love to!”

Related Readings:

Three older women sitting on a fallen tree trunk which was laying over the trail.  Their full backpacks are facing the camera.
Taking a much-needed load off in the middle of the North Country Trail.

Doubt Takes Hold

When I went home, though, and told my husband, the reality of the trek hit me.  (He had done the hike the summer before with my cousin and found it very challenging.) He was worried that my body would lock up and I wouldn’t be able to make it.  Being there is no cell service and he was to be out of town for work that week, the concern was real.

The past few months prior to the hike, I was involved in a lot of long hikes, yard work, and moving my daughter from a four-bedroom house to a 3rd-floor apartment. This level of physical activity had proven tough on my body.  My body literally locked up, giving me electrical zaps and zings in my lower back that would cause me to have to freeze.  However, with the LDN and other management protocols I use, I was able to keep going day after day.  

What amazed me was how clear my brain was and how much energy I had each day.  This had been the cause of my early retirement.  I could mostly push through the deep muscle pain I have everywhere, but the inability to think/talk and the feeling that my body was filled with wet sand, made it impossible for me to function.  

Now, I will admit, before my LDN dose kicks in (generally an hour after I take it in the morning), I struggle to move.  I tend to be really zombie-like and the pain/tight muscles really need massaging.  But after that, I have been pretty good until the afternoon. I can feel myself “dropping” which leads me to take my second dose.

Related Readings:

Three older women, standing smiling into the camera with the beautiful blue of Lake Superior and the arch rock formation at our backs.
Lake Superior and Pictured Rocks Arch in the background.

Call to Be Courageous

The group of three women, all older than me and very supportive, understood my concern.  Nancy, the one who had invited me, offered to do weighted hikes (meaning I carried a backpack that I gradually increased in weight over several hikes).

 Also, she helped me develop two contingency plans.  One: being it’s a straight path, I could just rest and do my myofascial release with the therapy balls I would bring with me. If that meant they went on ahead, that would be fine because I could catch up with them once they stopped at the designated campsite.  Two: the trail has a few drive-up spots for day campers/hikers.  I could most likely find someone to take me out to the town, so if I carry my ID and Visa, I could go to a hotel. (I had packed my pain management paraphernalia in my overnight bag for after the hike, which I could get access to in this case).

In the end, I just felt called to do this hike.  I can’t explain it, but I think the walls of Fibromyalgia had been making me feel more and more limited; I just had to break through to prove that I can live the FULL life that I have been striving for.

So, I purchased a lighter-weight tent, backpack, sleeping bag, and a few other special things.  All our gear was 25+ years old, so it was reasonable, but it also locked me into doing the hike.

Related Readings:

Four older women, smiling while wearing their full rain gear and backpacks after a night of thunder storms.
After a night of thunderstorms,
we are drenched but ready for the day’s hike.

Hiker Ups and Downs

I’m not going to say this trip was all sunrises, Caribbean blue waters, and campfires, but a good portion was.  For the upper peninsula of  Michigan, the weather was pretty perfect for the hike (70o days and 50o nights).  Also, there were NO bugs (a miracle, really).

We had a pretty intense thunderstorm the first night.  My tent stayed dry, well almost.  

I also have Interstitial Cystitis, and as I have been working on “Unlearning this Pain” with Dr. Howard Schubiner, I had been having more intense bladder spasms the few weeks prior to the hike. 

This was a main concern of mine, so I had packed with me a women’s urinal, Circa Care pee cloth, a few level-5 Poise Incontinence pads, and some quick-drying, moisture-wicking underwear.  Dr. Schubiner told me to keep no secrets and use humor with my situation, which I did my best to follow.

That first night, after getting up 3 times to pee in the woods, the storm began to rage, about 3 am.  In the end, I realize that I should have just gone out into the storm at 5 am when my bladder started to demand it because either way, I’d get wet, but I just couldn’t think straight.  

In the end, I was able to wash things out at our next stop, using biodegradable soap. Using my pads, I had only gotten my underwear and thermal leggings wet. After this situation, I didn’t have any more issues at night, other than getting up like 4 times.  However, hiking with a 32-pound backpack doesn’t make it all that easy for an attack of urgency.  Luckily, my companions fully understood, and we all shared embarrassing stories that got us laughing pretty hard about the whole absurd situation.

Related Readings:

Three older women on a sandy beach, blue skies above and pine trees in the background, doing sun salutation with hands together above their heads.
Morning yoga at Mosquito Beach before getting our water filtered.

Retraining My Painfilled Brain

The first three nights of backpacking an average of 8 miles a day, found my body seizing up and zapping me as I worked to put up my tent and make my dehydrated dinner.  I had packed two main luxuries: a camp chair and four 6 oz plastic bottles of wine to have one per night.  

Even though the zings and zaps came, I would stop briefly and then continue on.  Each night in my tent I did my “rolling around on my balls” as I told my fellow hikers (myofascial release) and in the morning did stretching and yoga. At night, I did guided meditation (based on the MBSR of John Kabat Zinn). While I hiked, I walked mindfully and did a lot of gratitude and positive affirmations, “I am strong. I am safe. I am healthy.”

What may be a breakthrough is that by the 4th night, the electrical shocks in my back had stopped.  Even after the 5th day of hiking, I didn’t have that issue.  I believe this is because I’m showing my over-amped nervous system that I am actually okay and not hurting myself.

Three older women looking out at brilliantly blue Lake Superior from a sandy ledge, eating lunch.
After sitting down, it was definitely hard for me to get up.
We still had 6 miles to go.

Change to Three Doses a Day

After the first night of extra pain in my elbow and knee joints, keeping me awake and feeling pretty worn out about 7 pm each day, I decided to take a third dose of 4.5mg. I had been taking my second dose earlier in the day (2 pm) than when I was at home, and so, I took another at 9 pm.  

