Let the waters settle and you will see the moon and stars mirrored in your own being.
-Rumi
There are places that shape us before we’re even old enough to understand what’s happening. Places that imprint themselves on the soles of our feet, in the rhythm of our breath, in the part of our memory that feels more like home than any house ever could.
For me, that place has always been Diefenbaker Lake.
Some places are so deep inside us that we carry their shoreline in our bones.
-John O’Donohue
I’ve been coming here since I was tiny. Even before I had words for belonging, but somehow already knew I belonged here. Grandpa always made sure of that.
My grandparents had a cabin and a sailboat tucked along these windswept shores. Some of my earliest memories are stitched together with the smell of woodsmoke from backyard fires, the sweetness of my grandpa’s violin, and the rowdy chorus of siblings and cousins running wild between the cabin and the water. With the constant reminder to “wash the sand off your feet before you come in!”
And then there were the cozy, indoor moments that stitched themselves into my heart just as tightly as the beach days. Evenings around the table playing Phase 10, some of us a little too competitive for their own good. And we watched Bedknobs and Broomsticks over and over and over again. Never questioning why, just letting the magic and music wash over us like it was brand new every time.
Mornings were their own kind of ritual. Waking up to Grandma making bacon and something (it didn’t matter what, it’s the bacon that mattered) and the smell of fresh coffee drifting through the cabin. To this day, I associate the scent of coffee with pure happiness, because it always meant family, warmth, and the safe little world we built at the lake.
Teenage awkwardness made an appearance here too, because of course it did. Blushing, fumbling romances that felt monumental at the time. Even with his hair plastered to his face. Perhaps this was done by those winds that could have knocked over a small cow 🤔.
Speaking of cows. They are a regular feature of this lake that is surrounded by pasture land. Two rules. Don’t use a cow as a landmark when giving directions. They tend to move eventually. And don’t pick a beach with a cow path into the water. You can guarantee there’s a few cow pies in there.
Swimming lessons were basically an extreme sport back in my day. With waves bigger than me, wind that felt like knives, and instructors yelling cheerful encouragement while I questioned all of my mom’s life decisions that brought me to this point.
Still, I kept going back.
I lived for the days Uncle David would haul out the power boat. Kneeboarding, tubing, laughing so hard my face hurt. Those were the moments that made childhood feel endless. We’d tear down the path to the beach, towels flying behind us, younger siblings and cousins trailing like joyful chaos. We swam, we snacked, we visited, we repeated. Every day was an epic saga of sunshine and soggy towels.
Sailing days were their own kind of magic. My mom loves to retell the story of my sister and me being so little our feet didn’t touch the floor as we sat at the table down below. Meanwhile grandpa and dad were tacking hard and smiling harder. Every time the sailboat leaned, we’d just… slide helplessly under the table like tiny bewildered penguins. Apparently we were adorable. At the time, I remember thinking, Is this normal? Are we sinking? Should I be able to see the lake out that window?
Dad and grandpa were always smiling so I took that to mean we were safe.
As I grew older I loved sitting at the very front of the sailboat, facing forward, wind whipping around me, I felt like I was flying. When the water was calm, the spinnaker would make an appearance billowing out like a living thing. My grandpa worked the ropes and held the tiller with the easy smile that only comes from loving a place so much. Those are memories I hold like treasures.
My youngest son a few years back in his favorite spot on the sailboat, that front seat.
And now seems like the appropriate moment to confess something to my parents…
I did, in fact, steal the keys and “borrow” the cabin for one weekend as a teenager 😬. I had “a few friends” over. I threw exactly one party in my entire life. And I was so sick with worry the entire time that I basically grounded myself for the rest of my adolescent years. Lesson learned. Sorry. Mostly. It’s been a good story over the years.
I spent my honeymoon at the lake- 26 ½ years ago. We fished, built sandcastles, and solved the great riddle of rural Saskatchewan: there are no gas stations open on Sundays. (At least, not back then.)
About five years ago, my parents bought their own place by my lake It took a some time but something inside me reconnected. Something long since silent woke back up.
I listen excitedly to hear about the ice breaking in the spring. The booming, cracking, shifting sound like the earth stretching after a long sleep. Then, in an instant it seems, the ice is gone. Summer brings shimmering waves, familiar laughter, and barefoot days that always feel too short. Fall arrives in gold and red and farewell winds. Winter… winter brings a darker, quieter beauty. A solemn stillness that somehow feels honest. Vulnerable.
The older I get, the more I find that the quiet places are the ones that speak the loudest.
-Unknown
We’ve camped along these beaches. We’ve laid in the sun. And now, when I head out on my power boat with our next generation, I think of Uncle David. I feel him in the hum of the engine, in the ripple of the wake, in the bright splash of joy that comes with speed and water and family.
The pinnacle of our lake experiences has to be when we helped save our friend’s boat from sinking. When the bladder around the leg came off and they started taking on water, they quickly headed to the boat launch. Seeing they wouldn’t make it, they beached the boat. Then with two other power boats and a cacophony of helpers, they managed to get two boat tubes under the leg and the front of the boat. One of the support boats towed. Two people bailed. People sat on the tubes to balance. And in this ridiculous state we slowly made our way through the marina and up the launch. To the laughter and cheers of watchers nearby.
I have found beauty in the whimsically ordinary.
-Elissa Gregoire
These days I walk the trail by my lake often. I slow down. I breathe.
And somewhere along the way, I realized,
This place has become part of my healing.
Chronic pain forces you to live differently. More slowly, more intentionally, more gently. Forest therapy taught me to seek connection with the natural world, to let my nervous system rest in the presence of trees, water, sky. And here, wrapped in the sounds and rhythms of my lake, something in me softens. Pain quiets. My body remembers safety.
When the heart is overwhelmed, the earth invites us to rest.
-Unknown
My parents host endlessly now, filling their summers with family, friends, neighbours. Anyone who needs a taste of peace.
They are the sailboat owners. And they love it just as much as my grandpa did.
The legacy continues, like wind passing from one generation to the next.
My lake is healing. This home of my parents is healing.
And after all these years, I am still finding new ways to belong here.
There are days the lake knows my story better than I do.
-Unknown
Fluctuat nec mergitur (latin phrase):
She is tossed by the waves but does not sink.
An Ode to My Lake
O Lake of my childhood, keeper of my summers,
You who taught me courage in cold waves
and laughter in the spray of speeding boats
I return to you again with a heart that remembers.
You cradle my earliest joys.
Grandpa’s violin threading through evening air,
firelight warming our faces,
cousins tumbling down the path like wild things set free.
You were witness to awkward teenage hopes,
to frozen swimming lessons and winds that stole my breath,
Sometimes my life feels like a forest—dense, shadowed, and uneven.
Everyone else seems to walk a wide, sunlit path: their maps are clear, their steps steady, their packs light.
Meanwhile, I carry heavy bundles of pain and medicine, stumbling often, wondering if I’ll ever catch up.
~Cue the tiny violins 🎻 🤭~
Beyond the Familiar: Embracing a Different Forest
My therapist keeps telling me to stop comparing myself to other people – that life’s not a competition. Which, to be fair, is exactly what I’d say to someone I was trying to beat, too.
Comparison is never useful. It’s like measuring trees by how tall they look in someone else’s forest, forgetting that soil, roots, storms, and sunlight differ wildly.
Or like judging an oak tree by how quickly the wildflowers around it bloom. Different roots, different seasons, different reasons for being.
And yet I fall into it—measuring my path against someone else’s trail, forgetting we are not even walking in the same terrain.
Comparing … is a waste of time and effort; we are all different people, experiencing and feeling things differently.
San Diego Prepare Yourself: Sisterhood Adventures Await
Next month, my sisters will gather in San Diego. I am so excited for them. And to hear about their adventures. Sunshine, laughter, time to connect. It’ll be fabulous.
I would love to be there. But the cost of my monthly medicine is about the same as what that trip would take.
I live in a different economy—the economy of pain management. So instead of boarding a plane, I stay home.
~Poor lil’ me 🥲👉👈 🤣 ~
It’s hard not to compare. Their togetherness, my absence. Their momentum, my stillness. I remind myself that longing is not failure—but it still stings.
Screenshots of a Life I Don’t Live: Family Call, Personal Spiral
On a recent morning: my sister called from her vacation in London. On a family video call. At 9 a.m., I was still coaxing my muscles awake.
I listened to the bagpipes she was sharing and checked out the sights in the background. I marvelled at what she has been able to accomplish and see in her life. I joy in her success.
Inevitably another emotion starts to rise. As on the screen, this is what I see:
One sister in her home office, thriving in a job that suits her perfectly.
Another in her kitchen, caring for her family and home.
A sister-in-law outdoors, likely at the park or on a walk with her two littles.
My parents smiling in their living room, enjoying retirement and seeing their family.
And then there was me—tired, clearly still in bed, clearly accomplishing nothing.
That’s how I saw it. In truth, no one said that. But comparison painted me useless in bold letters across the screen.
~Woe is meee 🐌💤 😜 ~
A Sermon I Couldn’t Speak
At church, I tried to answer a question on a bad pain day after a sleepless night. My words came tangled, incomplete.
I saw my husband’s face and thought, I’m taking too long. I gave up. Without tying my random thoughts together. And I gave him the microphone. He expertly gave a clear, concise answer that was perfectly on point. My effort looked weak next to his polish.
“My brain and I, we are not friends. My brain and I, we are classmates doing a group assignment called Life. And it’s not going great.”
But here’s the truth: trying counts. Even stumbling words are a kind of courage.
The Math of Measuring Up Never Works: The Broken Ruler I Keep Using
Comparison is a thief. It always leaves you with less than you started.
It’s like weighing a feather against a stone and expecting the scale to balance it out. It demands a sameness life never promised. It blinds us to the worth in our own story.
As a people, we tend to magnify the strengths and blessings another person receives. But minimize our own gifts, talents and opportunities. Social media is as helpful as a screen on a submarine when it comes to perpetuating this problem.
