Sunflower background with dark green text explaining Creativity Support Circle for those living with Fibromyalgia/Chronic Pain

Reclaiming Wholeness thru Creative Play with Elaine Merryfield

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.

As I have mentioned in a previous post Navigating Life With Fibromyalgia with Healing Support: Interview with Elaine Merryfield: Author, Educator, Healing guide, I lean on Elaine’s wisdom in pursuing fully living my life despite fibro pain.

Elaine Merryfield’s personal experience with fibromyalgia began in 1989. She views this experience as her most meaningful life teacher AND her most significant life challenge. She has found ways to integrate this personal journey with her background in nursing and health education. Since 2000, Elaine has helped others reclaim and express their wholeness as a potent contributor to feeling better. She has led education classes and support groups at Tuality Healthcare and The Frida Center for Fibromyalgia in Portland, OR. In 2018, she transitioned her Fibro Support Circles to an online format.

Starting on Saturday, February 4th, 2023, Elaine offers a new monthly Fibromyalgia/Chronic Pain online support group: Reclaiming Wholeness Through Creative Play. In the below interview, Elaine talks about this new workshop with me at the recent Fibromyalgia Community Conference put on by Support Fibromyalgia Network.

Interview presented at Fibromyalgia Community Conference 2022

“By replacing the fear of the unknown with curiosity, we open ourselves to an infinite stream of possibility.”

 Carl Jung

When we engage in creative play, it’s an active form of meditation.  When our hands are involved in expressing our heart and spirit- we activate our brain centers of curiosity and creative imagination. This hands-on, creative time also provides “a break time from thoughts of worry and stress” as we connect with the inner resources that reside in each one of us. 

This initial Creativity-Focused Support Circle to begin February 4th, 2023 will guide its members in each creating a personal visual journal over time. We will create journal pages with words and images that our individual bodies, hearts, and spirits have helped each person choose because they convey a felt sense of nourishment.  In these moments, we remember the wholeness of our lives beyond fibromyalgia, and we glimpse new possibilities.

In addition to being a member of the monthly creativity-focused online gatherings via Zoom—you will receive between-meeting support via a short monthly audio recording. Your evolving personal visual journal will also serve as a meaningful sanctuary you can revisit whenever you wish.E

In this unique Fibro Support Circle, we will use guidelines rather than hard and fast rules. Elaine will serve as a guide, offering suggestions she has learned from her teachers for accessing the wisdom of the heart despite current life challenges. Each one of us is both very valuable and unique in the gifts and talents we bring to express and share during our personal life journeys.

Elaine shares specifics about Creative Play Support Circle

How Can You Participate?

If you have any questions, contact Elaine at https://www.navigatinglifewithfibro.com/contact-page.html .

If you would like to sign up, go to her website at https://www.navigatinglifewithfibro.com/store/p4/RECLAIMING_YOUR_WHOLENESS_%E2%80%8B%0A%E2%80%8BTHROUGH_CREATIVE_PLAY.html

I’m looking forward to participating in this workshop. I have found that endeavors that light my imagination fuel my sense of purpose and self-efficacy-reclaiming my wholeness. I hope you will join us.

Connected Resources:


My granddaughter says, “Sharing is Caring”;)


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:

The ADHD/Fibromyalgia Connection
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Fibromyalgia and the Highly Sensitive Person
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Favorite “Alternative” Treatments for Fibromyalgia
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Title image: light teal background with White/Purple lettering, purple circles made of differing thicknesses of lines under an orange and gold brain with lightening bolts shooting out from it.

The ADHD/Fibromyalgia Connection

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.

Light teal background with gold and purple banner with Title, gold and orange brain graphic with lightening bolts coming from it on top of purple circles created by varying thicknesses of lines.

Early on a fall Saturday morning, I had the pleasure of talking with Dr. Michael Lenz over the phone.  He was hustling his teenage daughter into the car as he greeted me.  We talked on his drive to drop her off at a school to ref a volleyball tournament.  And then, we continued on his drive home.  We spoke for just under 2 hours, and I felt like we could keep going.  

“I love to talk about these things,” Dr. Lenz said, “so when I find someone who is interested too, I can go on and on.”

Dr. Lenz is a wealth of knowledge in all things Fibromyalgia and ADHD, which is why I wanted to interview him.  However, he came to this specialization through having a heart for those who don’t have anyone to champion them. 

Dr. Lenz has a family medicine practice in Delafield, Wisconsin, where he is both a pediatrician and internist, specializing in lipidology and lifestyle medicine. “I enjoy working with patients of all ages,” he explained. 

At first meet, I caught his positive energy and passion for helping those living with Fibromyalgia and ADHD. “I just sort of fell into seeing more and more of the patients that many others didn’t want to treat.  That has led me to want to learn as much as I can about FIbromyalgia and ADHD,  so I can better treat my patients.”

