It’s Harder Alone; We Need Community to Thrive

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.

Belonging to a community has been a driving part of my entire life. As a child, I went to nearly every summer church program (partially because my mom couldn’t afford daycare) because I just loved that week of being a part of a special group: knowing the special song’s words and hand motions, sharing stories, munching on little sugar cookies and red punch around a small table with this temporary community.

Working as a camp counselor, not only did I find a temporary community to live with, but I met my best friend and my future husband. In college, I connected to a small group of friends (most I still have today) and sought out others from my classes that shared similar goals. I studied to become a teacher; my schools had been major sources of community for me growing up, and I longed to continue to be a part of it. When my husband and I chose the home we’d live in for our retirement years, I fell in love with a new development that was built on a former site of a summer camp, creating a built-in community of people to connect with.

Emma Seppala Ph.D. explains in PSYCHOLOGY TODAY Connect to Thrive, 2012, “Social connection strengthens our immune system…, helps us recover from disease faster, and may even lengthen our life.” On an emotional level, “People who feel more connected to others have lower rates of anxiety and depression.”

People who feel more connected to others have lower rates of anxiety and depression. “Too many of us pull in and away when we aren’t feeling well,” Seppala goes on to explain that a study conducted in 2006 showed that social connectedness is rapidly declining in the lives of those living in the United States. The report states that in 1985 Americans had on average three people they felt connected to on a deep level and in 2004 that number dropped to only one, with 25% of respondents saying they have no one to confide in.

Nearly, one year ago to the day, I was yanked from my school community, after 32-years, very unceremoniously. That’s the way I felt when I went onto long-term leave and then into retirement last June; my whole life as an educator just ended. It was really difficult knowing I wouldn’t be an integral part of my teaching community anymore. I still am having dreams a few times a month where I go into school, knowing I no longer work there, trying to give my input on the things I know are going on, then realizing that my ideas aren’t needed any longer.

Not only did I abruptly stop being a part of my teaching community, but I also began to really pull away from everyone. Mostly, because I felt so horrible, I just didn’t have anything to give to my family and friends. A new trend began, me canceling plans to go out, to getting together, to calling, to responding, even to posting and responding on Facebook. And within my solitude, I felt invisible and increasingly sad.

The night before Thanksgiving last year, I was invited to a Breathwork workshop at a yoga studio in a town about 20 minutes away from my home. I felt like @#$%, but the task was to get there and then lay down, bolstered by support pillows and wrapped in blankets like a cocoon. I didn’t have it in me to drive, so my husband drove and visited with our daughter who lives in that town.

Upon walking in the yoga studio, the sweet smells from the essential oil mixture and the brewing tea greeted me, calming me. Inside the entry, I was welcomed by several smiling, chattering people scattered throughout the India-infused, boho space. I felt like I was walking into someone’s home.

Breath Work Session with Panacea Breath led by Candence and Ross Zigenthaler.

At the end of the three-hour session, I felt more energetic and positive than I had in a while. I vowed to start coming to this place and be a part of this community. Even though it took me a while to get consistent in attending, I began to feel the support and positive energy from the people through this place. The owner of the studio purposefully sets up a place that would keep people there after class to share in the community through talk and tea.

Slowly, my husband and I are making new connections in communities that we are interested in being a part of now that we are retired. We’ve met other couples interested in getting out-of-doors: hiking, kayaking, snowshoeing, etc. Also, as the development that we live in has more homeowners living here, we are beginning to get to know them through organized activities that generally involve food. Recently, I’ve connected with a few other writers who have shared some nuts and bolts of the process of writing, helping me to feel like writing is something not only do I want to do but am able to do.

Through my blogging, I’ve become connected to others in the Fibromyalgia and chronic mental and physical illness communities. I find that communication through online forums is very important for me. At times, I’m learning something new; other times, I contribute something to a discussion that helps someone else. In the past couple of weeks, I’ve even gotten some much-appreciated kudos from others in the community for my writing, which really helped to get me back at the keyboard.

When we are in pain or not feeling well, often our first reaction is to pull away from all our communities. I know it takes great energy that you just don’t have. However, as I have learned both from my therapy and from my experiences, the more I pull away the darker I get. The more I push in, doing only what I can at that time, the better I begin to feel. The light from others is contagious.

At this time of the holidays, when things can get really overwhelming, I suggest that we connect with those communities that build us up, and we keep this going throughout the year.