With all the physical exertion, I didn’t have my normal struggle to fall asleep that I usually do with taking LDN at night.  Also, the level 6 joint pain was much less through the night.  I believe this extra dose really helped me to do the whole 40-miles.

Four older women, bare feet, standing in Lake Superior.  Sandy beach in the foreground and gray cloudy skies above.

Hiker High

I can tell you that six days after coming home from our trip, I still am feeling the “high”.  I didn’t have the awful “flare” that those living with Fibromyalgia dread so much.  I’ve had less activity and have done a more myofascial release during these last days because my legs are definitely more clenched up. 

However, my mind is feeling fairly clear and my body feels up for having my granddaughter spend the night. 

I am so very grateful to have broken through this wall that I had thought was permanent. I know now that I am able to do the things that I love with people that bring me joy. LDN has been an integral part of getting me this far down the trail.

6 year old girl dressed in all black pointing a wand at the camera, a older man, red/gray beard dressed as a Hogwarts student, scowling, and me, white hair, wearing Griffindor colors/tie and pointing a wand at the camera as I try to look scary.
The day after I got home, my husband and I spent with our granddaughter at the Zoo for Wizarding Day.

I have spent four years on this wellness journey. I do not want to give the impression from this post that I could have ever jumped to this endeavor without all that has come before. I needed to follow the conventional wisdom of pacing, etc. to be able to calm down my nervous system to even be able to function enough to work toward this goal. There are MANY things that led up to this moment and many things that I continue to do. To learn more, read about my journey from my posts. I’ve documented from the very first few months.

Thank you for visiting my blog today. I am committing to posting once a week by Friday.  However, as you know, my new normal means that sometimes I have to listen to my body, and I cannot follow through as planned. I appreciate your understanding.

Continue Reading:

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Unlearning My Chronic Pain: Mind-Body Syndrome

Unlearning My Chronic Pain: Mind-Body Syndrome

As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.

Title graphic with colorful, paint splattered background (blues, yellows, reds, and oranges).

Two months ago, I met for the first time with Dr. Howard Schubiner, a Michigan physician and veteran pain research scientist. He has been treating patients with chronic pain for over twenty years. We met via online video (a practice he began in reaction to the COVID pandemic). In our initial consult, Dr. Schubiner spent two hours with me, reviewing my pain history and as much of my personal history as we could fit in.

Those of you who have followed my wellness journey since developing Fibromyalgia and having to leave my teaching career earlier than I had wanted know that I have focused my efforts on rewiring my pain-filled brain. I fully believe in brain plasticity, which to me means that I can lessen the pain pathways that have developed and create new ones that lessen the impact of chronic pain on my daily life. This is what gives me hope and purpose.

Dr. Howard Schubiner has been treating chronic pain patients for nearly two decades, during which time he has been developing and refining his mind-body approach. He is recognized as a leading researcher and physician in the field of pain medicine. He has authored more than 100 publications, including an NIH-funded study on fibromyalgia for the journal PAIN. He is on the board of the PPDA, which advances the diagnosis and treatment of stress-induced medical conditions. He is now working with neuroscientists at the University of Colorado at Boulder on a neuroimaging study for people with back pain.

Past Post That Show My Journey:

This Might Hurt

Immediately after watching THIS MIGHT HURT, I emailed Dr. Schubiner to see if I could get into the program.

Facebook is stalking me! The ads I have on my “wall” tend to be a lot about chronic pain. The trailer for THIS MIGHT HURT showed up this past winter- over and over until I finally clicked to watch it. The trailer intrigued me, and so I bought the movie for personal use. However, then, I stored the link away for quite a while until I felt I was in both the right headspace and had alone time to watch the movie.

Wouldn’t you know, but I LOST my “secure link” for viewing the film. Luckily, I found my receipt email. Fortunately, the director, Kent Bassett, emailed me right back and gave me a new link. I watched that weekend for the first time.

I identified with Dr. Howard Schubiner’s patients featured in this film and was intrigued by the talk of Mind-Body Syndrome. Early on in my effort to understand why I developed Fibromyalgia, I realized that due to childhood trauma, I had lived in Fight/Flight since birth, training my nervous system to be over-amped. Dr. Schubiner’s method of treating chronic pain spoke to what I had already been doing on my own over the last three years.

The idea of having a medical doctor guiding my treatment, having a focused program led by an in-tuned, pain-educated, medical specialist made me giddy. I googled Dr. Schubiner right away, hoping to find out more.

The Patients Featured in THIS MIGHT HURT

Tony has suffered from debilitating leg pain since he was 12. In the last five years, he’s had to stop playing basketball and attending school. The dozens of doctors he’s visited can only tell him that he has Chronic Regional Pain Syndrome, which typically has no cure and no known cause. Once he turns eighteen, he is likely to be prescribed opioids. This is when he meets Dr. Schubiner.

Maureen is a writer, working on a book about the Great Lakes, an area she loves. But she suffers from severe pain in her hands that makes it hard to type and has also prevented her from getting a full night of sleep for years. After physical therapy doesn’t work, she is told that her final option is neck surgery followed by a long recovery period, during which she’d be dependent on opioids for pain management.

Kym used to ride motorcycles and worked at an auto parts supplier. But then her abdominal pain and fibromyalgia became so severe that she’s spent the last 8 years in bed rest, disabled. While she currently depends on opioids to manage her pain, and on her mother to help with the household, she hopes to return to a full life where she can play with her nieces and nephews and be of service to others.

Bio text from THIS MIGHT HURT website.

Help Near Home!

I was floored when I found out that Dr. Schubiner practiced in Michigan (where I live). I was also excited to find out that he was accepting new patients, so I sent out an email right away.

His personal response came just three days later; I was ecstatic to find out that he did in fact take my insurance. And the best part was he could see me via Video. At this point, I didn’t have my COVID vaccination, and the drive there would have been about three hours, so this was wonderful.

