This is going to be a short post. I just got back from a few days camping with wonderful friends on the shore of Lake Michigan. This has been planned for a year. Our group, we fondly call the Wander Woman, started the hiking/camping trips July 2018 when we did a week-long trip to South and North Manitou Islands in Lake Michigan. My friend, Lisa, reminded me that she noticed my constant massaging during that trip. It wouldn’t be until November of that year that I fully understood that there was something very wrong with me.
I’ve been planning and working towards my goal of spending the week with them. We were to camp in Canada at Lake Superior Provincial Park. However, the border between Canada and the United States is still closed due to COVID-19. So, instead, we chose a closer state park in that we could drive to. Not everyone who had originally planned to join us could come: some due to family commitments, one due to the death of her mom (non-virus related), some due to not feeling comfortable in doing so.
We agreed to be logically safe and trusted that our Wander Woman cohort had been safe prior to camping. The park was not crowded at all and so we had no issues out on the trails, at the camp, using the restrooms, or on the beach. We chose to wear masks only inside public places (the restrooms).
I am so energized after these past few days. Wonderful conversation with my friends that ignited my imagination and funny bone, as well as a few shared tears, met with empathy and love. The photos will be the rest of my description of the joy that is currently bursting in my heart.
I can’t thank my friends enough for helping me get back my courage to stay in a tent after a day of hiking and swimming. I have gotten my courage back to do this more often with my husband. I even talked my daughter into doing a short trip with me soon. My soul is nourished and my passion blazing again.
My blog is ONE-year old now. I have learned a lot from doing it. I’ve made friends from across the country and the world. I’ve learned from other bloggers how to live well with a chronic condition as well as how to blog better. It, too, ignites my imagination and gives me a purpose that makes me happy.
So, when I found out that I was nominated for two WEGO HEALTH Awards, I felt that this passion was also recognized by those who have watched my blog grow and those who I have hopefully helped in some way. It’s such a wonderful, supportive group that I have found through blogging.
If you are interested in endorsing me via the link below (just being nominated is really amazing), I humbly thank you. In my post for the end of this next week, I will be sharing out those who have most impacted my wellness journey, so that you, too, can learn from them (and endorse their nominations for WEGO AWARDS) if you should feel led.
I appreciate this time in my life that I am able to live my life fully (filling it with purpose and passion) alongside good friends and my family despite living with Fibromyalgia. I hope that I can help you find that for yourself as well as you journey through this life.
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.
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 in 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 Seppälä Ph.D. explains inPSYCHOLOGY 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. Seppälägoes 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 near 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 cacoon. I didn’t have it in me to drive, so my husband drove and visited with our daughter who lives in that town.
Joan, the owner of Branch Out Yoga in Fremont, MI, intentionally creates a place for community.
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 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.
So, 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 that we keep this going throughout the year. How can I connect with a community when I’m not feeling well?
On line 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 in negatives all the time which a few groups I joined and then dropped did.) For me: The Mighty (mental wellness group), FIBRO CONNECT on Facebook, North Country Trail Community on Facebook, and Twitter (following only those I want in my community: teachers, librarians, authors, and those with chronic pain).
Pen-pal or phone-pal arrangement can reconnect to 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 on Fridays. However, as you know,
my new normal means that some times I have to listen to my body and am
not able to follow through as planned. Thank you for your understanding.
Superstition and fate tend to take power out of our hands. Hope is the action-taking when we chose a positive future.