There’s no hierarchy of pain. Suffering shouldn’t be ranked, because pain is not a contest.
Fear and scarcity trigger comparison and we start to rank our own suffering.
Brown calls this comparative suffering. She goes on to say,
The opposite of scarcity is not abundance; the opposite of scarcity is simply enough.
Empathy is not finite, and compassion is not a pizza with eight slices. When you practice empathy and compassion with someone, there is not less of these qualities to go around. There’s more. Love is the last thing we need to ration in this world
This toxic pattern of comparison blocks emotional processing and prevents genuine empathy, creating isolation rather than connection.
My worth is not judged by what I do in comparison to others, but by what I do with what I have—what love, what compassion, what presence I can offer. Even just in showing up.
Measuring By Love, Not Ladders
I’ve decided to measure my life by something else: in every conversation, I want the other person to leave feeling better about themselves than when we started.
If they do, then I’ve accomplished something real. It may not be a promotion, a trip abroad, or a picture-perfect moment. But it’s love, and it’s within my reach.
In such a headspace there should be no time for shame and comparing. Only felicitations and adulation.
Broken But Still Moving
Mandy Harvey is a singer/ songwriter. I saw her on an America’s Got Talent clip. Mandy lost her hearing when she was 18. Interestingly enough she has EDS which is similar to my connective tissue disorder.
On the show, she spoke about initially going to dark places. And when she decided she wanted more for her life, she wrote this song. And performed it in front of a live audience and judges and cameras.
She beautifully sings,
“I don’t feel the way I used to / The sky is grey much more than it is blue / But I know one day I’ll get through/ And I’ll take my place again… So I will try…
There is no one for me to blame/ Cause I know the only thing in my way/ Is me…
I don’t live the way I want to/ That whole picture never came into view/ But I’m tired of getting used to/ The day
So I will try..
Those words hold me when comparison tries to unravel me.
Forest Therapy: A Way Forward
If comparison is a thorn, forest therapy can be a balm.
The forest floor is messy. Layers of leaf litter, moss, dead wood. It doesn’t pretend to be clean and perfect. It is rich because of its imperfections.
Your struggles, limitations, pain give richness and texture to your life story—not flaws to hide.
Walking a path in woods, you may have to step over roots, navigate mud and stray branches. But each step gives you awareness, grounding, breathing space.
Comparison often makes us spin like leaves in the wind; forest therapy anchors us.
When comparison grabs tight, I go to the woods.
The forest does not compare:
Trees don’t measure their height against one another.
Moss doesn’t resent the ferns.
Streams don’t ask why the river runs faster.
Each element grows where it is, as it is. That is enough.
Roots, Rituals and Small Resets
Here are ways the forest has supported me:
Leaning against a tree and letting its rootedness remind me that I, too, belong.
Listening to the birds until my thoughts soften.
Sitting by water and imagining my comparisons floating downstream.
From Forest Floor to Open Sky
Yes, I still compare. Yes, it still hurts. But when I remember that comparison steals joy, I find space to choose something else.
I may not be in San Diego, or London, or even fully awake at 9 a.m. (to those who are, Have as good a time as possible, given that I’m not there. Heehee 😊)
~Life said nope 🙃🍋~
I can still offer kindness, presence, and love.
And maybe that is enough.
I want to feel good about my life. Not in the sense of “as good as anyone else,” but as my life, full of the shape I have.
Chronic pain is part of the soil I grow in. It’s changed what I can do, yes—but also deepened what I can feel, what I can appreciate.
If everyone else seems to be walking on sunlit paths, I may be walking in dappled shade, or in a different time of day. But my path is still mine, and still worthy. Because even in the shaded parts of the forest, light still filters through.
If I stand on my tip toes I can see autumn from here.
-Unknown
There are nights when pain feels like a forest fire. It consumes everything, licking at nerves, muscles, and bones, until even the smallest ember becomes unbearable. For me, forest therapy has always been a refuge—trees that don’t ask me to explain, the wind that listens without judgment. But no walk in the woods can erase the reality of the deep harm that comes when the medications I rely on are suddenly out of reach.
Biophilia
the ancient memory that li ves in our bones- a quiet longing to belong to the earth, a deep and sacred bond that awakens our senses and nurtures our souls.
Tales from My Trek
Recently, I went to fill my prescription. It’s a narcotic, tightly controlled with a note that says it can only be filled every 30 days. The problem? It was day 29, and I was out. 😳
For some prescriptions, waiting until the next day is an inconvenience. But when you’re on a heavy narcotic at the highest dose, one missed pill isn’t just painful—it’s catastrophic.
That night without medication meant I wasn’t just “in pain.” It meant shaking, twitching, and detoxing against my will. For a medication I’d have to take in the morning!
I’ve missed this pill before. My body, already fragile, spiraled: my nervous system hijacked by fight-or-flight, my hormones in chaos, my temperature regulation broken. I’d overheat, then sweat, then shiver, round and round. All while my pain screamed louder and louder. It is my definition of Hell.
And the damage doesn’t end when the sun rises. One night like this unravels days—sometimes weeks—of careful work to bring my nervous system into alignment. Forest therapy sessions that usually soothe my body’s alarms are erased by the fresh trauma of unmanaged withdrawal.
One pill—just one—becomes the difference between fragile balance and collapse.
The Pharmacy Door 🚪
This wasn’t the first time.
Years ago, when I was short on medication, it was actually the pharmacy’s mistake. A tech who knew me—a kind soul who remembered my name—looked closer. While others repeated, “Sorry, you can’t have more. Come back tomorrow,” he dug into the records and discovered their count was off by the exact number I was missing. He trusted me. He believed my story. He saw me.
This time was different. My tech friend wasn’t there.
When this new tech told me I couldn’t have more until tomorrow, he must have seen the terror in my eyes. Or noticed me standing in shock for 5 minutes. Just standing by the pharmacy. Holding back tears, while physically and mentally spinning in circles. But instead of offering solutions, he shrugged and said, “Come back in the morning.”
Being someone who hates to cause a stir, I went home. But home is where the panic broke through. I sobbed uncontrollably. My body already gearing up for withdrawal.
Then I realized: silence won’t help me survive this.
I called back. I asked about options. The tech said I could talk to the pharmacist. Why wasn’t that offered before? 🤨
When I spoke with the pharmacist, his tone was dismissive, almost mocking: “So what do you want me to do about it?”
I explained again, told him what would happen if I went without. He finally asked if I’d even come pick it up that night IF he were to fill it.
Sir, I thought, I just told you what a night without it would do. Do you think I’d let that happen if I had any choice?
Eventually, he relented and filled it twelve hours early. I picked it up feeling like I should bow at his feet in gratitude. As if he’d granted me a favor rather than spared me a night of needless suffering. I felt the need to thank him repeatedly.
The petty side of me still wants to send him a Get Better Soon card. Not because he’s sick. But because I think he could do better. As a human being. I’d have to send it anonymously because this is not a person I want to be on their bad side.
The Bigger Picture
I know narcotics require tight monitoring. I know the system has to guard against abuse. But what about patients like me—the ones who never asked for this, who were put on these medications by doctors, and who don’t have the option of just going off of them. When there is something physiologically happening that is not right.
If only I could put into understandable words. This is what is happening everywhere in my body. ☝🏼
Why does losing one pill make me look like a drug seeker? Why is my lived record of years not enough to earn trust? Why is the assumption always suspicion?
Do they want me to be all natural? Do they realize it is people like me who keep them in business? I literally pay their bills!
I wouldn’t have to if I could live every day in the forest—if I could soak in the mossy quiet, breathe in the pine air, let the gentle rhythm of birdsong reset my nervous system—perhaps I wouldn’t need the pills.
But my reality is different.
My reality is managing chronic pain in a system that too often treats me like the problem instead of the patient.
🍂 Whispers of the Woods
As I write this, I think of a line from poet Wendell Berry:
“The care of the Earth is our most ancient and most worthy, and after all our most pleasing responsibility. To cherish what remains of it and to foster its renewal is our only hope.”
What if the same was said of patients? To cherish them. To foster their renewal. To see them not as potential criminals but as human beings navigating unbearable pain.
Another lesser-known verse comes to mind from Antonio Machado:
“Between living and dreaming there is a third thing. Guess it.”
For me, that “third thing” is surviving. It’s clawing through nights without medication. It’s cobbling together therapies—like time in the forest—that offer some relief, though never enough.
Compassion: The Heartbeat of Humanity
I don’t have the solution. But I do know this: when we treat patients like addicts instead of people, we add more pain to lives already saturated with it. I believe we can find a way to monitor responsibly while also practicing compassion, dignity, and trust.
So I’m asking you: have you experienced something like this? Have you been caught in the impossible bind between regulations and your own survival? Do you have ideas for how this system could better serve those who truly need it?
Share your thoughts in the comments. Let’s start a conversation. Because one pill shouldn’t have the power to undo everything.
It was a lovely afternoon-such an afternoon as only September can produce when summer has stolen back for one day of dream and glamour.
In today’s post I’ll be sharing more about my joint hypermobility diagnosis journey. Due to brain fog and the length of time this went on, my chronological ability is a tad sketchy. Regardless, the emotions and the pain of my story are real.
I hope you can’t relate to my story. But I’d love to hear from those of you who have also experienced a diagnosis nightmare. Particularly those with hypermobility.
From Spark to Flame
In the spring of 2011 I was tired of the sharp pain in my left armpit. It had been happening on and off for years. I didn’t have the brain power or the time to deal with it. I had three little kids instead.
That year I planned on going back to work as an EA. My kids were school-aged. And I was going to take the EA course that fall. Being on my feet more often without the ability to rest when I needed was a game changer. But not in a good way. Sitting in a chair for 6 hours a day for school was brutal.