We set our first appointment for the end of June. Dr. Schubiner sent me 12 pages of paperwork (asking for extensive health and personal history) to send in prior to the appointment and asked that I forward any pertinent medical records to his office. Also, he asked that I purchase his workbook, Unlearn Your Pain, and read through chapter 3 before our appointment.

An image of the cover of Dr. Howard Schubiner's workbook, Unlearn Your Pain.
Dr. Schubiner’s workbook that I use as a part of my MBS treatment.

What is Mind/Body Syndrome (MBS)?

In chapter 2 of Unlearn Your Pain, Dr. Schubiner explains, “People with MBS do not have pathological changes in their body tissue: they have physiological changes that are reversible. That is, they have changes in blood flow, muscle tension, nerve-firing patterns, and brain-wiring patterns that create pain in the absence of tissue pathology. ”

One of the main questions Dr. Schubiner asked me is to tell him about my pain. My pain is all over, mostly deep within my muscles, but this summer, developing in my elbow and knee joints. However, as I explained, the more intense pain comes and goes and even roves to different spots on my body for no apparent reason. “This,” he explained, “is MBS. All your tests (which are extensive) don’t show any acute injury, yet you have pain. Not only that, but it moves around. That shows it isn’t due to any tissue damage.”

Dr. Howard Schubiner explains what Mind/Body Syndrome is and how and why the brain causes pain.

As he sees the wheels turning in my brain, Dr. Schubiner is quick to say, “Your pain is very real. All pain originates in the brain. The good news is that your pain isn’t damaging your body or life-threatening, and it can be reversed through retraining your Central Nervous System (CNS).”

Smiling older man wearing glasses at the tip of his nose, wearing a white doctor's coat (Dr. John Sarno).
Dr. John Sarno, author of The Mind-Body Prescription

TMS to MBS: A Little History

Dr. Schubiner began his work with MBS after training with Doctor John Sarno in New York, physician and author of The Mind-Body Prescription. Doctor Sarno first coined the term, Tension Myositis Syndrome (TMS) when describing the phenomenon he began to notice in his practice of over 50 years. He came to develop the TMS theory (more and more research now backs this up) that a person’s unconscious mind uses the autonomic nervous system (ANS) to decrease blood flow to muscles, nerves, and tendons, resulting in oxygen deprivation which causes pain.

In the article John Sarno, M.D., An American Hero: Marking a shift in how we treat chronic pain published in Psychology Today just after Sarno’s death in 2017, the author states, “The latest neuroscience research validates this. In patients with chronic pain, the body’s stress chemicals remain elevated, causing every organ system to respond in its unique way to the adrenaline and cortisol assault.”

An explanation of the work of Dr. John Sarno, Mind-Body Prescription.

Dr. Schubiner came back from his time working with Dr. Sarno to establish the Mind-Body Medicine Program at Providence Hospital in Southfield, Michigan. At the time of my first appointment with him, Dr. Schubiner had changed to a one-on-one approach, rather than the group approach that was shown in the documentary. Also, he now uses the workbook as a guide to the process.

Even though I was excited to start the program with Dr. Schubiner and had read the first 4 chapters of Unlearn Your Pain, the subtitle of the book, A 28-day Process to Reprogram Your Brain, didn’t sit very well with me. As I mentioned, I had done a lot of the work he suggests, including 9-months of EMDR Therapy. Over the past 3 1/2 years, I had studied extensively on rewiring the brain, and while I believe it can be done, I have not found it to be a quick or an easy thing to do.

A young woman (long, light brown hair hair) and man (short dark brown hair) sitting at a table.  Wearing blue denim button down shirts, they  calmly smile.
Directors of THIS MIGHT HURT: Marion Cunningham and Kent Bassett

Not An Over-night Process (At Least, Not For Me)

Dr. Schubiner was very upfront that for some, complete elimination of pain just after being educated on how pain works and what Mind Body Syndrome is. That is the case for the director of THIS MIGHT HURT, Kent Basset.

I had the opportunity to interview Kent and when I asked him the reason for his making of the documentary, he explained, “Much of the drive to make This Might Hurt came from my own struggle with arm pain and chronic tendonitis as a 22-year-old. Unable to type or even turn a doorknob, I was forced to drop out of college. Although I saw several doctors and tried physical therapy, strength training, even opioids—my pain grew steadily worse. It wasn’t until I had an insight into the role of the brain in triggering real physical pain that I was able to completely recover.” He and Marion Cunningham, co-directors, hope to make the MBS treatment for chronic pain more known and understood, and so that viewers can see firsthand the powerful transformations that can happen when people go through this intensive mind-body healing process. 

Kent is very passionate about his mission to get the word out. “Since I was able to overcome my own pain, I felt an urgency to help people who are needlessly suffering. I strongly believe people should be told this option exists since for many it is transformative. Many people go to zero pain, which is really rare for chronic pain. Now there are solid randomized controlled trials showing the treatment is effective, and so we think this treatment should be on the menu that doctors discuss with their patients.”

I did it! A 5-day/4-night backpacking trip: 40-miles with a 32-pound backpack and good friends:)

My post detailing the hike: Walking Through Walls: Chronic Pain Won’t Stop Me Anymore

3-Months Later: Final Appointment

Flash forward three months. This week was my last video appointment with Dr. Schubiner. Much like it began, it was a time of self-reflection, some words of encouragement, mindfulness exercise, advice, and kudos.

The last time we had met, I shared with him that I had been asked to go on a 5-day backpack of 40-miles on the North Country Trail at Pictured Rocks with three other women (my age and older). He knew that I had been able to regularly do day-hikes of 6-8 miles, and he knew that this was something that I both longed for and had fear of. When I had told him that I wanted to go, his exact response was, “I’m excited for you. I think you are making a good decision to go! Keep reminding yourself that you are fine and will be fine, whether you have pain or not.”