Being I was diagnosed with ADHD as an adult the year before being diagnosed with Fibromyalgia, I was especially interested to hear what he had to say about the connection.  I had found some research about ADHD and Fibromyalgia, but I otherwise hadn’t ever heard of anyone talking about the possible relationship.

Join me as Dr. Lenz and I talk about the ADHD/Fibromyalgia Connection.

I hope that you have found this interview enlightening and helpful. I come to understand a lot more about my own health journey.

Dr. Lenz and I talked about dividing this video into smaller sections, which I will work on and update here for easier listening. Being this is my first experience with a video interview like this, I’m still working on learning the “hows”.

Resources Mentioned in the Interview

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:

Reclaiming Wholeness thru Creative Play with Elaine Merryfield
When we engage in creative play, it’s an active form of meditation.  …
Fibromyalgia and the Highly Sensitive Person
Guest Post by Jade Bald Jade and I connected via Linkedin when …
Favorite “Alternative” Treatments for Fibromyalgia
u get a diagnosis of fibromyalgia, it can be so confusing as …
teal line drawn waterlily with teal lettering of the title and motto
light aqua background with dark blue font

Fibromyalgia and the Highly Sensitive Person

Guest Post by Jade Bald

My guest post author is not a trained medical health professional. Jade is a writer, a student of history, a fibro patient, and a cat mom. She shares her journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult your doctor before trying anything new.

Jade and I connected via Linkedin when she shared that she had recently learned that she was a HIGHLY SENSITIVE PERSON and that understanding helped her to finally understand why she had developed Fibromyalgia. In my search (the one anyone with a chronic illness tends to have), I, too, learned that there is such a thing as the HIGHLY SENSITIVE PERSON temperament which researchers have found is something 15-20% of the population is born with. When I then learned that my adverse childhood had actually impacted me way more than I realized, I came to not only understand why I had developed chronic illnesses such as Interstitial Cystitis and Fibromyalgia, but what I could do to live FULLY despite chronic pain and other chronic symptoms that had brought my life to a halt five years ago.

Please, join me in welcoming Jade Bald to the PFL community as she shares her story and insights.


Why Me?

I was never an experimenter with drugs, cigarettes and alcohol. It wasn’t a religious thing or because there’s substance addiction in the family, it simply didn’t appeal to me.

I mean hangovers? All that good feeling for a bad feeling afterward? I’ll pass, thanks. Not to mention the way booze has a drain on your wallet. Oh, and it alters your personality and sleep cycles, too.

I have already dealt with poor sleep, why on earth would I drink?

Besides, after learning about the horrendous effects these had on the body, I vowed never to touch the stuff. (I did try, however, a little bit of rose for my 30th and despite the wonderful taste, and how it helped a little with the pain I was experiencing, I didn’t feel too well the next morning).

On top of this, I lived a  clean lifestyle. I was, in retrospect, on the verge of orthorexia (an obsession with clean eating) during my teens. I walked to school every day and went to a fitness class three times a week.

In addition to living a very clean lifestyle, there is no family history of chronic illness or issues of illness when I was growing up.

This is why I didn’t understand why I could develop a chronic illness like Fibromyalgia.

_____________________________

A Possible Clue

Three years ago, in early 2019, I learned I was a Highly Sensitive Person (HSP).

Learning this helped me to understand why I developed Fibromyalgia seven years ago. Being an HSP means, in scientific terms, I have sensory processing sensitivity (SPS).

Attributes of the Highly Sensitive Person (HSP):