The Beginning of a Beautiful, Medically-Invoked, Friendship
I started seeing a physiotherapist. She was heralded as one of the best diagnosticians of joint and muscle pain in town.
I will be forever grateful for the referral that sent my brother to see her after his knee injury. Which led to a referral from my mom that I should see her.
She has been with me from that time. She has saved my life in more ways and more times than I can count. She is my superhero.
From our beginnings, J walked by me through the process of navigating the medical field. With chronic pain. As we became friends and she learned about me and my family, she also became a trusted counselor. As she saw me opening to other forms of therapy, she shared her knowledge of energy therapy. When she learned my kids all have ADHD like their dad. She gave me hope and help on that subject too!
In her role as a physiotherapist, if she’d had the authority to order tests. I believe my diagnosis journey would have been completely different. But that is neither here nor there. Because I did not have access to a comprehensive team of doctors. I was the one running between and trying to pass on messages. I got them mixed up or had incomplete information. The doctors didn’t seem to care what J had to suggest.
So while J kept putting me back together and giving me exercises, the doctors kept telling me I was fine.
Doctors: Just work with a physiotherapist. It’s not a medical issue.
On the other hand, I would sneeze and feel something rip and go cold in my left shoulder blade area. I’d go see J and she’d fix me.
I’d wipe a counter and the same sensation. Back to J. She suggested something deeper was happening. (of course all she can do is find the spots that need fixing and fix them. She can only work with the effects something is having on the joints. She cannot see or fix the joint itself. Only its placement in the body,)
Coldplay Has Got Nothing on my J: She Will Try To Fix Me
I’d fight with doctors to give me an ultrasound. I’d experience deep pain in the exam as they shoved the paddle into my abdomen and groin. Often trying to locate missing organs. They always showed up eventually.
***TEST RESULT NORMAL***
Chiropractors.
***DIAGNOSIS: you’re out in a few spots. *crack*
Me: (walking out the door and looking down to step over the ledge)*crickety crack crack pop*
I’d go back to the doctor. Same procedure every time. They’d want to know where the pain was coming from. (everywhere) They’d ask how the pain felt. (depended on the day) They’d ask what made the pain worse. (being mobile, living my life) They’d want to know what made it better. (laying down, not moving)
“Well Pam, you can’t lay on the couch and expect to get better” (actual comment from an actual doctor that had a quick chat with me over the phone, I thanked him)
Me: Thank you. Good day.
Doctor: There might be something I can do, just don’t get your hopes up.
Me: I said Good Day
(maybe not those words but that was the tone)
This was always hard to hear. I had been running and working out before the pain got unbearable. And then I’d try again. J would ask when the pain started. (the day after I tried to jog. I just lifted 5 lbs a few times and then a few more the next day, etc.) I’d flare. My joints would be less stable. Back to J. She was always so kind and just put me back together.
I wanted nothing more than to run and workout. The doctors would have me move this way and that. Lift this arm. Touch the floor and come back up. Any pain? Now? Now? (nil, the pain would surface the next day though, and it would bring reinforcements.) But the appointment was over and the doctor wasn’t there to see that happening. So it wasn’t in the charts.
I don’t know what my doctors wrote. But due to no further investigation, I am led to believe it was something like the following.
***DIAGNOSIS: Kinesiophobia (fear of movement)/ Agoraphobia (fear of open situations: due to potential for unexpected pain and inability to attend to it)***
Back to J. She would put back all the spots that the doctors had unwittingly subluxed with the tests. J looked at the pattern.
***diagnosis: extreme hyper mobile joints*** but this was not a diagnosis the doctors wrote down or understood
Diary of A Misunderstood Patient: “I Tried to Tell Them”
I don’t blame the medical professionals in the beginning. But as the situation went on and I tried to tell them how this would go.
“I will do the tests. It will not cause me pain now. Because I have extremely mobile joints. And tomorrow due to shifting and stretching those joints outside their comfort zone, they will sublux. The pain is not in that shift. The pain is from the muscles that are left to hold that spot together. Now that the joint is no longer capable of doing its job. That muscle will get more and more sore as it holds and holds anytime I am mobile. It will eventually give out. Another muscle will get involved. And so on down the line. While this is happening this joint will have more stress on it. Initially just the joints around the unstable one. But eventually leading to my main muscles and joints. It will cause great pain.”
Doctor: OK, so you can do the test?
Me: (blink, blink) Yes
Doctor: If I don’t do this test, I can’t diagnose you.
This became the answer from specialists I waited months to see. I couldn’t give up the chance for answers. So I would do the test.
***DIAGNOSIS: NORMAL***
***TEST RESULTS for their specific specialty: NORMAL***
Back to J. She would inquire how things were going as far as tests and treatments from the medical side. I saw pain in her eyes as she saw the misery and agony I was going through. In this process. And physically.
It was draining the life out of me. J was always careful not to complain. She would never say anything unkind or unhelpful with reference to doctors or their way of doing things. It was as though she had been there herself. And was at peace with it.
The Final Act: With Room For Improvement
During my “end-of-the-line-of-specialists” appointment with a rheumatologist I broke down. I sobbed to her. Something was wrong and nobody could find it. Everything was coming back normal. She said it had nothing to do with her specialty. But she would send in a request for an MRI.
I wanted this test to show something so bad. It seemed like such an odd thing to hope for. To be diagnosed.
I had the MRI. I waited to hear back from my family doctor. She said they found a tiny bone spur. In my shoulder blade region. It was creating inflammation in the tissue and everything else in the area. Every. Time. I. Moved.
***DIAGNOSIS: bone spur***
I felt validated. Finally! Someone saw something! My pain was real!
I waited to see a shoulder surgeon. He told me my bone spur was so small they normally wouldn’t operate on it. But I did have a small area for it to fit. So if I wanted they would do surgery. Um yess please. Please fix me.
***TREATMENT: surgery to remove “tiny” bone spur***
I waited more months to hear when the surgery would be. Then I waited months for the actual day.
I should mention that through this time I was also diagnosed with endometriosis and its ensuing pain and surgery. Every couple of years they went in to scrape out the scar tissue. And put my organs back where they were supposed to be. I was having more and more trouble recovering from surgery. The internal inflammation was crazy.
The Road To Being Un-Recovered
After my shoulder surgery I was so relieved to have that nasty scoundrel out of there.
But the recovery from this surgery was particularly difficult. The years of waiting for the next specialist. The next test. The next referral. Had worn down my body. Months of lying down whenever the opportunity presented itself at the end of a workday. The end of putting kids to bed. The end of the cleaning and laundry. It always had to wait. But the lying down instead of working out were creating more tell-tale signs that something was wrong.
After this surgery. My mouth had a pesky sore on it from the breathing tube pressing my lip between it and my teeth. Making it hard to eat anything. The pain of the gas they pump into you, moving up and out, was almost unbearable. It felt as though parts of me were being ripped apart.
The shoulder pain where the surgeon had used a knife and some did some cauterizing was fine. But the neck pain where they had twisted my head to get the right positioning. Had caused several exceptionally painful subluxations there.
I had to wait a certain time before I could see J following the surgery. It was agony. I was propped and pillowed. I used my cold therapy machine for my shoulder on my neck instead. Nothing helped. The strong meds they give following surgery are only prescribed for a certain time. I get it. My inflammation in my mouth (now I understand that was due to thin lining of my lips and mouth). My internal inflammation from the surgery. My unbearable pain in my neck. Were just starting to ramp up.
I called my doctor. She reluctantly, out of the goodness of her heart. Prescribed a few more but that was really all she could do. No more!
***DIAGNOSIS: drug seeker***
I suffered so much during that time.
It took most of a year to see the inflammation go down. About five years until I didn’t notice its effects anymore. So that tiny little bone spur had me struggling to workout for years.
Medicine vs The Patient
I never got to the point where that was fixed and all was well. Because during those years I also had pain and inflammation with my endometriosis. So many medications and therapies were offered that did not support my needs as a hypermobile patient. According to all the specialists, that diagnosis didn’t apply to what they were doing.
Somewhere in the following years my SIL told me about a syndrome she’d heard about on a show. It sounded a lot like what she knew about me. I have had so many suggestions from those who mean well. Making it hard to listen to them all. But this one stuck. Once she mentioned it, I noticed it being talked about in other arenas.
Ehler’s Danlos Syndrome. I did some research and it sounded like a plausible diagnosis. I mentioned it to my doctor and they dismissed it as a diagnosis that you either have or you don’t. There is no treatment. She ran through a few tests and didn’t mention it again.
I had a hysterectomy that fixed some issues but created a host of others. A story for another time.
I switched doctors. Again. A painful but necessary process every time. This doctor wondered why previous doctors hadn’t gone through the Beighton score tests.
We did those. I passed with flying colors in one section. But didn’t quite meet the qualifications in another. So technically I don’t have EDS. But I have hypermobility. Which nobody in the medical world other than J, seems to think is an issue. My doctor has ruled it out. Due to being one check mark shy on a page.
It isn’t his fault. But without that mark I am still just a kinesiophobic, agoraphobic, with unknown causes of depression and anxiety. Quite needy and schedules multiple pointless appointments. Low pain tolerance. Who lays on the couch all day and expects to get better.
From Limitations to Peace
Through the years, I tried to get stronger physically. I couldn’t run. It put the bones in my feet out. When I tried to do functional movement, one joint or another did not like it. Inflammation, subluxation. Back to J.
She would give me gentle movements to keep my functional movement in check.
A slip on ice. Run into by our pig. Dog head to my thigh slam. Another slip on ice. Mowing the lawn putting me into spasm (we lived on an acre and mowed with a push mower). Cleaning a pool. Bending into the fridge the wrong way. Sitting to teach piano. Stand you say? That creates the need to bend over to point at the page. I tried everything. Yet by living my life, my bones would inevitably shift and get stuck.
Where a typical person’s joints would not bend that far. Their connective tissue would hold them together. Protecting them from a subluxation.