And so, I went. I purchased lightweight gear; my previous gear was 30-year-old technology. Also, I made two contingency plans in case I couldn’t keep up or make it the entire distance. Because the trail is along Lake Superior, it is in a straight line with campgrounds and sight-seeing spots that allow the drive-up spots periodically. With this in mind, I planned for 1. rest and doing my myofascial release along the way (allowing my group to go on ahead of me if need be) and 2. get a ride into town to a hotel if I had to bail from kind-hearted, car-visiting tourist (which there were plenty of).

While I won’t go into all the details (saving that for my next post which once written I’ll linked here), I MADE IT! I carried a 32-pound bag, hiked an average of 8-miles a day, survived sleeping on the ground, set up and tore down my camp each day, made my own meals, and socialized for the entire week. I wasn’t a “burden” to the group, although I was generally the slowest of us four. I even led a couple of morning yoga sessions. As I’m sure you can imagine, I felt EMPOWERED. A month later, and I feel not only empowered but I know that I am able to live my life FULLY despite pain.

At our last Zoom appointment, I explained the pain that I had. The first three nights had leg lock up, lower back electrical shock pain. It was BAD! However, I did what he said. I continued slowly on: setting up my tent, making dinner, and doing myofascial release with the two therapy balls I had packed with me. By the 4th night, the electric shock that I had been getting since the spring every time I “over-did-it” didn’t happen. Neither did it happen on the 5th night. In fact, it hasn’t happened again (although it felt like it might the other day after doing a full day of yard work and 16,000 steps).

Sunrise on a sandy beach on Lake Superior; the sky has white clouds, over blue skies, with yellow, peach, pink, rising at the horizon.

Promise of Life Beyond Pain

I reported to Dr. Schubiner that I still have pain, but I know that it’s not hurting me. I know that I can make plans and live my life FULLY. “Even if I’m never pain-free, I can live like this,” I told him. He and I agreed that I know the steps to take and can continue on without our appointments. However, he let me know that I can contact him at any time for help whenever I need it.

His parting instruction was that I was ready (and needed) to start looking outside of myself, get out of working 24/7 on healing-follow my passions and focus on others again.

While I will miss talking to Dr. Schubiner, I know that I have my life back. It’s not Pollyanna, positive thinking; it’s knowing in my gut that I can create new neuropathways that override the deeply embedded pain and trauma pathways. It’s going to take time. (I was right; 28-days wasn’t meant for me.) 53-years of living in fight/flight takes a bit to undo. But, I have the hope founded in facts, the will, the support, and the know-how to get there.

I realize that this diagnosis may not resonate with you. I am sharing my journey and my own experience/understanding. I would suggest that you look into it if you have Fibromyalgia, chronic pain, etc. It can’t hurt to at least learn about it to see if it may help you. This was a difficult post for me to write. I had intended to write it soon into my connection with Dr. Schubiner. However, I also know that this can get some upset and the fear of a backlash to my experience kept me from my computer most of the summer. And so, I ask you to receive this post with that in mind. I welcome, though, an honest, caring discussion.

Recommended MBS/TMS Resources

Thank you for visiting my blog today. I am committing to posting once a week by Friday.  However, as you know, my new normal means that sometimes I have to listen to my body, and I cannot follow through as planned. I appreciate your understanding.

Continue Reading:

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Continue Reading:

Bright blue sky behind a natural arches in Arches National Park with Title Text in White: Traveling Across the USA in the Time of COVID-19: Living FULLY Despite Pain

Traveling Across the USA in the Time of COVID-19

What was supposed to be our 35th-anniversary trip this past May, turned into a fall adventure this October. As a newly retired teacher, this is my first trip during “school-season”. With Covid-19, though, I really wasn’t thinking we should travel beyond our safe confines of home. And while most of our reservations made for May were able to be canceled, we had one VRBO rental that wouldn’t refund our money but allowed for us to rebook. “October, yes, that will be a safe time,” we agreed last spring never thinking that this virus would be actually raging in every state but three across our country.

After doing a few backpacking trips away from home but still in our state, we decided that we could use enough precautions to remain relatively safe. We packed our car with everything we’d need to be mostly independent. We brought some freeze-dried backpacking meals and our Jetboil backpacking stove for meals on the road and vowed to eat at establishments that respected mask-wearing, leaning towards those that had outside dining available.

As we drive across the country from Michigan to Utah, I’ve decided to write about how I’m handling the trip healthwise as well as notice how the people in each place we visit are handling the pandemic. I will be using this month’s October prompts from A Chronic Voice: Producing, Acquiring, Switching, Disappointing, and Forming. Being I have spotty Internet access, I’ll be writing a bit here and there and hope to capture the complexity of this moment.

Time to Transition From a Time of PRODUCING

“Autumn shows us how beautiful it is to let things go.”


A dirt  two-track covered by golden aspen leaves going through the middle off into the distance.  On either side, white aspen tree trunks, their branches still holding onto golden round leave, lit up by the sunny blue sky.  Green pine fill in the lower portion under the aspens.
My soul soared as we walked through this pine and aspen tree forest.
The beauty of letting go becomes obvious in this setting.
There’s a sense of peace that comes from the high energy of summer to the mellowness of autumn.

The summer months are a time of producing with September being the time of harvest. The fall is a time of slowing down, reflection and letting go. I have spent this summer focusing on producing a quality blog and becoming a patient advocate for those living with chronic illness. To do this, I switched from a free website platform (Blogger) to a paid platform ( which has bumped up the level of what I can do on my website. Devoting time to learning new technology, becoming involved in groups that focus on supporting those with chronic illness, and developing new connections within those groups has been greatly enriching for me. The time and effort I’ve given to this gives me a purpose and helps me to grow an area of passion.