How Can I Connect With Community When I’m Not Feeling Well?

  • Online communities in areas of your interest or experiences can be really good. For me, I work to only participate in ones that are uplifting. I want to share the real, but I don’t want to dwell on the negatives all the time. Due to this there were a few groups I joined initially but then dropped. I recommend : The Mighty (mental wellness group), FIBRO CONNECT on Facebook, North Country Trail Community on Facebook.
  • Pen-pal or phone-pal arrangement can reconnect with those you can’t see regularly. For me, writing back and forth (generally online) with a friend is really fulfilling. Recently, I connected back with my friend by setting up a weekly call date. Being she works at home, we generally connect in the morning for about an hour. I can’t say how wonderful that sharing time is. Talking using video (whatever tool you chose to use) brings you loving faces along with your conversation.
  • Ask around about smaller groups in your area that do things you are interested in. I’ve found wonderful groups of people who love to get outside, paint, play the ukelele, eat vegan, etc. (Many share rides, etc. if you aren’t up to or able to drive.)
  • Stick close to your closest family and friends. They totally get it if you’re not feeling well. My family has always done impromptu get-togethers where we either meet at a restaurant or go to someone’s home with each of us bringing something to eat. Very low-key and low-stress.
  • Go to businesses that create community: yoga studios, some gyms (especially if you go to the same classes at the same times), even some restaurants (early breakfast groups), and some shops (art studio, knitting & quilting stores, bookstores, etc.) that allow you to hang out and learn from one another.
  • Volunteer (this can be done on a regular or more flexible schedule which I like) for places that build community: hiking trail care groups, homes for senior citizens, schools, libraries, etc.

My wish for you (and for me) as we are beginning this time of winter hibernation is that we stay connected. Through our communities, we are revived, strengthened, honed, and loved.

What are ways you connect? What are your obstacles? What are the benefits you get by being connected with others?

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. Thank you for your understanding.

Continue Reading:

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Dark teal background with with title text to the right of an info graphic explaining rewiring the brain: drawing of a brain synapsis and a beige brain.

Just Breath and Other Ways to Rewire the Pain-filled Brain

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.

An info graph explaining how the brain can be rewired, featuring an image of a brain.  To the right is the title in white on a dark teal background.
“Neuroplasticity, also known as brain plasticity, or neural plasticity, is the ability of the brain to change continuously throughout an individual’s life, e.g., brain activity associated with a given function can be transferred to a different location, the proportion of gray matter can change and synapses may strengthen or weaken over time.” -Wikipedia

In Over-drive

I believe my form of Fibromyalgia stems from a nervous system that has been chronically in overdrive (fight or flight) mode for all of my life. At 54, that living on adrenaline came to a screeching halt when I could no longer function, forcing me to leave my teaching job and to spend the next few months largely in bed.

As a firstborn to a single mom who suffered from undiagnosed Bipolar and Schizophrenia, I know life was tense and unsure right from the get-go. After living with my single mom and her parents for the first 6-months of my life, my mom got married to a well-meaning man who had lost his first wife to cancer. He had a 13-year old daughter at the time of their marriage. My mom’s emotions were intense. During one fight, my mom punched her fist through a plate-glass window, cutting several long cuts, needing stitches. (My mom told me the story when I asked her about the long, smooth scars she had on her right hand.) Cal, her husband, immediately pursued divorce because he couldn’t handle the trauma and tension that my mom’s explosive behavior caused. Unfortunately, no one seemed to look into why she had these anger issues and irrational outbursts. Instead, mom and I moved into a cute, little cottage in the same town as Cal.

Black background with decorative photo corners in beige and light teal.  An black and white photo of my mom, wearing a wool two piece skirt suit and high heels, pushing a stroller with a 9-month old me, with a semi smile, wearing corduroy overalls and a white sweater.
From all the photos I’ve ever seen of us,
everything looks happy and wonderful.

Training the Brain to Be Vigilant

One of the first times I remember fearing for my safety, I was with my sister. (Jean was born four years after me with a man my mom married for about two years; Joe also filed for divorce due to the violent temper my mom displayed.) She was mad about something and began throwing and smashing the dishes in our kitchen. I can still hear her screaming. To this day, a screaming voice causes my heart to beat rapidly. In fact, as I’m writing this, I can feel my heart rate increase, heat rise in my face, and anxiety, that has been with me as long as I can remember, ache in my chest.