In 2020, unrelated to the pandemic that was ramping up, my body was shutting down. The years of pain from living with unchecked torture, had taken their toll.
My nerves were showing more and more signs of wear and tear.
Over the ensuing years, I was seeing less medical specialists and more natural alternatives. I was finding my way to my healing.
More diagnoses from a naturopath. At first I dismissed them but now I feel and see the effects daily. #theydoexist
***TREATMENT: rest when you can, listen to your body, supplements, etc***
I saw a holistic health practitioner at the end of 2020 when my mom thought I was going to die. We were living with them on the farm at the time. And she saw what was happening. The strain my body put on me. And that my ability to fight back was waning. She was right. I see it now.
From then on, I listen to those who tune in instead of out when I mention those diagnoses. And healing has followed.
Diagnosis: Indifference to the Unknown
I still have no hypermobile condition diagnosis. I don’t really care anymore. I have found a community in those with EDS and other hypermobile joint conditions. As I listen to my nerves, my body designs a space for mending to transpire.
Treatment: Based Solely on the Needs of The Patient, Me
Energy work and emotional healing has been critical for means of growth.
The forest incorporates it all. Energy work. Emotional healing. Physical effort (not past your limitations). Rest (to the bones, spiritual, emotional, mental). Creating better pathways for focus (through awakening the senses and meditation and creativity).
Perks of Nature: The Phenomenon of Forest Therapy
Plus the benefits we garner solely based on practicing forest therapy. A stronger immune system response. Lowered cortisol (less stress). Improved mood (decreased tension, increasing feelings of vigor). Cardiovascular benefits (decreases blood pressure and reduces heart rate). Sharpened cognitive activity (increased function in the prefrontal cortex). And plenty more.
I have medication for my nerves which keeps most of the buzzing under control. And another for my “mystery” anxiety and depression. I believe there is a place for the medical world. It serves a vast purpose. But it did not serve me when I needed it.
I do not blame any person or hospital. I strongly believe the dilemma starts from a lack of proper education and awareness surrounding chronic pain. And where it is coming from. Not every diagnosis has a box to check yet. When the symptoms and diagnoses are not lining up for anything in the medical books. Listen to the patient.
You’re the Bee’s Knees, Thanks for Being Here!
To those who listened and payed attention and supported. Thank you. To my mom. To J. And to my SIL who saw a show and put more 2’s together than all my doctors combined. Thank you.
To all who read this far. Thank you!
Some of you will find reading a blog enough. But some of you will want to dive deeper. That’s where I come in. I have the desire to share what I have learned. Through the practice of forest therapy. If you’d like to see what forest therapy is all about and why a guided practice can take you deeper. Go to my How To Get in Touch page. And send me a message with your name and contact info. I will be sure to include you in my next forest therapy session.
🎵 Into the unknown! Into the unknown! Into the unkno-o-o-own! 🎵 And I’m okay with that.
Chronic Pain Unveiled: Wisdom That Shifted My Mindset
In the midst of chronic pain and disease, the thought that life is magical? Ha! Ludicrous!
During the days of my worst pain, it was difficult to see anything other than myself. Pain makes us turn inward. To see what is wrong and what we should do to alleviate the suffering. In a chronic condition, over and over, those efforts to treat inwards are unsuccessful. From such a position. I did not have a good sense of what I had to offer the world from my bed. I lost track of who I was.
If you think you are too small to be effective, you’ve never been in bed with a mosquito before.
Then I started to read quotes such as the following:
On the days you have only 40% and you give 40%, you gave 100%.
This was big news to me. I thought giving my best meant wearing myself out. physically and mentally. Disregarding any symptoms of unease. Only then could I say I was doing my best.
On your worst days, you have to believe that there is still something beautiful left inside of you.
I thought this was a good concept but I didn’t believe it until I did the work to see it.
experience taught her. hurt raised her. neither defined her.
-adrian michael
Believe there is a great power silently working all things for good. behave yourself and never mind the rest.
-Beatrix Potter
I Am Not Unique and Our Purpose Here
I am one of many who have been witness to miracles in their life. I am also one of many who have witnessed a lot of pain. My hope is to find followers through this blog. Those who will get a boost from what I have to offer. Who are struggling in some way. That is what makes my pain worth the cost. If it can be of some good. My hope is to share what I have experienced so that others won’t feel so alone on their darkest days.
After reading these and other such quotes. I sensed a budding clarity. I started to think maybe there were enough pieces of me left to work with. As I focused my efforts to rest and only move when I needed to exercise. I read and listened to uplifting and motivating books and podcasts. I used my days to take in relevant information. And I learned from the experience of others.
Months turned to years. I was starting to put the pieces back together. One at a time. I still don’t know how they all work together. Often the process is one of trial and error. But I know when something is right for me. When to put in effort knowing I will reap the benefits in time.
A Delicate Dance of Emotions: E-VALUE-ation of Self
Kaiho
A Finnish word meaning “longing” or “nostalgia”, even a “hopeless longing”
At that time, I still longed for the life I had planned. I acknowledged a feeling of kaiho, I knew my planned version of me would never come to existence. I think it was important to have a time of mourning and to admit the loss. But I didn’t want to live in the neighborhood of kaiho. Although I do visit from time to time.
As I came to better understand my chronic pain, I learned to live in this new body. I learned to listen better to my soul. My body and spirit. And less to my mind. I learned that my mind will lie to me. But my body and spirit, if positively aligned, will never lie to me. They will always direct me to my highest good.
I no longer feel like a few mental illnesses stuffed in a trench coat, stumbling around. Trying to portray to the world that I am fine. Those mental illnesses are part of me. They are part of the fire I have been through. A monument to the cost of dark experiences.
I cultivated an understanding of ways that brains work. How they will first ask, ‘Am I safe?’ they will ask, ‘Am I loved?’ when the answer to both of these question is yes, then they can be open to learning and growth. I could see why my growth had been stunted for so many years. I would not have been able to answer yes to both.
The Quirky Cravings of Our Bizarre Species
I studied the needs we inherently have as human beings. I started to meet those demands for myself. Instead of expecting anything from others.
Connection: we all have a desire for belonging and acceptance from a community (I built a community where I feel heard, seen and loved)
Meaning: to have purpose and to matter, learning, growth, creativity, and consciousness
Autonomy: to be independent, to have the freedom of choice and space
Play: sprinkling in humour and joy, even silliness to the mix
Authenticity: to be able to trust and show a genuine illustration of ourselves
The degree to which a person can grow is directly proportional to the amount of truth they can accept about themselves without running away.
-Leland Val Van De Waal
Harmony: everyone needs a level of peace and tranquility in life, to see order and inspiration
My Ongoing Journey: A Non-Exhaustive List of Lessons Learned
I began to cultivate an attitude of gratitude. Which changed the landscape of my brain. I learned that as I practiced gratitude on a daily basis. The regions of the brain associated with reward and emotional regulation are boosted. Over time the neural pathways I was creating, in gratitude practice were making it easier to focus on positive experiences. Serotonin and dopamine production was boosted. Helping counteract stress and anxiety. Gratitude is described as a natural anti depressant. Helping improve your mental health.
I found my greatest supporters. From a small girl with pigtail braids to the woman I am today. My mom has been a cheerleader. And a friend. One to look at my work and smile in encouragement and love. I feel safe to create because this was her response.
I learned over time that being a kind person didn’t mean I should allow others to walk all over me. I learned a kind person can still:
have regrets for the way they have done things in the past- do what they can to make up for mistakes and then move forward with hope, brightly and unapologetically
be in a bad mood and not hide it- I try to be honest and up front especially with family and close friends, I understand now that emotions are linked to a message for me, such as:
guilt is telling me I have stepped outside my moral values
shame is telling me I am the problem, not that I have a problem
joy is telling me this is wonderful, keep it up
overwhelmed is telling me to step back and take a breath, there is too much going on
sadness says I lost something
loneliness says I feel rejected or cast out
fear says pay attention, there is a threat
gratefulness says I have what I need
anger says I feel wronged
when I recognize and respond to these emotions, the effects contribute to healing, when I ignore them, they expand and fill to the corners of my mind, hindering a growth mindset
be selective about who they spend their time with- some people drain energy, one can only give so much before reserves are drained
“Not everyone is gonna think I’m funny and pretty and that’s ok, they’re wrong though.”
stick up for themselves- including sharing their thoughts with the right people in the right setting to advocate for self, this can be done gently
set boundaries- setting and changing boundaries is exhausting but it is worth it to make sure the minutes of your day and the units of your energy go to the best outlet
“I’m training my boundaries to be stronger than my empathy, I’m tired.”
say no!- saying no will often be in your best interest, be prepared for those that ask more than you can give by having the words prepared ahead of time, ‘I am not in a position to help with that” Here are some ways your body says no, hopefully you are listening
clenching your jaw
hunching, making yourself look small
fingers curling in to make fists
heart rate increase
constantly feeling fatigue
tight body and breath
knot in the stomach
lump in the throat
feeling frozen, incapable of moving
hard time sharing what is happening
irritability is a first sign that your nervous system is dysregulated (eat something with protein or fat to stabilize your blood sugar, then take a brisk walk to move back into a regulated state)
make mistakes or say the wrong thing- you are allowed to be human, don’t hold it against yourself, just admit the mistake, correct any wrongs and move forward
regret choices they have made in the past- “to be old and wise you must first be young and stupid.”
I am still learning to prioritize myself. And not to feel guilty when I need rest. To block out the world and think about what my body needs to feel better right now. Often I need to step away from something I enjoy. And then I can rejoin when I am ready. Instead of pushing past the point of exhaustion and paying for it for days. Always training my brain to see the positives.
Love and Laughter: The Prescription with an Expiration Date
Health does not always come from medicine. Most of the time it comes from peace of mind, peace in the heart, peace in the soul. It comes from laughter and love.