With last month being Pain Awareness Month, I poured extra time and effort into producing, reaping new connections and skills. Instead of one post a week, I wrote six total: two of which were interview posts (my first attempts) and one was a collaboration with another chronic illness blogger. A Facebook Group that I help to moderate, Chronic Illness Social Pod has started a new Instagram group @cispfriends. It’s in its infant stage, but I’m excited to be a part of it. I had to make a 1-minute video to help explain the purpose of the group. It took me about 3-hours to create and two-minutes in length, ha! ha! Besides all of that, I spent many hours learning new skills for blogging as well as connecting with others from the chronic illness community and sharing out on my social media. This can consume a lot of time, energy, and focus.

My intro video for CISPfriends Instagram Group.
We welcome any blogger who lives with chronic illness to join us.

So, it’s been quite a transition into stillness as we’ve traveled from Michigan, through Iowa and Nebraska, to Estes Park, Colorado, and on into the National Parks of SE Utah. Literally, I would say most of each day has been a forced detox from all things digital. Not only is there no Internet connection, often no phone connection, but we also haven’t been able to listen to the radio. I do have a downloaded audiobook that I have listened to as well as off-line Pandora and Calm guided meditations. But, mostly, we have quiet. This has led to simple yet meaningful conversations between my husband, Kelley, and me as well as just hunks of silence as we soak in the scenery.

By the time we’ve gotten to our place to stay each night, I have been too tired to do much of anything online. At first, I was feeling a bit guilty for not keeping up with my “blogging work”, but I’m seeing this time of being unplugged as a good time for reflection as to my goals and savoring the connection to Kel and our time in nature which we both find restorative.

Driving into Dixie National Forest listening to Simon and Garfield sing
The Sound of Silence via our off-line Pandora station.

ACQUIRING Respect for Mother Nature’s Power

I saw old Autumn in the misty morn stand shadowless like silence, listening to silence.

Thomas Hood

Golden aspen trees and dark green ponderosa pines in the foreground with the smoke-clouded Rocky Mountains in the back ground.
The Rockies were a bit smoggy due to the extensive fires happening in the west. While the courageous frontline firefighters are doing their best to put them out,
it’s only at the mercy of Mother Nature that they can really get any control over them.

Since early March, those of us in the USA have come to acquire a new respect for Mother Nature. In this day of technological advancement, we get the wrong-headed notion that we are in control. 2020 has shown the world that, no, we cannot control the march of nature. COVID-19 will run its course, whether we try to intervene or not. Yes, we hope to be able to contain it through health protocols of wearing a mask, social distancing, and washing our hands more often, but it will do as it will do, much like the fires that are burning much of the west. Viruses, fires, murder hornets, hurricanes…have all shown us that we are not the ones in control.

My husband, Kelley, and I had one scary event that brought home just how powerless we are. We were on our drive from Estes Park, Colorado through Rocky Mountain National Park to our next destination, Moab, Utah. At the very top of the mountains 12,000 ft elevation via Trail Ridge Road, we lost all connection, even the ability to make an emergency phone call. What we flatlanders of Michigan (and other states like Nebraska) don’t always consider is the lack of oxygen at that level. Kelley and I were somewhat adjusted to it due to the hiking in the park at Bear Lake Trailhead to Emerald Lake at 10, 000ish ft elevation which was a gain of 600 ft. However, getting out of our car at the various scenic pull-offs into the bitter winds on top of the harsh tundra at the top of Sundance Mountain was still a challenge.

Debating to stop for a bathroom break, Kelley started to slow down when we saw an older woman waving her arms at cars as they passed. I have to say, things are a bit surreal in my memory, seeming to move slowly and out of reality. We parked as she quickly walked over to us, out of breath and visibly upset. “Thank you for stopping. I didn’t think anyone would. My husband has passed out,” she pointed to the heavyset man slumped in the driver’s seat of their van. “He has COPD. I don’t know if he’s breathing. He is making some gasping noises now and then.” Kel and I rushed over, seeing that the older gentleman was indeed unconscious, but thankfully breathing, as his chest was rising and falling. The shaken woman explained that they were from Nebraska and hadn’t been in the Rockies for many years, “We haven’t been in the mountains since he developed COPD, among other issues. We just thought this would be a safe get-away because we were afraid of him getting the virus.” She asked if we could call for help because she had no service. I knew we didn’t either, but I had thought the 911 would work; turns out it doesn’t in remote places like this. Just then a white Rocky National Park truck with FIREFIGHTER on the side went by. I waved and jumped, but he continued on, not seeing us.

We then looked to power-up the man’s C-Pap, but she didn’t have a converter that would plug into the power sources of her car. That was when we realized that the only thing to be done was to get them down the mountain to where the air was more saturated with oxygen. She said she’d be able to drive, although, “I’ve never driven in the mountains before,” she explained, obviously nervous and worried. We decided to move him from the driver’s seat to the passenger seat just behind. Moving the seat back and sliding open the side passenger door, we prepared the area by moving their beagle and his bed over enough so the elderly man had a place to sit. However, Kel and I knew trying to pick him up was going to be nearly impossible for us. Luckily, he “woke-up” although he was pretty incoherent. We were able to explain what had happened, and he agreed to move to the back with our help. Kelley took his arm and with a bit of lifting and guidance, he was able to get him slid into the seat. We got a pillow that they had packed to prop under his head. He thanked us and assured us that he was okay for them to drive back down to Estes. Kelley told her just to take it slowly, and it would be doable to drive down the steep and winding road. We watched them drive off as we headed down the other side of the mountain, leaving us to worry about how they fared.


Another fall, another turned page: there was something of jubilee in that annual autumnal beginning, as if last year’s mistakes had been wiped clean by summer.