  • HSPs tend to be overstimulated by drugs, caffeine, sharp scents, loud noises, etc. Of course, every HSP is different in what they can and can’t tolerate. Often, medicine has to be taken in lower doses and even titrated (slowly increased to prescription dosage) over a longer time that non-HSP.
  • HSPs tend to be more prone to burn out and to stress induced illnesses like FMS, CFS, IBS, etc.
  • HSPs are generally more sensitive to pain, both physical and emotional.
  • They take things very personally at times and this can make them rejection sensitive, especially if they did not have a secure attachment growing up.
  • HSPs have intense emotions. Where a non-HSP feel something from 1-5. For an HSP it’s more in the 6-10 region of a 1-10 scale of emotion.
  • HSPs feel more deeply the physical sensations of the body, meaning they have excellent interoception. In the article Introception: How We Understand Our Body’s Inner Sensations, the author Kim Armstrong states, “‘Brains didn’t evolve for rationality,” said Barrett. “They did not evolve for you to think or to perceive the world accurately. They didn’t even really evolve for you to see or hear or feel. Brains evolved to regulate a body so that it could move around the world efficiently.'” The HSP is constantly noticing how they feel.
  • HSPs tend to be creative, imaginative, and enjoy the arts, whether that’s fine art, music, or dramatic arts. They enjoy the company of animals and animals tend to enjoy their company! Many HSPs become vets, zookeepers/zoologists, or animal rights activists.
  • HSPs are conscientious, wanting to do what’s right ALL the time and wanting everything to be fair for everyone. They’re honest people, but because they are so honest, they expect others to be the same. Thus, they are seen as gullible, and some people take advantage of them.
  • HSPs tend to be perfectionists or have very high expectations of themselves to not mess-up. They have the “do it once and do it right” mindset.
  • HSPs are often thought to be introverted; however, there can be both introverts (70%) and extroverts (30%).
  • HSPs are often perfectionists or have very high expectations of themselves.
  • HSPs are both men and women.
  • HSPs prefer writing to speaking.
  • HSPs have a rich, complex inner world.
  • HSPs have interest & curiosity in many subjects. The famous phrase “jack of all trades, master of none” comes to mind. This is why many are teachers.
  • HSPs have a brain that won’t turn off (not necessarily due to anxiety), making sleep harder to obtain.
  • HSPs really need abundant sleep to function well. Whereas a non-HSP can get by with seven hours, an HSP should be getting eight or more hours. An HSP with fibromyalgia should be sleeping even more.
  • HSP is not a mental disorder. Although, given the right environment in childhood, having this trait can make you more vulnerable to mental and physical health issues. (Children with the trait who are raised in chaotic, abusive, traumatizing homes are far more likely to have both physical and mental health issues later on.) Also, the HSP trait is not  linked to autism or ADHD. A lot of folks think it’s a milder form of these conditions, but as much as some traits overlap, like sensitivity to external stimuli or obsessions, it’s not the same thing.
  • HSPs finds small talk boring, and insignificant. They like deep topics and intelligent discussions. They would rather read books, watch documentaries, or listen to podcasts on important topics rather than listen to someone chatter on about shallow things. Non-HSPs may find them snobbish’, ‘aloof’, or even anti-social.
  • HSPs tend to be more reserved or serious; they prefer to observe and ‘warm up’ to novel people and situations.They may be noted by social scientists or psychologists to be inhibited types, who seem ‘shy’ compared to non-HSPs.
  • HSPs are often so overly concerned with others which can mean they are boundary-less. They often become people pleasers/codependents, and this in turn makes them prime targets for narcissists and emotionally toxic people. Not to mention, this biological lens that actually alienates them from themselves, focussing on others way too much, can make them run into compassion fatigue and burn out.

Childhood and the HSP

Learning that I was a Highly Sensitive Person helped me to better understand myself. The list above feels like I’ve been seen. Looking back on my childhood, I now understand why I was always drained by social activities, even as a child, among a whole host of other things found in the list above.

My mother, an Adult Child of an Alcoholic (ACOA), was emotionally immature and possibly narcissistic. She definitely had anxiety and anger issues, but who can blame her, after growing up in such an environment? I could sense her frustration.

I wondered is it me? Are you upset because of me?

I didn’t have the greatest childhood growing up: my dad cheats, mom divorces, and then dad dies a year later.

Then my mom decides to go back to school for criminal law, after working in geology for a decade. She was the exception to the rule- many ACOA’s have low intelligence levels. My mother earned four degrees, two in geology and two in criminal law. We moved many more times after she finished school. My childhood was a blur of houses, streets, rooms, and schools. I was bullied a lot because I was always the new kid and I had a slight stutter.

I was a nerd, but not by the high school social definition. I never felt I fit in with those my own age. I wasn’t into any groups and didn’t join clubs. I was solo most of the time because I wasn’t a Goth, a Prep, a Jock. or Ms. Popular. I now understand that my tendency to go it alone was actually my highly sensitive disposition looking to stay calm and safe. This I got from being in places like the library, bookstores, or the zoo. I also liked going to the beach, where I could listen to the waves roll in, see the sun glisten in the sky, and feel the hot sand underfoot. I liked the cry of gulls and the scent of the seafoam wafting through the air. In these environments, I used my senses to calm myself and inspire joy and awe deep within.

So discovering this all made sense as to why I would develop Fibromyalgia in my early 20s. My energy tank had gone down to zero with all that stress, and I was paying for it way too early.

Teal and white drawn lotus/waterlily

Jade Bald is a history graduate, fibro patient and cat mom.
She has written for 25 blogs and penned over fifty guest posts.
Her website is: jadebaldwriter.weebly.com
Pinterest: northernwriter
Twitter: jade_bald
Linkedin: jade-bald-writer-and-researcher

Speaking with Jade, I identified with much of her story. While I developed Fibromyalgia later in life (age 54), I’ve recently realized that I am an HSP with complex trauma from childhood. The combination certainly led me to live all my life in the fight/flight/freeze/faun (without realizing it). As I have researched what it means to be an HSP (extroverted in my case), the knowledge has given me tools for how to heal.

If you identify with this post, know that being an HSP isn’t a negative. It’s just a way of being like any other. But understanding what it means can help you better understand what you need to heal.