I would add to that, these aids will not cure a chronic illness but they will heal parts of you. And this will affect the way you interpret pain. The goal is to turn down the dial on the pain.
Pain can be agonizing and constant. In such cases peace is a distant dream. Out of reach. Perhaps for a time. Hold fast. And do not let go.
To those in the thick of pain, I see you. Here is your shout out. To those who are battling unseen and misunderstood illnesses, you are not alone. I see your efforts. To ride that thinnest of all lines. Between wanting to engage in life and overdoing it. I propose there is no way to do this perfectly. But there is a way that will work perfectly for you. You should go do that. Do all the things that are best for you! And remember:
You can only come to the morning through the shadows.
J.R.R. Tolkien
Nature’s Path to Problem-Solving
solvitur ambulando (latin)
“it is solved by walking”
One of my greatest joys this summer has been walking in the forests. Doing so has brought a peace to my life and my nerves that I didn’t know how much I needed. Forest walks are available by going to my How To Get in Touch page. Let me know your availability and I will put something together.
In summary, your best is 100%.. You have something to offer. Silent powers are working for your good. You are amazing. I am not unique but I think I have something to offer. We all have needs. Until they are met, we can get stuck. Keep learning and taking in information. You are not forgotten. With chronic illness and pain. It often seems we live in a different world. But we have the ability to rise from survival to stellify. Directly as a result of what we have survived. And how it has authored our brilliance.
May your daily multivitamin, your pelvic floor, your intuition and your self-appreciation be strong.
Might I suggest that we go outside and chase down a bit of joy?
@wonderled.life
The company on my last walk was as outstanding as the wildflowers. Thanks for joining me!
WOODNOTE- a natural, musical sound, like birdsong in a forest
In My Hypermobility Era
I will get back to my summer adventures in the forest next week. The last few weeks have been tough. So today I am sharing more about the battle I am facing with my joints. I try not to speak about it in negative terms as a general rule. But today.
Er. Ma. Gersh!
I have started seeing my physiotherapist on a monthly basis. Which is more often than I see some of my kids. And they live with me! I have felt so close to getting on top of the subluxations. For so long!
And yet, the battle continues. When the joint slips farther than it should, it often gets stuck. This has a compounding effect. Because the joint that was injured primarily will no longer function correctly. This results in adjacent muscles having to pick up the slack. They will start to be overused. In EDS patients, especially, this is unfortunate. Because overuse of any body part, can result in more joints experiencing a subluxation.
I’m a Zebra; The Ehlers Danlos Phenomenon
While I have not been officially diagnosed with Ehlers-Danlos Syndrome. My hypermobility condition is very similar and I have many of the same symptoms. According to Dr. Alan Spanos,” If a patient thinks they have EDS, they are usually right.” Diagnosis parameters have changed a few times. Maybe I will have EDS when it changes next.
Pickles are Great; Until You’re in One
The last time I had an adjustment, my physio and I were working from a different angle. Instead of treating all the joints from the bottom, up. Like we have been doing lately. We tried treating what we thought was the primary injury. Caused by pulling a wagon with my 3 year old grandson in it. That bit of a twist, we thought, must be the first and then other joints follow. So we treated my upper back first.
When I left the appointment everything felt good. But over the next two days, I could tell, my body was not settling correctly. I had two trips planned and another appointment did not fit before I had to leave. That means I have been climbing mountains on one trip. And supervising a group of 40-some teenage girls at camp for the other, all with multiple subluxations and resulting pain. This is my life with Hypermobility.
What in the District One of Hunger Games IS THIS?
The diagnosis process for someone with hypermobility or EDS can be terribly frustrating. I would go to my doctor. She would run tests. She sent me to specialists. For years, every test came back normal. This should be a good thing. But when you feel something is wrong and you are being told, “All is well!”, depression and other mental illness creep in. The years of being left untreated and without hope, caused further problems.
Doctors started to talk more about treating my mental conditions and the physical symptoms were ignored. I started to think this was all in my head. If I just ignore it, I should be able to live a normal life. I minimized my pain to appear normal. I didn’t want to be a complainer anymore. I got really good at acting. But the pain remained and was causing more and more problems.
Your brain wasn’t made for this much noise. Grow a garden, touch some dirt.
-@twopawsfarmhouse
The Not-So-Subtle Art of Burnout
Shortly thereafter, I entered the phase of chronic illness burnout. I lost hope of ever finding healing. I didn’t want to go through the appointments and treatments. I was lost in my pain and grief at the life I was losing. And to make matters worse, those who were supposed to help me, didn’t believe me. The chronic pain was relentless and I felt too weak to do anything about it.
I started this stage of my life, with the perspective that chronic pain wouldn’t stop me. I wanted to work and play and live. I’d seen multiple stories of people who lost limbs or faced cancer. Against all odds, they went on to run marathons or achieve higher levels of scholastic learning. And yet, here I was with my wobbly joints and I couldn’t run to the living room. I had to adjust my expectations. And my life. To fit what was happening. Not what I hoped would happen.
When you experience continual physical symptoms that impact your ability to function in life. Your mental health is going to be affected, at times. The mentality of, ‘don’t let your chronic pain get to you’ is dangerous. I am learning instead to accept what is and make a game plan from there. Do not shame and blame yourself for having something you cannot control.
Decoding the Language of Symptoms
Craniocervical instability is a constant for me this month. Heralding a near perpetual headache that feels like my head is too heavy for my neck to hold. At other times, it is more of a pressure headache. Caused by an impairment of CFS flow. When I yawn or sneeze I think my head will detach. Other people who suffer in the same way can have brain stem compression. Symptoms include: tachycardia, heat intolerance, fainting, extreme thirst and chronic fatigue.
I often experience pain in the joints where the ribs meet the breastbone. Known as costochondritis. Inflammation builds there when the joints of the vertebrae meeting the spine have a subluxation. This feels like tightness in my chest. When I sit upright, the pain is excruciating. And certain movements can jar that vertebrae and cause pain, making it harder to act normal. I can’t sleep on my side. And my running has been put on hold. I have to walk instead😠 .
I have ongoing disc problems. Discs are supposed to help cushion and support the spine. In EDSers these discs are more rigid than usual. When these discs are damaged, pain will radiate down the legs and into the arms. In the past I have suffered from leaking or ruptured discs leading to pinched nerves. At this stage I am grateful to have built up enough muscles to protect those damaged spots.
There are 360 joints in the human body. How many do you have out today? I can count over 20 spots. Dislocations must be terribly painful. I have never experienced one. But I know subluxations. And they are agonizing.
Eye-Opening Symptoms You Can’t Ignore!
Pain makes sleep hard to smoke out. Add to that the fact, as an EDS or hypermobile patient you also make extra adrenaline. Bully for you! This overstimulating effect makes sleep even more arduous. The body continues to make extra adrenaline overnight leaving a body unrefreshed after a shallow sleep. This added endowment of adrenaline also brings with it, anxiety, abnormal nervousness and panic attacks.
After all this, it can be hard not to feel bitter when you see others out and accomplishing. Especially when it is something you would have liked to accomplish, but now you are not able.
And more especially when people say, you can do it anyway! No. I can’t.
I used to play the piano. I enjoyed practicing big, loud songs that used all my fingers and arm strength. I could make the floors of the house shake. I no longer play at all. Any use of my fingers results in pain in my hands, then arms, then shoulders, then back. I have not been able to get on top of this pain. It breaks my heart when I hear someone play the songs I used to play.
The lonliest moment in someone’s life is when they are watching their whole world fall apart, and all they can do is stare blankly.
-F Scott Fitzgerald
Writing is painful and often illegible due to loose finger and hand joints. After years of pain, my hands tremble and shake.
Here is where I make my justification for my crooked teeth. Dental and oral issues are common in EDSers. Teeth are prone to fracture from minor traumas. Gum fragility has led to bleeding gums. In recent years I have struggled with the joint of the jaw. Chewing too much or taking too big of a bite has led to subluxations. EDS also affects speech and swallowing muscles.
The brain fog is so real, I can’t even. I will forget things, feel confusion, have trouble processing information. There are times when it is worse. But there are no times when it is better. I feel like an inside out version of myself. I can still remember who I was, but I can’t seem to bring her back.
Heed the Symptoms or Suffer the Consequences
A crucial reminder here that doing your best does not mean pushing past all your limits. Ignoring your body’s signals. And using every minute of every day to be productive. Doing your best is what you can do within the boundaries of what your body needs from you. Listening to its signals. Without harming your mental and physical health. Not what you can accomplish when you disregard it.
Most days, I pattern my life around my symptoms. I often experience debilitating fatigue. Especially when I forget the pattern. It takes days, not hours, to catch up. I want to approach each day mindful of the energy I have and where I will need it most. I also have to walk the tight rope of sleep and exercise. Laying down and using functional movement. Too much or too little of these will throw me into a surging mudslide. That I do not see coming. And once it starts, there is no option but to ride it out.
I hoped to age like fine wine but it appears that with EDS I will relate more to an aged avocado.
Muscle spasms that make me twitch and pop are a common symptom these days. Probably due to overuse of muscles all day long. I lie down and it can look like I have popcorn popping in my torso.
I finally found my rhythm when I realized even the steps backward were part of the dance.
-unknown
All This is a Fine How-Do-You-Do; Now What?
With all this going on. I am here to tell you today and everyday, there is beauty in this life. Life is worth living. For the joy, and the pain. When you believe this and start to treat yourself as a whole. Your life will be forever changed. Mine was.
I don't ever crave extraordinary moments anymore. Just small, gentle hums of beauty streaming from below, above and beyond simply from paying attention. Sound. Light. Shadow. Art. Warmth. The night. The morning. Dreams that are not far away but exist right here- Already in my days, hands, and heart. -Victoria Erikson, Rhythms and Roads
Holistic Patient Care Approach
Holistic health focuses on mind, body and spirit as one unit. Recognizing the cycles. Honouring womanhood. Instead of silencing symptoms, we seek to understand the root cause. And then offer natural, supportive remedies. Like herbs, nutrition, energy work, and somatic practices. Empowering women to trust their intuition, tune into the body, and reclaim health in a way that’s aligned and sustainable. It is a collaboration with the body’s natural intelligence.