These episodes continued on a regular basis in contrast with the weeks she’d spend on the couch with me taking care of her and my sister and me. I actually preferred it when she was down like this. I could generally count that she’d be gentle and quiet. I learned to walk on eggshells, to fake being asleep to avoid confrontation, and to shutter and whimper whenever she got angry so that she wouldn’t hit. My sister didn’t so much, and I viewed her getting my mom’s wrath on more than a few occasions that come back vividly, causing me again, to become anxious as I think on them.

It wasn’t until I ran away my junior year that my mom did something that caused the police to incarcerate her and eventually hospitalize her. This led to her formal diagnosis and her spending the rest of her life in protective care, making me an independent minor and my sister be placed with a family from the church we had been attending at the time.

Black background with decorative photo corners in tan and light teal.  In the middle is a photo of me, smiling and porting a black graduation cap and gown, draped with golden honor cords.
I graduated Suma Cum Laude with French and English majors and K-9 teaching certification.
I’m standing in our married housing two-bedroom apartment.

Over-achieving Brings Success

These years of living in daily trauma led to me striving-led to me working hard at achieving my goals to have a “normal” family. I went to college: double major and Cum Laude. I married at 21, finished college at 24, and started my first job full-time teaching position a week after having my daughter. My husband front-packed my five-day-old daughter in the school administrative parking lot while I was interviewing. They gave me six weeks off for my maternity leave before I started. I didn’t know what it meant to live without the anxious feeling in my gut and chest. I used that adrenaline to push me to go, go, go. And from that relentless pushing to do and be the best at whatever I did. I got many “Atta-girls” that fed both my ego and my need to fill the whole which I didn’t know I had until recently. I did not know of any other way to be in this world. This continued until June 2018 when the first non-stop pain formed in my calves.

Set On The Healing Path

Through the 10-week Fibromyalgia Pain Program at Mary Free Bed, I was introduced to how a nervous system that has been chronically on alert (fight/flight) is then dysregulated to be too sensitive, sending pain signals where there is no injury. “Like an amplifier always turned to its highest volume,” explains Dr. Daniel Clauw. This has led me to research neuroplasticity and rewiring the brain, which has promising new research and techniques. I am looking to rewire my brain so that my automatic nervous system can live in parasympathetic (rest/digest) mode more often than sympathetic (fight/flight).

I’ve been focusing on this for the past 8 months: yoga, Breathwork, meditation, EFT (tapping), resting, getting into nature, cardio exercise, naps, allowing myself to do only what seems doable at the moment… Many family members and friends had assumed that leaving the stressors of the classroom would be the fix. Sadly, no, this cannot calm down a lifetime of living with constant fear in my gut. However, I am finding good resources and a better understanding. I do believe I’m making headway although not as fast as I would like. It’s tough to squelch that go-go part of me.

Black back ground with decorative photo corners in beige and light teal.  A color photo of a pillar of carved rock that has an arc cut into it and a tall pine tree growing on top with Lake Superior
We loved our walk to Chapel Rock. This is a photo taken on that day.

On our drive home after our week spent in the woods at Pictured Rocks, scrolling through my Facebook feed, up came a post from Rewiring the Brain to Get out of Pain-The Moskowitz Approach. As I read, it illuminated the reason beyond just the cardio sending good endorphins throughout my body as to why my mind and body felt so much better with walking in the woods and as to why it lasted beyond just a few hours. During my walks, I used the skills for meditation I had learned: paying specific attention to what I saw, heard, smelled, and felt. I breathed purposefully-two counts in and four counts out (feeding the parasympathetic system more than the sympathetic), and working on maintaining a tall posture (not the slumped one that has been my natural stance for as long as I can remember), holding in my stomach muscles to support my back and strengthen my core.

I then downloaded the book by Dr. Norman Doidge suggested in the article: The Brain’s” Ways of Healing in which Doidge compares learning to reprogram the brain to “learning a musical instrument or more aptly, perhaps, learning a new language”. The practice is more difficult at first, but it gets easier over time as the new pathway is developed.

A few things that I’m doing are helping me to slowly rewire my overactive autonomic nervous system: yoga, Breathwork, meditation, journaling, EMDR therapy, and mindful walking in the woods.