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:

Reclaiming Wholeness thru Creative Play with Elaine Merryfield
When we engage in creative play, it’s an active form of meditation.  …
The ADHD/Fibromyalgia Connection
Dr. Lenz is a wealth of knowledge in all things Fibromyalgia and …
Favorite “Alternative” Treatments for Fibromyalgia
u get a diagnosis of fibromyalgia, it can be so confusing as …
teal line drawn waterlily with teal lettering of the title and motto
grape purple background with light aqua stripe in the middle. A multi-colored line graphic of a lotus sits dead center. Font is light aqua

Favorite “Alternative” Treatments for Fibromyalgia

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.

Grape purple background, light-aqua font, muliti-colored line graphic of a lotus in the middle

Alternate Ways to Live More FULLY

Once you get a diagnosis of fibromyalgia, it can be so confusing as to what direction to go when it comes to managing your health and trying to live your life as FULLY as possible. It’s especially difficult because most doctors really don’t have great suggestions. In the USA, there are only three FDA-approved prescription drugs: Cymbalta and Savella (antidepressants) and Lyrica (anti-seizure medication). If you research the side effects of these drugs, it can be a bit scary to agree to use them.

That was how I felt. However, after 7-months of getting exceedingly worse, I finally caved and agreed to take the lowest dose of Cymbalta my doctor would prescribe. In the end, I decided to stop taking it. The side-effects (feeling really blah and not able to have an orgasm) as well as, the fear of long-term addiction caused me to stop taking it. I did this under a doctor’s supervision, however, I found that I still went through 3-months of withdrawal that left me feeling nauseated, dizzy, headache, and overwhelmed.

Luckily, there are several bloggers out there who have shared with me what works for them. Through that and my own research, I slowly began my arsenal of alternative treatments that help me to live a FULL life despite chronic pain and all that comes along with that.

In this collaborative post, eight bloggers from the Fibro Blogger Directory each share their TOP THREE ALTERNATIVE TREATMENTS with details as to the whats, hows, and whys. Notice that we didn’t all list the same top three. That would be too easy, wouldn’t it? Fibromyalgia, you will learn if you haven’t already, tends to affect each of us differently. Some FM patients actually do well taking Cymbalta, for example.

The work for you is to know yourself: mind, body, soul. Within that knowledge, then, choose what treatments sound like a good fit. Once you decide to try something, give it a fair chance. Don’t expect results in one day (although you may) or even one month. My health coach, Sharon Waldorp, said that I needed to give gluten-free 60 days to see if it actually is working. I would say the same to you; 60-days. Also, as to not confuse the results, don’t add in any other new things during this time, or you won’t really know if it’s actually helping or not.

It is the norm to be in such a desperate state of pain, exhaustion, depression, and brain fog, that you are willing to try ANYTHING to get any amount of relief. I know, been there! But, if you can stave off buying every form of suggested supplement, pain cream, or massage tool, you can save yourself a lot of money and time.

I recommend reading through each blogger’s (all veterans in the area of living with Fibromyalgia) top go-to’s and making a list of the ones you feel most fit your needs and level of comfort. Then, give one a fair try. During your 60 day trial, please feel free to share your experience with us in the comments and to reach out to the blogger or bloggers who shared that treatment for any nuances they may impart so that you have the best possible results.

Purple background with light aqua stripe in the middle.  An image of Naltrexone prescription bottle (labled as such) with 5 white capsules lying out infront of it.

Me, Katie, of Pain FULLY Living

 https://painfullyliving.com/

  1. Low Dose Naltrexone: I take Low Dose Naltrexone (LDN) twice a day. LDN is an off-label prescribed medication that has given my life back to me. I have clarity of thinking, energy, and lower pain levels. It is not an anti-depressant or an opioid.  There are several quality small research studies from Standford University, U of M, and others that have shown LDN helps people with chronic pain; it does so without being addictive or with adverse side-effects.  To learn about my journey, see my blog post I Did It My Way! One Year of Low Does Naltrexone for Fibromyalgia.
  2. Meditation: The main focus of my wellness journey has been to rewire my over-amped-up nervous system. As I learned more how Fibromyalgia works, I realized that I had been living in fight/flight/freeze for all 54 years of my life due to a very turbulent childhood with a single-parent mom who had undiagnosed mental illnesses. A couple of years ago, I took a free online Mindfullness-based Stress Reduction (MBSR) course.  It focused on meditation.  I never thought I could slow my brain down enough to meditate, but I learned that I didn’t need to.  I can’t express how much meditation has helped me.  When I get brain fog or exhausted, I lay down to do a twenty-minute guided meditation, body scan, and, usually, I get up clear-minded and re-energized. To read more about my experience, see my post: Mind Over Matter: 21 Days of Meditation
  3. Mind-Body Syndrome Treatments: Since last spring, after watching the documentary THIS MIGHT HURT by Kent Bassett and Marion Cunningham, I have worked with Dr. Howard Schubiner (featured in the film) on Mind-Body Syndrome Treatments.  I can attest that 6 months into this, I am having much fewer symptoms with Interstitial Cystitis (even turning off my Interstim Implant). I was able, this September, to do something I never thought I’d do again-backpack.  I went with 3 other women for a 5-day backpack on the Pictured Rocks Trail. Since then, I have continued to push the envelope.  I keep noticing improvements.  Yesterday, I ran at the rest stop we were at in Florida after a 10-hour drive in the car.  My legs could do it without feeling like the Tinman without being oiled!  To read more about my experience with MBS Treatment, read Unlearning My Pain: Mind-Body Syndrome.