Oubaitori
The idea that people, like flowers, bloom in their own time and in their own way
Have you heard of the blue mind theory? “It is the science that shows that being in, near or on the water allows you to fall into a meditative state. Increasing happiness. Lowering cortisol levels. And promoting inner peace for your overall well-being.” teaandtranquil.com
Seemingly Trivial Exercises; Substantial Results
Mindfully Natural Ways to Cope
Mindful listening- try to discern what the birds are saying
Mindful awareness- balance stones on one another
Mindful observation- forage local plants
Mindful immersion- forest art
Mindful appreciation- go on a wonder filled walk
Mindful service- tend to your garden of kindness
Healing Meditations
Visualization- forming a mental image, guided or self
Walking- find a gentle, flowing pace
Mindfulness- focusing on awareness
Mantra- repeating positive words of affirmation
Sound healing- uses vibrations
Progressive relaxation- scanning the body to reduce tension
Focused breathing- focusing on the breath to ease stress
Steps To An Empathy Walk
Find an example of a struggle in nature
Find something that brings up feelings of gratitude in you
Find an example of unity in diversity
Find an example of support and kindness in nature
Find an example of something that is healing for you
Share all this with someone who cares
Following are three questions that you can ask yourself every morning to design your day according to your current needs. Reminding you to start with intention instead of output.
How do I want to feel today?
What is one thing that would help me feel content at the end of the day?
What can I release from my to-do list?
I find it more pleasant to start the day with clarity and softness. Making it more likely to move through the day as my highest self.
I love my natural remedies. Foremost among them being forest therapy. For well being. For healing. For finding yourself. There are so many ways and reasons to forest bathe. Join me on a forest walk by contacting me on my How To Get in Touch page.
In failure, may we find dignity. In loss, may we find wisdom. In pain may we find growth. May our souls rise. Ever rise.
I am wedded to wooded wanderlust; a true soulmate in the rough.
-Angie Weilland- Crosby
The Best Supporters and the Worst Naysayers
I love my support people. They are the ones who love me, have been with me along the way. And try to understand my world of chronic pain. They mean the world to me and some days they are the thing that keeps me going. This post is not directed at those loving and supportive people. But if they read this, they will get ideas of how to play defense for us chronic comrades in social situations.
You ask what I’ve been doing all this time; as if surviving wasn’t much of an effort.
-Ginnie Bale
I experienced a less-than-supportive exchange recently. I have discussed it with friends who are chronic comrades. They have experienced multiple similar conversations. Let’s talk about what my role is in someone else’s healing? How do I support? And how does it relate to honey bees? Find out more in this post.
First Things First
Join me on Facebook, Instagram and X. For quotes, reasons to forest bathe, updates and the odd pic of my super cute grandkids. If you know anyone that needs this information to be a better support person. Or, if you know a chronic comrade who needs to read this to know they are not alone. Please share.
When Helping Hurts: The Irony of Good Intentions
As humans we love to be fixers. We hear of a problem and we want to get to work solving things. Whatever we can do to relieve the suffering of another. But what if in our best efforts we are creating more pain? How do we support without making it worse?
Saying nothing sometimes says the most.
-Emily Dickinson
I have a dear friend who just had shoulder surgery. She struggles to get up from a seated position. I saw someone trying to help her stand. But in their best effort, they were pulling on her bad shoulder. She didn’t have the words to say, Stop! in her pain. As they yanked on her, she cried out. It made me think, how often in my best efforts am I creating more strain on my chronic comrades? Thinking I am supporting when really I am doing more damage than good.
Unlicensed and Unqualified: Keep Your Remedies to Yourself
One of the more painful things I have encountered since developing this condition. Is being told what I should do to fix it. As though I haven’t been trying for all these years. It brings up so many emotions for me.
When simple solutions are proposed, I feel they are questioning my motivation to get better. When they go on and on about supplements I’ve tried. Or therapies I know don’t work for me, I feel misunderstood. And alone.
When they ask where I’ve been and why I’m ghosting them. I don’t have the words to explain what being stuck in a flare means.
When they say I hope you feel better soon… 🤦🏼♀️
In Sorrow: Silence Speaks Louder Than Advice
One must earn the right to give advice to a chronic comrade. Do not offer unsolicited advice. A close support person that has been with us through the years has earned that right. A new acquaintance has not.
While we chronic comrades appreciate the effort. Whatever you think we should try, we have tried or it is not an option. You are not greater than my condition. You will not have the ability to swoop in and solve it. After years of me trying to do so.
As hard as it is for the average human to understand, sometimes there is no answer. We chronic comrades go through a grieving process to get to this place of acceptance. Do not interrupt that process!
My chronic comrades, how do you handle someone that is trying to help and doing more harm?
Try this idea on for size. What if we tried to see that everyone is here to teach us a lesson? What can I learn from this person’s response to hearing about my condition? is a good question. Is there a way to avoid this person in the future? is also a good question.🤷🏼♀️
Some cause happiness wherever they go; some whenever they go.
-Oscar Wilde
Sick of Oversharing: Trying My Best
Excited to announce I have just about had it. I feel like my body has had a check engine light on for months and I just kept driving it. ‘It’ll be fine.’ And now all the dashboard lights are on and some of them have started flashing. Sometimes life just sucks the jelly right out of your donut.
When life is going smoothly I can take terrible advice from someone, scoff, and carry on with my life. When life is opposing my every effort, it is much more difficult to have patience. This often happens in chronic conditions. It is a challenge to be patient with those who don’t understand.
This statement rings so true for me. And I hope all my chronic comrades can take this in. Say it with me: My Chronic Illness Is Not My Fault. Now say it again and mean it.
Chronic comrades do not need sympathy or pity. We don’t have time or energy for that. But when my condition and its associated symptoms are treated like moral failings. It drains what life energy we had left. So much of my energy goes to existing, I am stretched. I have a low tolerance for everything.
Here’s an odd question for my chronic comrades. When you meet someone new, how long do you wait to share about your condition? It’s like dating someone new and waiting to tell them you have kids. It’s gonna come up.
I have tried not to share about my condition. I have tried sharing just a snippet. But when someone asks what I do for a living, and I say, “My best, I just keep doing my best.” And they stare blankly at me waiting for the real answer. I eventually say somethings along the lines of, “I have chronic pain and I can’t work right now.” The conversation seems to shift.
My condition permeates my life. It has weaved it’s way throughout and there are not many topics that don’t touch on it. But in giving this much information people seem to think it is now their job to diagnose and cure me. They become Dr Quinn Medicine Woman. And inquire about medical history, medications, past surgeries and the like. They have all the solutions. Often their solution is that I just need some motivation. There is this surgery someone had. Have you tried yoga?
I look deep in their eyes and determine, I’m starting to think we aren’t in this together.
Newsflash
a person’s medical information is not up for your perusal. Do not ask invasive questions and Quit trying to fix them.
Bees Be Like My Chronic Comrades; Let Me Count The Ways
Let’s talk bees. Below, are some bee facts and how they relate to those with chronic conditions.
There are more than 20 000 species of bees including bumblebees and honeybees. There are so many chronic conditions out there we can’t possibly have the answer to every one. Doctors are still working on how to treat them. Let’s allow the doctors and patients to figure that out.
Male bees are called drones. Their only purpose is to mate with the queen bee. We all have a role to play. Those with chronic conditions will have to reassess the role they have assigned themselves at times. Checking in to make sure you are not playing the roles for others around you is key.
Bees live in colonies. Those with chronic conditions rely on their support people. Do not force yourself into a role inside their colony without their approval. It’s like trying to change someone’s pants for them when they already dressed themselves that morning. Soooo awkward!😳
Bees have different odor receptors to help them distinguish different flowers. Generally speaking, those with chronic conditions are able to distinguish the pain and frustration of a chronic comrade. Better than someone who has not experienced it. Do not be offended if your loved one with a chronic illness needs the support of other “bees”.
A Queen Bee can lay up to 2500 eggs a day. You don’t see the queen. Anyone that is able to watch her will think she is just sitting around. But under the surface, great effort is occurring. This is her role and she fills is elegantly. My chronic comrades have been known to lay low. Sometimes that is our role. And I see my chronic comrades as elegant in the laying low and the emerging when it is time.
Here’s another suggestion for my chronic comrades in these awkward conversations, a wise man once said,
Bees don’t waste their time explaining to flies that honey tastes better than 💩.
-Willbur Glenn Colaco
Uplifting Allies: A Glimpse into Positive Support
This is what positive support looks like for me 👇🏼. How about you? Drop an image or remarks in the comments.
If I fall and you don’t know how to safely get me off the floor. Don’t yank and pull until I am crying out in pain, lie down with me until the ambulance arrives.
These are just ideas. These make my nervous system calm to know that someone else has felt what I am feeling. If you can find ways to relate to me, I feel less alone. I feel that when I think of my chronic comrades. I know I have chronic sisters who spend a lot of their time working on their eluxorama. I am inspired by them!
Eluxorama
The devotion to positive spiritual growth in the midst of underlying chaos or darkness
Some days I enjoy time spent developing my eluxorama. Other days I say, ‘it is what it is’, then I turn around and vomit due to anxiety. Having a support person can take me from yelling, “Silence you uneducated peanut!” at those who don’t understand, to :
"Let me keep my distance always, from those who think they have the answers.
Let me keep company always with those who say "Look" and laugh in astonishment And bow their heads."
-Mary Oliver
Nature’s Finest Wonders
Get out and enjoy some forest therapy. There is so much beauty around us.
In nature nothing is perfect and everything is perfect.