Dr. Norman Doidge talks about how we can rewire our brains. This is well worth the listen.

Rewiring My Brain

  • Yoga is a meditation in movement. When I did yoga back before trying to purposefully quiet my noisy brain, I used it for cardio and strength training. I did not see it as meditation. I did, however, learn to breathe through my nose and at times would focus on my breath by silently counting in, 2, 3, 4, 5; out, 2, 3, 4, 5. Now, I purposefully focus on my breath for the whole practice. When my mind wanders (which is often), as soon as I realize it, I work to bring my focus back on the in and out of my breath, linking it to the full movement and feeling it as it flows in and out from my belly to my chest.
  • The Breathwork practices that I’ve been doing are two different types. There are several types: Clarity Breath Work and SOMA Breathwork. While each is a bit different from one another, both use focused, measured breathing over an extended period of time 20-60 minutes. I’m enjoying both and find myself energized, content, and pain-free for an extended amount of time. It seems to be extending longer and longer the more I do it.
  • Meditative walking in the woods is new to me. I did it purposefully while in the woods by myself near Beaver Lake. This is something that I want to continue and use. I will use my breathing and meditation techniques while walking in nature.

I would also like to develop the visualization that Dr. Michael H. Moskowitz used (which tends to be harder for me) and try the sound therapy (iLs that Doidge discusses at length in chapters 7 & 8 of his book). I have participated in one sound bath session and hope to be in another coming up soon at the yoga studio I attend.

My efforts are producing good results. I’m off of Cymbalta for Fibromyalgia symptoms (however, using Low Dose Naltrexone) and using very few over-the-counter pain medications. I’m finding I’m lasting from morning to night. I’m more positive and more energetic. I’m beginning to make plans, knowing I’ll be able to make them. And as Doidge explained, it’s getting easier to practice calming my noisy brain the more I do it.

Have you heard of rewiring the brain? Are you actively using this for healing? I’d love to hear what you’re doing and any results you’re finding.

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. Thank you for your understanding.

Continue Reading:

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

teal line drawn waterlily with teal lettering of the title and motto

No Stone Left Unturned

When I hit my lowest and went to my doctor, he wanted to prescribe me Cymbalta. I refused it. I had already researched the FDA-approved medication for Fibromyalgia (FM) and was terrified after reading the many horrible reviews. (Cymbaltareviews) I talked to my family. I cried and refused. I was actually scared.

I’ve since realized why. My mom was hospitalized for the first time in Kalamazoo Psychiatric Hospital in my sophomore year of of highschool in 1980. Her second time, that ended up being a permanent situation, was only a year later. She was being treated for bipolar and schizophreniawith very serious medication.All I could imagine was being in the zombie-state that I remembered from my visits. Scared me silly. However, on December 7, 2018, I knew that I couldn’t handle without some help I agreed to go on a low dose of 30mg of Cymbalta.

Before resorting to prescribed medication, I did try many suggested remedies: yoga, Reiki sessions, a chiropractic session, professional massage, supplements, hot tub, heating pad, myofascial release, over-the-counter pain relievers, Tapping (EFT), and diet changes. I didn’t try pain-relieving shots (like Lady Gaga has) nor acupuncture (due to insurance not covering it). Some definitely helped, others were positive experiences but didn’t seem to change anything, a few didn’t do anything, and one actually hurt me.