Melissa of Melissa VS Fibromyalgia

www.melissavsfibromyalgia.com

  1. Yoga: So, yoga can be used therapeutically – not in the way you might be imagining. I’m talking the four tools: Gentle stretching, restorative yoga (a type of passive stretching that is very relaxing), Breathwork, and meditation. All four, used well, help us to switch on the parasympathetic nervous system (the opposite of the stress response) and rest and relax.
  2. Acupuncture done by a physiotherapist: By placing an acupuncture needle in my trigger points and letting them rest, I’ve felt more relief than through any other physical treatment.
  3. Nutritional supplements: namely Recovery Factors and magnesium, but I’ve tried many over the years.

Small, indoor, therapy pool with youn woman on water treadmill (front right corner) and a young woman walking with the help of young male physical therapist (back left corner).

Lee of Fibro Files

https://fibrofiles.blogspot.com/2014/10/alternative-treatments-for-fibromyalgia.html

  1. Magnesium: The nutritional supplement I get a great benefit from is magnesium. I have proven this to myself by using magnesium to stop leg cramps and muscle twitches all over the body. I then stopped taking the magnesium and all these annoying symptoms returned within one week. I started taking magnesium again and the jerks and cramping pains went away. I now take magnesium everyday.
  2. Hydrotherapy or walking and floating in water: This is something that gives my muscles both the relief and the workout they need. For both of these activities, your body is supported by the water so this takes some stress off the muscles. I alternate with about 5 minutes of walking and then floating. I enjoy doing this in warm water, but many people recommend cold. I first started this as hydrotherapy exercises in a warm pool, with an instructor, but because of covid, the pools have been closed for two years so now I do this activity in a nearby river.
  3. Massage: Myofascial massage is my favorite type of massage as it releases tension and pain. You really need to find a practitioner who knows what they are doing. Some people recommend rolfing or Bowen therapy for the same reasons of releasing the painful trigger points.

Image of man and woman, back to the camera, walking in a summer woodland.

Shannon of Route 5976

https://www.route5976.com/

  1. Nature: Getting out for walks in nature as often as I can. Fresh air and focusing on my surroundings during my walk helps me to feel grounded and calm.
  2. Gentle yoga and stretching in the morning: Even on mornings when I’m sore, I find if I do 5-minutes of stretching it can help.
  3. Regular physiotherapy: I usually go every 8 weeks, and it really helps me.

Orange square with the chemical symbol for magnesium  in white center of the image (purple background, light aqua stripe) & light aqua lettering

Tash of Bohemian BNSPYRD

https://bnspyrd.blogspot.com/2022/01/my-favourite-alternative-treatments-for.html

  1. Magnesium Forte: It may not seem to make much difference when I am taking it regularly; however I certainly do notice the difference when I stop taking it (mostly due to not being able to afford it). 
  2. Mindfulness & Stretching: A strong thought process to ease some of the pains brought on from Fibro; a way of retraining the brain if you will and at the same time utilizing gentle stretching of overused muscles.
  3. Grounding: Getting out in nature and feeling the grass through my toes, allowing my body to relax.

Marijuana plant (green leaves) next to it to the right is an open orange pill bottle with ground marijuana clumps falling out onto the wooden table. Purple background, light aqua stripe and light aqua lettering

Cynthia of Disabled Diva

https://thedisableddivablog.com/

  1. Cannabis: It relaxes my muscles, decreases nerve pain, and makes it possible to sleep well 97% of the time.
  2. PEMF Therapy: This at-home treatment reduces much of the pain I experience from inflammation. This includes weather-induced inflammation from high pressure.
  3. Infrared Red Light Therapy: Another at-home device that I use to comfort sore and aching muscles and joints.

Image of a young woman, eyes closed, lying down, her head on a white pillow.  A man's hands open above her forehead, seem to have a ball of light between them.  He's wearing all white.  Purple background with light aqua stripe and light aqua lettering.

Carrie of My Several Worlds

https://www.myseveralworlds.com/2016/09/03/jinshin-jyutsu-for-fibromyalgia-and-cfids-rejuvenate/

  1. Jinshin Jyutsu: Jinshin Jyutsu is a style of acupressure that involves the application of the hands for balancing energy in the body. Japanese acupressure helps to heal the body and mind.
  2. Reiki: Reiki is an energy healing technique that promotes relaxation, reduces stress and anxiety through gentle touch.
  3. Distraction through books: When I just have to give and rest, I find that reading gets my mind off my pain.