Wallace Stegner

Man wearing a blue hospital mask with a wide brimmed hat, next to a woman with white, long hair wearing dark sunglasses and blue hospital mask, in front of seated people wearing masks.
My husband and I have mostly felt safe while traveling. Here, we’re taking the Zion shuttle bus. They removed seats to allow for social distancing. Masks were required.
Also, the beautiful weather allowed for windows to be open.

We planned to be careful as we drove the 1,776 miles between Michigan and Utah: stay to ourselves as much as possible, eat out in places that had outside seating and safety protocols, and sleep in higher-end hotels that were taking the protocols seriously and had the means to thoroughly clean rooms.

However, dead tired after driving 8 hours our first day and 2 more to go to get to our first hotel, we stopped in a small town off the highway in Iowa to fill up on gas and get dinner. After having face-mask order in our state of Michigan (as well as the other precautions), I was really shocked when we stopped at the gas station to see so many not wearing facemasks. Then, when we drove into town hoping for a meal, we came upon the only non-fast food restaurant that was open. The reviews on Google sounded good, so we went in. No one was wearing masks; however, they were social distancing the tables. I’m sorry to say that we gave in and had our meal, sitting as far away as we could from others and close to the door, but I didn’t feel comfortable at all and have been worried ever since. 14 days later, thank goodness, we don’t have any symptoms of COVID-19.

After that experience, we committed to not being caught off guard again. Luckily, every hotel we’ve stayed at along the way has had good safety protocols. The National Parks, all have had mask requirements, ensuring as much social distancing as possible by requiring reservations for shuttles and only allowing a certain amount of people in enclosed spaces at any given time. They are also providing hand sanitizer in almost every public place of gathering. I’ve been thankful to the other visitors who are being respectful to give distance on trails and in open spaces and who wear masks whenever we can’t be 6ft apart.

On our first night in Utah, we stayed in Moab. We were able to go on a Sunset Cruise on the Colorado River to view the canyon walls and night sky (a designated dark sky zone). Before the cruise, we had a delicious “cowboy” dinner in which safety protocols were followed. Before the boat ride, we had time to use the restroom that was outside of the dining area. My husband, known for his sneezing fits whenever he looks into the sun, took a step out onto the patio leading to the restrooms. The sun was still bright and like clockwork, he began to sneeze. He had on his facemask. When the gentleman more than 6 feet away noticed me looking uncomfortable about Kelley sneezing, he said “Bless you!” Then, he went on to say, “Before COVID, we said ‘Bless you.’ Now, we say ‘Oh Shit!'” and he jumped out of the way to emphasize. We all started to laugh. I kept laughing at that for some time and am snickering as I write, imagining his body contortion as he dodged Kelley.

One small town where we stayed two nights at a wonderful bed and breakfast (being careful to take care of it’s travelers by timing out breakfast, social distancing, and providing hand sanitizer), we ran into problems with no COVID-19 prevention protocols being followed. This town population of 240 and its county of fewer than 3,000 souls are deemed “green”, thus not needing to follow facemask, social distancing, etc. within their businesses. However, this is a town of TOURISM being it’s so close to Capitol Reef National Park (and others). So, it is crazy for them to think they’re safe when people from literally all over the world are coming there (some because it IS a GREEN COVID-19 area). Kelley and I were prepared this time. We went one night without a meal, too tired to pull out the Jetboil. My stomach was upset anyhow, so Kel ate his GORP and called it good until the wonderful breakfast of eggs and potatoes the next morning at the bed and breakfast. The next night, we called one of the restaurants to see if we could get take out, feeling that would be okay, the owner actually told us they did not provide that service but tried to convince us to come in for a meal. We instead, found a burger and ice cream place that had outside seating and the staff was wearing masks. When Kelley told the worker who took our order behind a plexiglass guard that we appreciated them taking the care to do the protocols when no one else in town seemed to be, she said, “Well, we get a lot of visitors from all over here. We’re protecting ourselves and our guests.” Yes! That’s exactly what I thought should be the sentiment.

I decided to look into the situation more. I found out that the town had had only two infections up to that point- a child and an adult. However, they also only have a traveling doctor who visits two days a week. The bigger towns with tiny-sized clinics are about 50 miles away. At the time we were there, the news showed that Utah’s COVID-19 wards were near to full and cases were climbing in the state. Being much of the state if VERY rural (no services in many areas), there just isn’t a lot of fully-equipped hospitals with skilled personal. Should the little town of 240 be hit by the virus, oh boy…I can’t imagine! One resident who was elderly and had health issues wrote to the local papers that she wouldn’t be able to participate at all in her community because they weren’t going to put in the simple protocols of mask-wearing and social distancing. How lonely and scary that must be for her and others whose home is in that town and county.

And in the last couple of weeks, we have learned that the mandates set by our Michigan governor had been narrowly voted down by the Michigan Supreme Court. So as we prepare to head home, we are essentially going back to that town in Iowa that won’t be following any safety protocols. This is beyond disappointing. This is dangerous. I’m thankful to hear that the school districts I’m in contact with are keeping with the protocols they established at the beginning of the year and that the health departments are stepping in to give guidance. I just wish that our national government would put safety protocols in place so that traveling through our country wouldn’t be such a gamble.

SWITCHING From Fear to Awe and Pain to Peace

If a year was tucked inside of a clock, then autumn would be the magic hour.

Victoria Erickson

Smiling man with redish beard and little hair on his head is taking a selfie with smiling woman wearing a blue baseball cap.  Behind them is a red sandstone Natural Bridge of Bryce National Park.
The beauty of Bryce National Park takes a back seat to the realization
of the force and time that it took to create it.

I have to say that being in Utah this fall has been pretty magical. I mean this on several levels. The scenery (which really isn’t a just word for what we’ve seen) is inspiring to say the least. My mood has gone from fear to one of peace and joy. Seeing these immensely awe-inspiring rock formations that have happened over billions of years has helped me to put myself and this time into perspective.