-Alice Walker
Here’s some life lessons from our honey bee friend:
Thanks for joining me. Whether you are a sufferer or a supporter or someone that wants to understand. Here’s the highlights. Make sure your helping is helpful and not harmful. Unless you specialize in my condition, or are a support person that has earned the right to an opinion. Kindly keep your remedies to yourself. Even if you have the best of intentions. Thank you, but no thank you. My condition is not my fault and yes, I have tried that. Do you see yourself in my bee analysezzzzz? I’ve shared what positive support looks like for me. Drop a comment for what brings your nervous system to calm. Develop your eluxorama and enjoy nature’s wonders. Take some lessons from our bee friends. Take care, my friends.
"Some days she's a warrior. Some days she's a broken mess. Most days she's a bit of both. But everyday she's there Standing. Fighting. Trying." -Anonymous
…as I wandered the forest, the green leaves among, i heard a wildflower singing a song…
Fjellro (Norwegian)- means “mountain peace” or “a quiet place in the mountain”.
I could use some mountain peace. My diagnosis of Myalgic Encephalomyelitis- Chronic Fatigue Syndrome (ME-CFS) demands that I find time and places for peace. Outdoors- if at all possible. The winter months make it less than practical in Saskatchewan. But the forests and spaces of nature are melting and inviting us to join their tip toe into spring. I will explore this diagnosis and why nature is so beneficial in today’s post.
I slipped on the ice again yesterday. Just a mini whoopsy daisy that would be nothing for the average Joe. But I am me. And it is not nothing.
This has been an atrocious year for ice. This is my third fall. Every time I fall I have to put in a herculean effort to get back to where I was physically. Which also takes a toll mentally and emotionally.
It means more painful days. And harder to sleep nights. It takes weeks (sometimes months), a few physio appointments to figure out what is happening and then I fall again!
Frustration at the setback is not a strong enough word. Exasperation. Fury at myself over such a mistake. Rage at the prospect of what this means for the days, weeks and months ahead.
Faith is a bluebird we see from afar. It’s real and sure as the first evening star. You can’t touch it, or buy it, or wrap it up tight, but it’s there just the same- making things turn out right.
-The Rescuers
My ME-CFS Diagnosis: The Mystery Illness That Would Have Ruined My Social Life If I’d Had One
Such an accurate depiction. Just getting dressed feels out of reach. Taking care of kids is a stretch but worth it. Although that knocks out fitness and and career (you can’t have it all!) Plans, hopes and dreams feel too far away to try to reach.
In my last post on Myalgic Encephalomyelitis (ME) Chronic Fatigue Syndrome (CFS) Living with ME/CFS: A Journey Through Chronic Fatigue I explained that when broken down the term means, inflammation of the brain and spinal cord with muscle pain. After years of wondering and then months of testing, I was told the master plan was to manage the symptoms and treat the pain. Forever.
Rubatosis is a newly coined term by John Koenig. He defines it in his book “The Dictionary of Obscure Sorrows”. It speaks to me because it is derived from the musical term rubato. I played piano for years. I loved songs with rubato. Rubato literally means ‘robbed time’.
When playing a piece of music that calls for rubato, the musician subtly speeds up and slows down. This ‘robs time’ from one spot and gives it to another. This inclines the ear of the listener as it is not what is expected.
Rubatosis is being aware of your own unsettled heartbeat. Sensing a nervous, irregular rhythm. Unlike the steady beat of a metronome, it feels erratic and frantic. This is one of the sensations I feel with ME. Along with that feeling of sorrow as originally intended. I sense a physically unsettled feeling that never shows up on any test. Doctors and their machines cannot find it. But the sensation persists.
From There To Here: Now What?
How does one keep fighting against such odds and thrive, not just survive this life? I believe this is where SISU can come in. I discuss sisu in another post if you want to learn more. Sisu: The Art of Thriving in Adversity.
Sisu is where perseverance and grit end. It is the second wind we find to go on. When you feel you have reached your limits, can you find your sisu? Can you meet yourself in this place of suffering and give yourself the time to grieve? And then push past your perceived limits. Those places that other people don’t have to go. Feel the frustration. And then advance. Arise. Flourish. Shine.
Also know when it is time to stop shining and go to bed. 😉
I recommend doing all you can to make your physical environment peaceful and comfortable.
Guilt-Free Zone: Moving Past Disability Guilt
Do you feel guilty about your disability? I feel like a burden on others. I see my inabilities and put aside my abilities. Let’s discuss the guilt that comes along with disabilities. Bring it out into the light so there is no shame here. You are not the only one.
I feel guilty when I struggle with an everyday task like walking the garbage to the trash can outside. I feel incompetent. I feel like a whiner. I feel powerless. So I do it anyway. And I slip on the frozen lake that is our driveway.
I feel guilty when I need to ask for help. I would rather just take care of things myself. But I have seen the repercussions in the past. It is an ongoing internal battle of pros and cons for the most menial of tasks.
I feel guilty for needing accommodations. My back starts to spasm when I think of sitting on an upright chair for any length of time. If I can’t recline, all the joints that are “out” have to work too hard. Little, tiny muscles are asked to do too much. And then they start to complain loudly. With inflammation and pain. But to bring a recliner camp chair with me wherever I go is demeaning. Even the super old people are fine in upright chairs. What’s the matter with me?
I feel guilty for needing more rest than others. It is a need I cannot ignore. I can pretend to be a “normal person” for one day. Maybe two. But then I will pay dearly for time that should have been spent resting &/or sleeping.
I feel guilty for quitting my job. I see others fighting through exhaustion and pain. Continuing to work. There are so many days I just want to ignore my body and join the rest of the world. Even typing that sentence makes my body react adversely.
And I feel guilty for not showing up. I want to be there. I want to do more. I want to see you. But my condition is not meant for this world. I have to create my own if I want to thrive.
The Vast Spectrum of Struggles: Understanding This Essentially Invisible Condition
What’s stressful about having an ‘invisible illness’ is that others expect you to have the same energy levels and stamina as people who are healthy, because you ‘look healthy’, which usually means you push your body past where you should in order to not appear ‘weak’ or ‘needy’.
-Hannah Lindgren
The symptoms and severity of this condition vary widely person to person. Some are home bound. Others even bed bound. I was there. I know what I, personally, need to do to keep myself from going back. This is what I can share with you.
It is not a cure all. Every journey with this serious neurological illness will be different. One thing sufferers will see in common is an exacerbation of symptoms with physical and mental exertion. Resting is ineffective at alleviating the symptoms. Waking exhausted is the daily norm.
ME-CFS is characterized by a profound dysfunction of the regulatory control network within and between the nervous system.
This interacts with immune and endocrine systems affecting virtually all body systems cellular metabolism and ion transport.
Rosalynde Lemarchand
A Nod to Jeff Foxworthy and a List of My Own: Both of Which Are Not to be Taken Too Seriously
Instead of Jeff Foxworthy’s famous, You Might be a Redneck, let’s play You Might Have ME-CFS. Disclaimer: I am not a doctor or medical professional. This is not intended to diagnose, it is for entertainment and introductory informative purposes only. If you have any questions, talk to your doctor. Also despite the fact that I said let’s play, this will not be fun.
You Might Have ME-CFS-
If you experience severe and debilitating exhaustion on a daily basis. if you have ever been too tired to answer a simple question, to turn your head to look at someone, to get to your bed and so you lay down wherever you are, you might have ME-CFS
If you have sensitivities to noise, lights, sounds, foods, odors and chemicals, if your guts are grinding and your brain is buzzing, your limbs are cramping, your eyes are tingling and your muscles are spasming and your extremities are numb, you might have ME-CFS
If your body overreacts to temperature changes, if the cold makes you convulse and the heat makes you nauseous and you get stuck feeling one or the other, then back and forth with no sense of order or balance, if your skin feels like a million pin pricks with each change in temperature, you might have ME-CFS
If you experience daily unexplained pain in your muscles and joints, if you have muscle weakness and reoccurring headaches, if you wonder what you will do when you are 80 since your body feels like it has aged 10 years in the last year, you might have ME-CFS
If you have brain fog to the point that it is often embarrassing and off-putting in a conversation, if you constantly struggle for the right word, forget the names of your friends, and lose track of what you were going to say every, single, time, you might have ME-CFS
If you struggle through exhaustion all day and then equally struggle to get to sleep and stay asleep all night, if you have night sweats and chills, if you have extra pajamas by your bed, just in case you sweat through the first round, you might have ME-CFS
If you struggle with lymphatic fluid blocks and swollen or tender lymph nodes, if you know the spots to massage and what to leave alone, if you struggle with nasal passages staying clear and swollen glands, you might have ME-CFS
Pretend You Have ME-CFS: The Hilariously Not Funny Guide
The symptoms are one thing, how they dismantle our lives is another. I have a different list in my other post on ME. Here is a new list of how to duplicate the feeling of having ME for anyone that wants to know. Like a partner trying on a pregnancy suit to find empathy for their expectant wife. Here we go. How to replicate the symptoms of ME-CFS:
drink a bottle of wine and all the espressos you can hold (I don’t drink either but you get the point, something to make you sleepy and something to keep you up for 3 days straight)
dump a load of rocks onto your bed and lie down
have someone lay multiple weighted blankets on you
invite someone with the flu virus to cough in your face and wait for that to take effect
call on a friend with a toddler to jump all over you, especially directly on your joints
inject your muscles with lactic acid until it feels your limbs will fall through the mattress with dead weight
ensure you have live bare wires placed around you, the shocks you get will be equivalent to the body shocks we are so fond of
have someone dump all the ice cubes they can find on and around you, touching your bare skin until the sensation of pin pricks starts, then have someone prick you with pins, small pins are fine
turn on all the florescent lights and place them directly over your eyes, no blinking!