Woman with dark hair, sleeping in white blanket and pillow, alarm clock in front right corner.

Bar of Back Pain Blog UK

https://backpainbloguk.com/

  1. Cooking: When cooking, use foods with multiple uses by making a stew that can last two meals, like a roast chicken, followed by a chicken salad or a chicken curry, then you only need to stand working in the kitchen for one morning. 
  2. Traveling: Before going away, sleep and rest enough to be ready for the travel which can drain you if it’s a long haul. 
  3. Sleeping: Rest is a key factor in successfully managing and living with fibromyalgia, so get as much as you can when you can.


I hope that you find something new that will help you. Do you already have some alternative tools you use to help you live your life FULLY despite chronic pain? I’d love to hear what works for you.

My granddaughter says, “Sharing is Caring”;)


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:

Reclaiming Wholeness thru Creative Play with Elaine Merryfield
When we engage in creative play, it’s an active form of meditation.  …
The ADHD/Fibromyalgia Connection
Dr. Lenz is a wealth of knowledge in all things Fibromyalgia and …
Fibromyalgia and the Highly Sensitive Person
Guest Post by Jade Bald Jade and I connected via Linkedin when …
teal line drawn waterlily with teal lettering of the title and motto
White background with blue/teal poppies (drawn by Sarah Malm), falling randomly around a white box bordered with a light teal frame. Inside the middle white box is the title text done in teal font. Sending Love: Interview with Sarah Malm on Art, Business, and Life with Chronic Illness

Sending You Love: Interview With Sarah Malm on Art, Business, and Life with Chronic Illness

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.

White background scattered with blue/teal poppies drawn by Sarah Malm, with a white box outlined in a teal frame with the title: Sending you Love: Interview with Sarah Malm on Art, Business, and Life with Chronic Illness in dark teal font

Through my work as a blogger and as a member of the chronic illness community, I am fortunate to meet unique, talented people who understand what life is like when living with chronic illness. I met Sarah Malm through my friend, Alison Hayes of thrivingwhiledisabled.com. They became connected through a shared interest in creating an online workspace for those living with chronic illnesses. The group they created called Spoonie Coworking Space meets every Monday and Friday for one hour. During that time, the participants share what they are working on for the next 45 minutes and at the end, we touch base on what was accomplished. It was here, that I first connected with Sarah and learned about her business.

As often happens, we connect outside of those types of groups and begin to form a friendship. Sarah and I connected due to her heartfelt cards that for me spoke to difficult events that were going on in the lives of those I love. Her cards and other items helped me to reach out with love in a concrete way at a time when I felt helpless to do anything of consequence.

Then, Sarah began to reach out to learn more about my experience with LDN, EMDR, and other ways of living more FULLY despite chronic pain. For me, that has been the main way that I have discovered treatment options for Fibromyalgia, Interstitial Cystitis, and Complex PTSD. Living in a small, rural town, if I hadn’t made these connections I have no idea where I would be today; certainly, I would be much worse off.

And so, it is with great pleasure that I share Sarah’s story with all of you, PFL readers and community. Together, we can realize our potential and live FULL lives that sustain and nourish us.

Square image with a white background and light blue/teal poppies (drawn by Sarah Malm) scattered around a framed white box with light teal outline. Inside a square teal frame is an image of Sara.  Her face looks serious, she's wearing glasses and a red sweatshirt.  Holding up her left hand, she's written "I'm imperfect & I'm enough!" on her palm, holding it up next to her face.
Photo was taken & text from Sarah Malm Design FB Page post
This photo was taken 8 or 9 years ago when I was reading The Gifts of Imperfection by Brene Brown. About the same time, I had started creating greeting cards. It has been quite a journey! Personal transformation, divorce, new marriage, and my artwork have expanded and transformed, too. I am still imperfect—always imperfect—but that doesn’t stop me from growing and learning.

Hello Sarah. Tell the PFL Community a bit about yourself.

Hi, thanks for having me, Katie. My name is Sarah Malm. I live in St. Paul, Minnesota with my husband, Stephen, and our dog Baxter. We married a little over two years ago after deciding to move to a downtown apartment near a lovely park that often hosts live music. We looked forward to enjoying free concerts and using the park for walks with Baxter.

But then, the pandemic happened, so it has been a bit of a different experience than we had envisioned. Luckily, the space we live in is beautiful, since I spend nearly all my time there. I have set up a wonderful art space, which has been a big part of my life for several years and has even, in the last year, led to my business Sarah Malm Designs. Just recently, I left my part-time job at a church to focus solely on my business and my new endeavor SENDING YOU LOVE podcast which is coming soon.

Related Reading:

Square image with a white background and light blue/teal poppies (drawn by Sarah Malm) scattered around a framed white box with a light teal outline. Inside a square teal frame is an image of Sara, smiling her face lit up.  She's wearing a purple shirt, sitting in her art office.