Physically, I am feeling better than I have in quite a while. Just before our trip, I had been in a Fibro Flare for three or so weeks. That included higher levels of pain, brain fog, fatigue, and depression. But in the past 16 days, I’ve been feeling next to normal. Yes, I have pain (I always have it nearly everywhere on my body), but I’ve been able to manage it. In the car, as we drive from place to place, I’m using my two Yogu balls under my thighs, my back from shoulders to lower back, under my bum and hips, helping to release the tightness of my muscles. I also have my Renpho massager which is battery powered, fully charged for in the car. I use this on the tops of my thighs, stomach, feet, calves, chest, and neck. I brought my newly purchased YUYU hot water bottle for in the car which I can fill up with hot water using our Jetboil stove.

Each day, we’ve hiked between 6-9 miles many times with elevation changes- some as little as 100 ft and others as much as 800 ft. I had one down day that had me really feeling unwell and had taken me by surprise. After that, though, we’ve made better plans to pace, taking rests during the hikes more consistently (using my FitBit to watch for changes in my heart rate) and taking full days for rest, like I am today. When we get back to our home spot (with electricity, water, and Internet), I’m using my heating pad, massager, and shower. During our hikes, I stop and do yoga-type stretches, using my walking sticks to help with that. As well as I am taking moments throughout the day to do short breathwork meditation.

I’m not fully certain why I’m doing so well. Is it the dry air of the dessert that everyone says can ease joint pain? Is it the medication change I made? I’m now taking my Low Dose Naltrexone two times a day (instead of one time at night). I now take 2.5 mg at bedtime and 1.5 mg on waking. Or is it, as my husband thinks, the fact that I’m being more physically active? Could it be spending most of my waking time in nature and not connected via the Internet and phone? I don’t know what it is, but I sure am thankful for this time of being able to live more FULLY.


Life starts all over again when it gets crisp in the fall.

F. Scott Fitzgerald

Smiling woman's face; she's wearing dark sunglasses and has her white hair pulled back off from her forehead.  In the background is a river, trees, and mountains.
Hiking back from the Narrows of Zion National Park.

Sitting on a boulder next to the Virgin River in Zion National Park, I sat in wonder at the development of the rock formations that surrounded me (and those I’d seen on the rest of our journey through this area). Ever so slowly, patiently the elements have carved out these spectacular, seemingly impossible places of beauty and tranquility. One luxury I carried in my waist pack was my journal and pen. Feeling, finally, the spark to write, this came tumbling onto the page.

A poem in white font within a brown square set on top a photo fo the red rock formations of Bryce Canyon.
Not all the rock formations were created through flowing water.
Some were created through the freezing and thawing of moisture as well as wind.

My hope continues because of this. No matter what we face, if we persist, no matter how weak our efforts seem, we can, in the end, form a new and brighter dwelling place within ourselves, our communities, our world. We can’t give up. We must not give in. We must fight for what we know is right, for our own selves (as in taking care of our bodies), for our disenfranchised communities, our fractured countries, and most importantly our hurting Earth.

What are your thoughts on traveling during the Pandemic? I am really glad we took this time to see areas of the USA that we hadn’t. I’ve found new inspiration and hope through what we’ve experienced.

The format for this post is thanks to A Chronic Voice linkup. This month, the topics were Producing, Acquiring, Switching, Disappointing, and Forming. Each writer takes the given topics and gives them their own spin. Check out these wonderful writers at October 2020 Linkup (scroll past the prompts to find the linked up posts).

teal line drawn waterlily with teal lettering of the title and motto
Wooded path with Title in white font: 4 Top Tips for Taking Your Grandkids On Outdoor Adventures

Four Top Tips for Taking Your Grandkids On Outdoor Adventures

Forest scene with the text: Engaged Grandparenting Despite Pain: 4 Top Tips for Taking Your Grandkids on Outdoor Adventures; teal colored water lilly icon on white circle over the text

The outdoors is one of the greatest places to teach kids about the wider world and is good not just for the body, but the mind as well. Making a concerted effort to get kids out from behind their screens and into the fresh air can seem like an unwinnable challenge. Especially if you yourself struggle to get around most days due to chronic conditions as I do. 

On the whole, though, the benefits will always outweigh the risks, especially for a child’s long term development. As a grandparent, you may have the time and ability to show your grandchildren the wonder of the great outdoors.  I have found it to be one of our favorite things to do with our granddaughter who lives in an apartment with her parents in a small city.  While they do family outings when they can, my husband and I can use our times with her to especially encourage her to be curious about nature.  We are seeing her grow in love, comfort, and interest in all things to do with getting into the wild. In addition, we are building memories and bonds through our adventures that will never be erased.

However,  taking a young child (we started at age two or so with her), isn’t as easy as just heading out into the woods.  I’ve included four tips to make your times go smoothly so that you have an enjoyable time together as you venture outside.

Plan ahead

Especially if you are someone living with a long-term chronic condition you must make sure to plan ahead before you go charging off into the woods. Make sure someone who can come and get you knows where you are going and how they can reach and be reached by you. Plan your route carefully so that you aren’t going to difficult to access areas that may exacerbate any problems you have that day. Plan for the weather also as you don’t want a cold and wet day to ruin any fun you may have had planned. Pack the right kit to keep the fun going.

Make it an interactive experience

Kids can get bored easily if all they are doing is walking. Plan for some interactive moments during the trip, such as bird or bug watching. Getting the kids to partake in the trip rather than just being on it is the best way for them to enjoy it and to start getting them wanting to go back. Turn the trip into a game. See who can spot the most unique birds or bugs or who can spot the most rabbits. Get them thinking about the area they’re in and they’ll come to love it.

My granddaughter loves to play make-believe. We are often superhero fairies or pirates. We just follow her lead and the storyline always is fascinating. Many times she and I hide behind a tree while grandpa searches for us. We’re ever so sneaky! We learn so much about what she thinks about and finds important during these walks in the woods.