I don’t view myself as superstitious. But, I’ve been known to say, “Knock on wood,” now and then when I want to stave off something bad after declaring something good. As I’ve explained, my mom who had bipolar drilled into me at an early age that just as things are going well, life/fate will slam you with something equally not good. When I was a child, and actually now and then still now, I felt that there was someone watching over me, guiding me. That inner voice of mine always letting me know the choices I should make. Writing this blog comes from that inner voice, and I feel it’s there that my resilence through hope began. Last Saturday, as my husband and I sat and ate our dinner out on the deck in unusual peace, he brought up that he noticed I had been doing really well the past few weeks (not pleading for massages or whimpering in bed). I agreed. As written about in my last post, I really was feeling great. I got up with energy and didn’t have too much pain. I was able to participate in all that I had planned and able to fall asleep at night. I didn’t even take Bayer Back and Body! I had really been this way for a good 3 weeks. As I responded, I said, “Yes, I’m really doing well-knock on wood.” However, there was no wood on our composite-planked deck or in the glass and metal outdoor table and chairs. I gave a little laugh as I knocked on the metal armrest. A little bit of doubt or even fear flashed in my mind. (The saying knock-on-wood came from the long-ago belief that spirits lived in the trees; the first knock was to say your wish and the second for thanking the spirits for granting it in advance.) Much I have read about the brain, indicates that when there is despair about the pain and symptoms of fibromyalgia, the pain lives up to the expectation, and when there is hope that the pain will go away, the pain tends to subside. “Belief and expectation — the key elements of hope — can block pain by releasing the brain’s endorphins and enkephalins, mimicking the effects of morphine. In some cases, hope can also have important effects on fundamental physiological processes like respiration, circulation, and motor function,” explained Dr. Jerome Groopman‘s in his book The Anatomy of Hope. I don’t know if that tinge of doubt took over in the night, but Sunday, I woke up brittle and pain-filled. Since then, I’ve had more pain than those three weeks. I can’t really put my finger on the cause. Most likely, being I had less pain, I didn’t do the stretches and breathing as much as I had been doing. So, I’m back using my strategies of hotpad, hand massager, slow stretches to get out of bed. Then, yoga class either at the studio or at home using Gaia.com. Breathing consciously is a constant practice during my day, but I am taking time now and then to do the actual breathwork by lying done for 15-60 minutes while listening to my William Ackerman station on Pandora, which is one form of meditation. My pain reminds me to take care of myself. I don’t do it naturally. That’s been a huge lesson in my Fibromyalgia journey. And by taking care of myself, I’m then able to be there for my others. What I do know is that I continue to have hope that I can live my life. I can make a difference in my path even while life gives me variables that seem to be roadblocks. This is a part of my resilence that has been a part of me as long as I can remember. I always knew my future would be better. (That inner voice that I felt looked out for me.) In the article How Hope Can Help You Heal,Dr. James Lopez, psychologist and researcher states, “Hopeful people conjure a vision that sustains them, that causes them to show up for the hard work and accept setbacks…They make an investment in the future that pays off in the present: in the way they eat, exercise, conserve energy, take care of themselves and stick to their treatment plan.” The article goes on to state that hope is not wishing. Wishing is passive. Hope takes steps:
• Maintaining identity by continuing to participate in activities and relationships that help patients retain a sense of self outside diagnosis and treatment.
• Realizing community through formal and informal connections that help patients understand they are not alone in living with disease. This community is made real through conversation, visitation, consultation, and participation in daily activities.
• Claiming power by taking an active role in treatment by setting goals, self-advocating, monitoring and maintaining one’s own health.
• Attending to spirituality, activated through religious, spiritual and other contemplative practices.
• Developing wisdom, which involves both gaining pragmatic, medical wisdom derived from one’s own experience and finding ways to “give back.”
I would add one more, taking note of the daily small moments that bring you joy- taking time to be grateful. Many have heard about starting the day with a gratitude journal. I have made lists in the past. But that can get a bit automatic and repetitive, maybe insincere. For me, I’m working on stopping (like when I do my conscious breathing) and noticing the moment, relishing in it and acknowledging how blessed I am within it. The moments like while driving with my daughter, reaching over and holding her hand because she shares her deepest self with me. Or when my cat Scout, comes in the darkness of the early in the morning to lie down in the space next to my face, purring contentedly. Or when my granddaughter sits on my lap, cuddling us both in our softest blankey, to read a book or watch a “kitty vs balloon” video on YouTube. Or when, in the middle of the night, my husband and I both turn in the same direction in a wonderful synchronization. I want to take time to stop and purposefully notice these “little” blessings. They bring me hope.
Last week, my husband and I helped our daughter paint the outside of her house. I used the medium height ladder for my sections. I would move it down the line as I progressed. Now and then, I would need something like the spill rag or my water bottle which would mean walking under the ladder would be the easiest way to get it. I found myself debating, Do I want to chance it? The first few times I chose to go around the ladder. Seriously, thinking, Why tempt fate? But then, I chided myself that I was being ridiculous. So, I decided to throw caution into the wind and walk under the ladder. To me, that is one step in having hope vs wishing. Fate does not have the end say. I will continue to have active hope.
Thank you for visiting my blog today.
I am committing to posting once a week on Fridays.
However, as you know, my new normal means that some times that
I have to listen to my body and am not able to follow through as planned.
Beautiful Manistee River from NCT near Mesick, MI.
6:15 this morning, Scout, my grumpy-old-man orange tabby, is stepping on my head as I begin to come out of another dream that involves my alter-ego desperately racing through a maze of sorts (need an analysis of this 😄). As soon as he sees some consciousness from me, he begins to pleadingly meow for one of us to get up and feed him-thanks to his hyperthyroidism-getting old is tough even for him.