What chronic pain issues do you live with?

A few years ago, I developed lower back pain that has progressively gotten worse. I was diagnosed with degenerative disc disease and given the label of Fibromyalgia. I have been trying to figure out the true cause of the pain ever since. I also have had hypothyroidism/Hashimoto’s for 20 years.

Tell us about your story? What do you think led to developing these issues?

My pain, strangely, started after an extreme chronic bout of bronchitis in 2017. I don’t know if there is a correlation or not. Currently, I am working with a naturopath after giving up on finding answers from traditional medical doctors. She started me on supplements. Then, for the past month, I have been taking LDN (Low-Dose Naltrexone), 3 mgs twice daily. It seems to take the edge of the pain somewhat, but I still suffer from quite a bit of pain at night. I’m still in the beginning process of finding if LDN will help me and from there what is the best dosage and schedule.

This week, I went began a new treatment at a holistic chiropractor (Secoya Health) that treats from the mind-body perspective. I had my first visit, which involved a thorough intake involving several different evaluation tools. It was quite amazing. I will get my treatment plan next week after they review the results of each of the tests.

What is your day like living with chronic pain? How does it impact you?

I would imagine I have been conditioned to live with the pain in some ways and just power through. But I have to admit, it is absolutely exhausting. I have trouble bending over, putting socks on, and dressing, or putting the harness on my small dog.

Though, trying to get comfortable sleeping at night is the worst. My worst days I am probably a 6-7 on the pain scale. At best, it can be a level 3. Sadly, because the pain affects my energy so much, I feel like I don’t have what I would like to give to my marriage, but we do okay.

The pain has affected my ability to work, either sitting or standing for any length of time is difficult. Two years ago, I worked full-time outside the home. More recently, I was working only 12 hours outside of the home, but as I mentioned, I just left that position.

Even still, I have been able to use my time to engage in my artwork and my own business which feels even more fulfilling. The finances part is difficult, though. My husband and I do have insurance, but it doesn’t cover my current treatment with the naturopath or the therapist, or even the LDN. But, I am willing to pay for it if it works. I’ve spent thousands on medical appointments and consultations that, in the end, did nothing for me. It gets pretty discouraging and hard to have hope for new treatments.

Square image with a white background and light blue/teal poppies (drawn by Sarah Malm) scattered around a framed white box with a light teal outline. Inside a square teal frame is an image of a leaf pattern that Sarah has created (yellow, orange, light brown, and brown maple leaves.)
One of Sarah’s new projects has been to create patterns such as this one with the leaves. Her art is impacted by her life. Sarah explained, ” I found a solitary giant maple leaf on the windshield of my car after I left my first somatic experiencing therapy session in October. I took it as a sign of hope and healing. I saved it, pressed it and put it on my scanner to scan so that I could try using it in a pattern like this. And it worked beautifully!”

How is your treatment going?

Since this most recent treatment of Low Dose Naltrexone is fairly new, only time will tell how it will work.

The other thing that I started recently is Somatic Experiencing Therapy to address past trauma. (See her post: Grieving While Chronically Ill and Childless Not By Choice). As I have learned more about the mind-body connection, especially as it relates to pain, I started to research this type of therapy and found someone in my area who practices it.

I’ve had three sessions so far and they have been immensely powerful. I am addressing issues that I didn’t realize were affecting me, at least not to the great extent they are. My therapist says that it is a reasonable expectation that my pain could be resolved. So, I feel hopeful about it.

Would you feel like explaining more about Somatic Therapy? I’m very interested in learning more. It’s very in line with the Mind-Body Syndrome (MBS) therapy that I’ve been practicing.

Sure. Somatic Experiencing Therapy is new to me, and I have only had four sessions. But, we begin each session with me sitting back comfortably in the chair, closing my eyes, and the therapist leads me through a meditative survey of my body, beginning at the top of my head down to my toes, focusing on what I am feeling in my body. Literally, how does what I am feeling in my body translate to emotions I may also be feeling. Once we identify what that might be then we talk about what may be the source of that feeling and why. The emphasis is always to just feel it and not judge it in any way. 

Related Reading:

Square image with a white background and light blue/teal poppies (drawn by Sarah Malm) scattered around a framed white box with a light teal outline. Inside a square teal frame is an image of Sara, smiling calmly, with Baxter, her white and black pup. Both are cuddled in an orange, green, yellow, tan Afgan Sarah has crocheted.
Baxter and Sarah cuddled in an afghan Sarah crocheted.

What do you do to manage your pain? Do you have any advice for others who live with chronic pain?

I use the heating pad when necessary. I also have a TENS unit that sometimes gives temporary relief. I take Tylenol regularly, which seems to help occasionally. Stretching and massage with a handball on some of the knots in my back helps sometimes. I would like to be able to meditate, but I find it difficult. Deep breathing and listening to calming music or singing bowls can help me relax.