  • Yoga: I had practiced yoga for some time but hadn’t been doing any for the past couple of years due to my hour drive to work which led to a 10 workday. On the weekend of Thanksgiving break, I went to a local yoga studio on the recommendation of a friend. It was for a two-hour breathwork workshop. That one visit made a huge impression on me. I knew I found a healing place, a welcoming place. This practice with these people and this teacher has been the single most helpful thing in combatting my Fibromyalgia (FMA). I’m going 2-5 times a week. My insurance does not cover this.
  • Reiki: After the breathwork class, I decided to sign-up for three Reiki sessions with the owner of that yoga studio who is also a Reiki master. Much of her approach in her studio’s ambiance, class structure, and her overall life philosophy ties into this system. After some sharing of my situation, I laid down supported by pillows and covered by a blanket and weighted eye pillow letting my eyes fully relax. After the session, I felt good. Not pain-free, but not painful. I felt positive and light. I haven’t gone since mostly because of its cost. I do believe this led me to a deeper look into my emotional state which has definitely helped heal and grow. My insurance doesn’t cover this.
  • Chiropractic Session (no link due to not recommending): I only tried one, so that probably tells you something. The website listed FM as one of the conditions they could treat. After the neck crack (I realize there’s more than one type of chiropractic treatment), I ended up hurting way worse than when I had arrived. Won’t be going again. My insurance did cover this, but I still had a fairly large copay. *Since I first wrote this, I have gone to another chiropractor. She spent an hour going over my history. Then, she to spin Xrays and came up with a plan. A medical-massage was included from that point on after each 15-minute session with her. The two combined really loosened my neck and shoulders which had been plaguing me for months. I paid $30 out of pocket for 15-minute chiropractic correction and hour-long medical-massage. That was such a wonderful deal!
  • Professional Massage: I found a business card for A Bridge to You Massage Therapy hanging up on our yoga studio bulletin board. The professional masseuse came highly recommended by my fellow yogis. The atmosphere, music, and massage bed felt as if I was in a warm cocoon in a field of flowers-which is saying something since it was in the deep part of January. Claire uses some Reiki during the session besides the wonderful, calming massage. She talked about how a gentle massage (unlike the bruising deep massage I had been frenetically doing to my legs and arms) brings the neuro-system from sympathetic to parasympathetic in about 20 minutes. This helped me tremendously for about a week during some of my hardest times. I would go once a week if I could afford it. My insurance doesn’t cover this.
  • Tapping/EFT: In mid-February, as I was researching ways to calm down the pain through meditation, I stumbled on The Tapping World Summit 2019 the first speaker I listened to wasIyanla Vanzant, and after, I did the tapping session. It did work to calm down the pain. I’m not fully sure I believe that tapping on the meridian points is what makes the difference, but I do know it helps. I think it was because of the mindfulness/meditation one does through the tapping.
  • Supplements/Diet Changes: So, I did an elimination diet, not as scientifically as I should have by adding in two foods instead of one a couple of times. After a week of being off of all: egg, dairy, gluten, caffeine, sugar, nuts, corn, tomatoes, citrus, alcohol, processed foods… It was tough, but sure learned unique ways of making pretty good foods. The problem was, I really had no findings with the exception that I already knew I am very lactose intolerant. I’ve kept off of dairy, caffeine (mostly), lower in sugar intake, and lower in any processed foods by a good bit. Adding in supplements was really pushed by many: turmeric, ginger, vitamins D, B12, and E, SAM-E, and magnesium-malate. The only ones I’ve kept are D3 and magnesium-malate (the # of pills and the cost was just too much to maintain and I really didn’t find a difference with or without.) A doctor (who I have come to respect and trust) has said in his written article that the only supplements he’d recommend are magnesium and SAM-E.I stopped taking the SAM-E because it made me too jittery; however, it did help with fatigue and brain-fog.
  • Heat Therapy (Hot Pad and Hot tub): These have worked pretty well for intense short-term relief. My husband and I had always dreamed of a hot tub at our new home. When I got some refunded money from the state, we bought a six-person tub. That was fall 2018. I was diagnosed at the end of November. What kismet!
  • Over-the-counter Pain Reliever: The only pain reliever that seems to help me is Bayer: Body and Back pain reliever (aspirin w/caffeine). I’ve tried ALL the other types. Just didn’t do anything. I have also tried CBD via capsules and gummies. I really didn’t find any difference. I did feel more groggy, so I stopped. I haven’t tried marijuana (it has just been legalized), but I’m not opposed to it if I should need it and it helps.
  • Myofascial Release: This helps. I do this fairly regularly after heating pad to simulate massage. However, it can be easy to make it too intense. If I do it too forcefully, it can cause a flair in me.

I tried most of these things before agreeing to take 30 mg of Cymbalta daily. I went up to 60 mg after four months. I have now weaned down to 30 mg again after 3 months and am going to try to be off of it entirely in one month. I will then see if I can manage my pain and other symptoms with the new techniques I’ve learned through my 10 week FM Bootcamp training I had at Mary Free Bed (more on that later).

There are a lot of suggested treatments for Fibromyalgia. One can go broke trying all of the things people say work. It’s confusing because what works for one person doesn’t necessarily work for another. Finding what our best path is a game of trial and error.

What are your guiding factors for whether or not to try something? Have there been things that definitely work for you? Have you wasted money on anything?

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

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