As the dream seeps out of me, the reality of my body pours in. This is every morning. Every morning when I feel swollen-filled up with wet sand in my arms, hands, legs, and feet. My body talks to my mind and says, “I don’t want to move. I don’t want to get out of this bed.” It’s a pleading that I spend one half to an hour every morning arguing with. Over and over I say to myself, “Get up. You have to get up.” I’m shooting for 7:00 to 7:15 each day, so that I stay on a routine for sleep. Sometimes, I get up and after a pee and brushing my teeth, I head to the kitchen to take the medicine and supplements that have helped me forge on. (I will post a list and reasons why soon.) On really bad mornings, I beg Kelley (who generally is already up having his morning coffee and getting caught up on what’s going on in the world) to bring me my meds. Generally, it takes about 30 more minutes for things to kick in, and I’m ready to move.
Today is a special day. I signed Kelley and me up for a group trip of hiking and kayaking. It’s the first such commitment I’ve made like this since being hit with Fibro and have actually followed through on. Friends, colleagues, and family know that since September 2018, I haven’t been a woman of her word. This has been really devastating for me. That has always been my motto- What I promise is what I do. However, I have canceled on commitments so many times this past year, I am now hesitant to prearrange anything at all.
But my heart, my longing, is to do the things I love: hang out over drinks with friends to talk, laugh, and cry, go for a walk in the woods, go to yoga class at 8am (would love to do the 5:30am, but not sure that will happen), commit to a new job, volunteer regularly, learn to play the ukulele at Thursdays Flybear Bookshop class, get down and play like a kid with my grand-daughter, Copeland, and so much more. The months of September through February found me mostly in my bed. December 7th was my first day of long term leave from my teaching career of 32 years. Those first few months, I barely did anything but try to be comfortable with heating pad, fuzzy blanket, pillow props, pain reliever, and sleep. I’d hear Copeland laughing and talking with her parents and Kelley in the living room. I’d drag myself out of bed determined to play, too, but soon realized that even just sitting in the chair was just too much for me. I’d slump back to my bed, many times crying uncontrollably for the loss I felt. I felt imprisoned in my own body and couldn’t see any way out of it.
The most debilitating part of Fibromyalgia for me has been the “Fibro brain fog” and the draining of ALL energy. (In a later blog entry, I will talk about what I’ve come to understand about why this happened to me.) In bed, I’d often find myself in a hurtful position and would stay there trying to convince myself to move for several minutes. It just seemed too hard to adjust how I was laying. The brain fog made it impossible for me to really attend to reading, writing, talking. I did start listening to audiobooks which helped me weather the worst of things. This time led to a deep sadness; I never wanted to use the word depression, but that’s what it was (and still is at times).
Showing Up, Anyhow
This morning, as the rain poured down outside our bedroom window, I reviewed every possible way of canceling (once again) and just staying home. Knowing we had to be ready to leave the house by 8:15 (with all the packing for the day still to go), I was really close. However, my search of the Weather Channel App showed that Mesick wasn’t going to have rain all day. I also thought about the work Kelley had already put into getting the trailer and kayaks ready to go last night, and the fact that this new like-minded group in our area of Newaygo County would be really good to get to know. If I canceled this time, how would I be able to show my face at another time after all the planning and communication that went into this trip? And so, as Kelley woke up and went to feed Scout and Willow, I did my morning routine (well enough to go get my own meds this time).
As I sit in the car writing this entry on our way to meet up at Manistee River Launch-Hodenpl Dam, my body is again pleading with my mind and heart. “I can’t do this! I’m not up for a four-mile hike and then kayaking down the Manistee. Can’t you feel the sand-filled, noodly arms and legs?” Yes, they both reply. But, I’ll open the door when we get there and step out into the dirt road, smiling at Mike who will be driving us up to the trailhead. One step at a time and soon I know I’ll be feeling strong again. Just hard to convince my body of that.
I will write in an upcoming blog how I’ve gotten to this point; many, many nurturing supports. Certainly, not my willpower. I have come to celebrate my strength and courage, knowing that it’s fed and cultivated one supported step at a time.
What a wonderful day spent with wonderful people:)
After the Trip Update We’re home at 8:58! Wow, that’s a long day for me. However, I’m feeling happy and energized. The day was perfect and the group of people- wonderful. I felt connected with “my people” right away. Soon after stepping out of the car, I was able to “turn on” and the pain and weakness soon went away during the walk. I had little noticeable pain through the 4-mile hike and most of the 10-mile kayak. Towards the end, I had to do my stretches (I’ll get into that in another post) because my neck and shoulders were seizing up. However, at the end of the trip (at Red Bridge which is really white in color), we were met by a stiff gin and tonic with lime. That made all my stiffness go away😊 Now for some sleep (hopefully).
How do you handle commitment when you’re not feeling so great? I sure would love to find a way to determine when it’s good for me to push myself to show up and when I need to pull back.
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.