So, for me, meditation is when you are fully focused in on the present and not doing a ton of thinking about the past or future. Do you feel that when you are doing your art work, that you are focused in on just creating? Do you find this to be helpful for managing your pain, depression, etc?

Absolutely, being creative takes me to a different space mentally and emotionally. I equate it to a kind of meditation therapy. It certainly doesn’t take away my pain, but it temporarily takes me away from my pain. When I don’t focus on my pain, then I am less likely to be depressed, too.

How did you start your business?

I started creating cards 10 years ago when a friend introduced me to stamping and paper crafting. A few years later, after I divorced my husband, I started selling them on Etsy as a way to earn a little extra money. About four years ago, I decided to pursue it more fervently.

Then, in the past year, I began drawing and painting, creating my own original artwork and printing it onto art paper to create greeting cards and art prints. During the pandemic, I developed the mission with my card line: “Send the Love”. Out of that, I have decided to start a podcast which I’m calling “Sending You Love” as a way to connect with others, to offer wisdom and tools to help people learn to love themselves, and thereby love others.

How does your chronic illness affect your business?

I think my illness informs my business, but it doesn’t necessarily limit my business.

My chronic pain is, in many ways, the impetus for working for myself. I want and need the flexibility of creating my own work hours to be able to work around any flares of pain I might have. Also, the creativity of my business is a refuge for me, if not a distraction, from my pain.

Sitting down to draw or paint takes me to a different place in my head. If I am up and moving around trying to do chores around the house, I am focused on how my pain limits me from doing what I need and want to do. If I am drawing or painting, I am in my imagination and not focused on my body. 

When you’re hurting or haven’t slept and you had planned to work, what do you do? Do you push through? Do you have strategies? Can you give yourself a break? How much pressure do you have with your business?

There have been times when I have pushed through the pain in order to accomplish goals I might have for my business. For example, the main pressure might be if I wake up and have a lot of pain, but I have orders that have come in that need to go out, I would work on those. I print most of my orders on demand, so I would need to print, package and ship them.

Other than that, most of the time, my work is flexible, whether it is working on my website, social media, or the actual drawing or painting. I probably should be more scheduled and rigid in how I attend to those things. I often wish I was more organized in planning and scheduling, but right now I am not. I work as my energy allows. 

Give us more about the type of cards and artwork you do. To me, the special thing about your cards (besides the beautiful art) is that you address some heartfelt, real, and often tough moments in our lives. Tell us more about your thinking process as you come up with your art and products.

When I started creating my original art about a year ago, I really tapped into the wisdom and quotes that spoke to me and created art around that. Since I spent a lot of my life feeling alone (which makes sense now because I had essentially abandoned my true self), I feel like I want my art to reach people who may also be feeling alone or helpless.

I want to inspire, bring hope and love to others. Honestly, most people are only ever thinking of themselves. As an empath, I feel unique in that I am always “feeling the room” and aware of the energy others are giving off. I feel this innate responsibility to serve people who may be like me, “feeling all the feels”, and need some support, and that includes those who experience chronic illness.

My podcast, “Sending You Love”, is born out of my artistic journey and wanting to connect with people like myself on a deeper level.

As we grow and change, learning more about what makes us who we are and engaging in becoming our best selves, we will find that some people around us will fall or drift away. Why? Because they don’t understand the changes that we are going through. It’s the same when we have chronic illnesses. People don’t understand what we are going through, and it is easier to avoid us than really try to understand what we are going through.

Throughout my growth and change, as well as my chronic illness, I have been determined to not give up. I am determined to become my best self and to love myself first. If that means that people who don’t understand fall away, then fine. It’s hard when it happens, but I have also found other people on my journey who DO understand and have supported me.

Sometimes these supporters have been complete strangers, but we connect on a deep level because of a shared understanding whether it is about personal growth and/or chronic illness.

I want “Sending You Love” to be a place for people to find a voice and a community where they feel understood, heard, and loved, even if we are strangers. I feel driven by the universe to connect with people so that they know they are not alone. This is partly informed by my own personal theology that God/Source/Creator doesn’t intend for us to live alone or in pain. We are each created as unique individuals for a purpose, and we are LOVED, unconditionally. The goal is to see me, and for all of us to see ourselves through this same lens. I hope my podcast will help others connect with that in their own way. 

Last, what advice or words for those reading this, would you like to give them?

My advice would be to find a balance that works for you. You can’t follow something that someone else does because you are unique and what works for someone else may not work for you.

One of the things I have learned recently through my somatic therapy is to honor the little girl that I sort of left behind because I felt, at the time, it was more important to take care of others and not disappoint others. I am learning to frequently check in with her now. Am I doing something because “I” want to do it, or because I think someone else wants me to do it, or because I am afraid of disappointing someone else.

I have spent much of my life living it for other people, and, in part, I think that is the emotional source of my pain. Please, don’t do as I did. Please, be true to yourself. Love yourself most. Honor what is true for you. 

Connect With Sarah

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.

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