Start small and build-up

If you are someone living with a chronic illness and aren’t used to the outdoors, you know not to go charging into the nearest forest. You don’t have to be out for hours to appreciate the wilderness. Start with taking the kids somewhere local first, such as a nearby field or walk around the block. You need to find your limits before you can start to really enjoy the fresh air. Keep your walks to 20-30 minutes then, after a while, try 45. Then an hour. Slow and steady wins the race.

We love planning for breaks. Her “Bapa” is a cookie monster. So is she. So he packs their favorite cookie so that they can have a cookie break about halfway through. If you’re on a longer adventure, having a book downloaded to your phone to read aloud is also a favorite. One fun trip involved collecting beautiful leaves of different types. Leaf Snap is one phone app that you can use to identify plants.

Pack what you need

Just like planning ahead you need to pack the essentials on your little day trips. Food, drink bad weather gear, all this needs to be taken into account before you leave the house. Are you going to be outside long enough to need medication? Are you going to need food or drink for your blood sugar levels? Do you have the means to contact someone should the need arise? What about sunglasses when out and about during summer? If you struggle carrying a large amount of weight for long periods of time then this is going to limit your outdoor trips quickly. Especially if you are out for several hours at a time.

Ideas for what to pack

  • Small First Aid Kit with a whistle for emergency
  • Water bottles and extra water or water filter & small drink mixes
  • Sunblock
  • Hard or chewy candies-great for a short break
  • Light lunch: Peanut butter & jelly tortilla rollups hold up well and are yummy
  • Baggies for found treasures

The times we have spent outside with our granddaughter, noticing bugs, picking wildflowers, watching an eagle fly overhead, or conversing with the loons on the lake have been my favorite times with her.  Sure, we play games on her tablet (have you heard of My Talking Tom games; they’re funny!) and do inside activities like coloring or baking, but our times spent outside have really been magical.  And that’s the way to a kid’s heart, sharing in wonder and magic.

Misty mountain background with the text: This is a sponsored post via with affiliate links to products that I use or have researched and find valuable.

What are some of your favorite outdoor experiences that you have had with your children or grandchildren? Share your stories so that we can add to our idea-collections!

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.

My granddaughter says “Sharing is caring.” 🙂

White background with teal waterlily icon and the phrase Pain FULLY Living: Living FULLY Despte Pain.

The Benefits of Nordic Walking for Those Living with  Fibro and Chronic Pain

The Benefits of Nordic Walking for Those Living with Fibro and Chronic Pain

teal line drawing of lotus flower

If you’re looking for a safe, fun way to get active while getting outside, then Nordic walking is ideal. Nordic walking is a full-body workout that appeals to all ages and fitness levels. It actually originated as a way to train for skiing during the summer. It’s essentially hiking with poles which help to enhance your experience.

Good demo for how to correctly use trekking poles (used for hiking) and nordic walking poles (used for exercise).

Nordic walking can be done anywhere in the countryside, the local park, from the mountains to the beach, and even in urban areas. Why not discover some hidden gems near you? It’s a great way to meet people and there are many groups online that organize walks. And the bonus side of this, it is supportive walking (to help with balance issues), arms are a part of the process (so it’s all over strengthening and off-loads pressure on the hips), and you can go at your own pace and distance (slowly gaining strength and cardio) Here are some more benefits of Nordic walking:

Ideal for neck, shoulder and back problems

Nordic walking has many physical benefits. It’s good exercise and uses 90% of the skeletal muscles. If you have problems in that area it could be very beneficial. Always speak to a back doctor for an expert opinion before you take on any new hobbies or sports. The poles also help to reduce pressure on your knees and joints, while at the same time burning almost 50% more calories than regular walking.

Physical Therapists talk about how and why walking benefits for back pain.

Improves mental wellbeing

Getting in touch with nature is important for many aspects of emotional and physical healing. The fresh air, the scenery, and the enjoyable exercise all contribute to improving your mental wellbeing. Research has shown that humans react positively to being in nature; our brains even function differently. By using the poles, you can also walk in all the seasons. Nordic walking is a great way to get out of the city and away from the stress of your everyday life.

Accessible to all ages and fitness levels

Nordic walking is accessible to all ages and fitness levels. Athletes do it for training, but it’s also appealing to seniors and anyone with lower levels of fitness. Those living with Fibromyalgia know that exercise is important and walking is a gentle form of cardio is wonderful. However, using the Nordic poles can add that extra physical support which can’t hurt. It’s a very versatile sport and it mainly depends on where you do it. If you’re new to the concept, here is a beginner’s guide to Nordic walking with more tips and advice. 

Why it’s especially good for those living with chronic pain

Minimal equipment needed

All you need for Nordic walking is a good backpack or water pack, a sun hat, some good hiking shoes, and a set of poles. One of the great things about this activity is that you don’t need to break the bank buying all the equipment. Here are some of the best walking poles of 2020 to give you an idea.

The poles play an important role. They not only support your joints but they also enhance the workout. The poles help to propel you along which means you move faster without realizing it with less force placed on your hips. 

Social benefits

There are many social benefits of Nordic walking. You can arrange a hike with friends or family or even your dog. In this time of COVID-19, walking is one of the safest ways to be with others while social distancing. It’s also a great way to meet people are there are plenty of hiking groups online. You just have to search in your neighborhood. Nordic walking is a wonderful way to discover the amazing landscape near you, or alternatively you could even organize a walking vacation.

And….you can use the poles for supported stretching and strength training!

  • Arm and shoulder stretches
  • Hip stretches
  • Leg stretches
  • Supported balancing

With so many health and social benefits, it’s not surprising Nordic walking is among the fastest-growing fitness trends around the globe. If you want to explore more of the outdoors and get the movement you need in a safe, gentle to your body, why not try it out?