Lastly, have your niece that is learning violin over to practice directly by your ear
Chronic illness is tricky. People don’t know what to say. When someone has an illness that they beat, they are applauded for their ability to overcome. As they should be! When someone dies, we remember them for their strength to the end. As we should! But in chronic illness, people ask if you are better yet. What will the doctors do? As though you haven’t tried everything. They look for improvement and see none and wonder when you will start trying.
I’m Not Tired, Just in a Long-Term Relationship With my Bed!
Recherche WomenSome women are made
of steel, stones, tears,
dust, bones and scars
Others are made of books, music,
rainfall, stardust, moonlight,
flowers, daydreams
And wild adventures.
The rare ones are made of both.
-Omoehi Ehixojie
Just because the past is painful, doesn’t mean the future will be.
-Meet the Robinsons
Forest Therapy: The Only Time Talking to Trees Isn’t Considered Crazy
I need to be alone for certain periods of time or I violate my own rhythm.
-Lee Krasner
My way through. Forest therapy. I don’t openly share the invitations that I use in my forest therapy practice. They are what I use when I take individuals or groups on walks. There is an added benefit to utilizing silence, meditation and the many practices I have to offer.
Click to my How To Get in Touch page to reach out if you have any questions. If you’d like to know when my walks get scheduled, follow me on social media. Search sunbeam acres on Instagram, Facebook and X.
Tickling All Five Senses for a Brilliant Nature Connection Adventure
Engaging all five senses is tantamount to the forest therapy walk. Enlist your eyes, ears, nose, fingers, and taste buds to join you. Following is an example of how that looks.
Sight- (this one is easy, you can look at a book of nature to get that, but you are missing four other senses when that is all you have) take time in nature to notice what is around you, the colors, the shapes, the relationship between the forest and fauna.
Sound- the birds are singing their songs, we can hear the breeze, what else do you hear, listen for what is near, and then further and further away, then nearer and nearer
Smell- what trees are near, do they have a scent, is there mud or dirt, decaying wood, pinpoint different scents and then how would you describe the overall scent of this space in nature
Touch- a variety of textures are accessible in any space in nature, the bark of the tree and any body of water nearby are what come to mind first, what else is handy, a ladybug to crawl on your hand, a light brush over a patch of grass, toes digging into the sand or dirt, what else
Taste- this one can be tricky, lots of forest therapists bring a thermos of hot water and add bits of the forest to use in a tea ceremony at the completion of the forest therapy walk, make sure you know what you are putting in if you decide to go this route, only use what you are very familiar with, some of the places I go have Saskatoon berries or honeysuckle (just don’t eat their berries) use what you know and learn more about what is safe in your area, you can always bring a snack from home to engage this sense while on your forest bathing walk
It’s Not Woo Woo: It’s Science, Just with a Side of Quirk!
Connecting with the forest through all these and more sense helps me to balance a nervous system. And that is not an easy feat with my life! I promise you it is worth feeling a little quirky at first. For those that think this is alternative medicine linked to the supernatural. Let me assure you, it is no such thing. The science behind the practice is proving the benefits.
If you’d like to look at a couple of those scientific studies:
👉🏼Here is one that shows how woodland sounds help with relaxation more than meditation apps.
👉🏼Another on how the sounds of nature relax our bodies and help them go from fight-or-flight to rest-and-digest mode.
These studies are copied from Forest Bathing Central You can head to their page to find a monster list of the research they’ve compiled on the physical, emotional and mental effects of forest bathing. Forest Bathing Central check them out!
Ralph Waldo Emerson knew where it was at. He was a forest therapist long before it was a term. Check this out, he said:
Few people know how to take a walk. The qualifications are endurance, plain clothes, old shoes, an eye for nature, good humor, vast curiosity, good speech, good silence and nothing too much.
I’d go for a walk with him any day. Take care my friends. Watch out for the icy patch!
I walked a mile with Pleasure She chatted all the way; But left me none the wiser For all she had to say.
I walked a mile with Sorrow And ne’er a word said she; But, oh! The things I learned from her, When Sorrow walked with me.
-Robert Browning Hamilton
Have you found learning in your greatest sorrows? Chronic pain has changed the landscape of my life. Through the sadness and heartache. It has been my own school. A specific training.
Searching for Joy in the Gloomy Neighborhood
As humans, we all experience seasons of grief and depression. There are times in this life that those emotions are the correct and measured response. Chronic everything has led me to more than one season of grief. But I don’t want to live in the neighborhood of depression. It is appropriate and healthy to visit grief and sadness at times. However, I believe that to live in the community of peace and joy will give me the greatest satisfaction.
Today I will explore the relationship between chronic illness and depression. I will share what I have noticed, and what has helped me.
I want to take a moment to send a shoutout to all those that have subscribed to the blog. And a big thank you for all the loving feedback. If you know someone that suffers with chronic illness, chronic pain, &/or chronic fatigue. Take a minute to share either my landing page: sunbeamacres.ca or any specific post. There are so many people that are hurting and have tried it all. They have lost hope. I was there. I don’t want anyone to suffer the way I did for a moment longer than is necessary. Offer them a sunbeam of hope.
Do you know the signs of depression? Would you recognize it in yourself or others?
Disclaimer: I am not a trained counselor or psychologist. This post is meant to be used as suggestions from a friend. A friend who has been there. If you have medical issues, talk to your doctor. If you have mental health concerns, talk to your therapist. If you are looking to break the cycle of unmanaged pain and fatigue, that’s where I can help.
What You Need To Know
Here is a my list of things to watch for in regards to depression. This is not meant to diagnose. Just to raise a red flag for you to talk to your doctor.
Brain fog- this is tricky because brain fog is a side effect of our illness, our medications, our inability to sleep, but if you notice an increase in brain fog, take note (literally, write it down or you will forget)
Messy- there may be a lack of care for appearance and living space, again some people are just messy, this is more mess than usual, and not caring about it
Feeling worse around others- you know the people in your life that lift you up, if you feel dull and dragged down around your tribe, that indicates something is off
Your own thoughts drag you down- have you heard of ANTs (automatic negative thoughts) these are powerful and constant, pay attention to the ANTs, the way you talk to yourself internally
Hobbies are not energizing- we all need creative and physical outlets, those activities that normally bring you joy suddenly seem like a chore
Acting more irritable and trying to drag others down with you when going into a depression spiral
Wanting to be at home, alone, all the time- some of us are home bodies, but having a desire get out and socialize is part of our beings, we get to choose the tribe and the activity, I don’t think we can choose to not need anyone
Constant fatigue- again, tricky with meds and side effects and flares, but for no other reason, you are more fatigued than usual
View of the world is negative- we all have to navigate this world we live in, it can be tricky, but when all we can see is the dark side of everything, something is up
Losing dreams and goals- lack of mental energy to plan ahead, all you can see is a dreary future
Do you see yourself or someone you love in this list? How about in this image? 👇🏼 When we ignore the signs of depression, it will start to manifest in physical symptoms.
The Wacky World of Chronic Illness Factors
Do you have triggers that initiate your depression? It’s good to know your triggers. And yet, in my experience, anything can trigger depression in chronic illness. Cold weather. Holidays. Waking up. Going to bed. Getting together with friends. Not getting together with friends. There are so many layers of emotion.
are u ok? im literally a forest fire and i am the fire and i am the forest and i am the witnesses watching it
@fringeffect
I used to daydream of a time when I would have no more pain. My life would realign with the trajectory I’d planned for it. But waiting and waiting for something that is never coming led me to despair. With each setback I slipped farther and farther.
Maybe you are like me. When all these emotions hit me, I pushed through. Thinking there were no other options. And (no surprise), the next stop for me was burnout.
Burnout is sneaky because you don’t realize you’re borrowing from tomorrow to push through today.
Emily Leahy
Brain Power Showdown: Healthy Minds vs. Chronic Pain
I have seen images of healthy brains and the brain of someone with chronic pain. My limited understanding (also not a neurologist) is that a brain can be damaged over time. In someone with chronic illness. There is constant activity in centers that should normally be at rest. Information starts to be processed differently. This could explain why over time we develop symptoms such as anxiety, depression, sleep disorders, and difficulty making decisions. The toll our brains take on a daily basis when dealing with pain is no joke.
When I am in crisis mode mentally. My brain is not to be trusted. It is overwhelmed and overworked. Our brains are designed to protect us. But left to their own devices, they do a terrible job. We have to manage them. Especially when they are also dealing with chronic illness. But don’t worry. You are still inside there.
Don’t think the garden loses its ecstasy in winter. It’s quiet, but the roots are down there riotous.
-Rumi
Brain Games: Boosting Your Mental Superpowers
I am learning to manage my brain and my emotions when depressive thoughts come up. Part of that work is affirmations. I can find the words to let go of what is not useful or regain balance with what is useful. For example:
Over generalization thought: “I failed at this so I am a failure at everything.” Counteracting affirmation: “A bad day does not equal a bad life”
Minimizing thought: “Sure I’ve done hard things. But other people are better.” Counteracting affirmation: “My chronic illness does not define me. I can still do hard things.”
Apathetic thought: “I will never get better, why do I even try to manage it?” Counteracting affirmation: “I am worthy of healing.” (healing is different than cure)
Catastrophizing thought: “This is awful and it will never get better.” Counteracting affirmation: “There are good days ahead.”
Isolation thought: “I don’t belong with my loved ones anymore.” Counteracting affirmation: “Not all my thoughts are true, depression lies to me.”
Perceived burdensome thought: “I make their lives harder because I am this way.” Counteracting affirmation: “I am not a burden on those around me, I only think I am.”
Comparison thought: “What is wrong with me? Why do I need so much more sleep?” Counteracting affirmation: “Rest is important and my body deserves it.”
Give Your Negative Thoughts a Run for Their Money: Six Questions to Ask
When an affirmation isn’t enough to chase those negative thoughts away. Here are 6 questions to ask yourself:
Is this thought true? Can it be proven in a court of law? e.g. Thought: I am too much for people. True? Not necessarily. Maybe for some people. Or in some situations. It is an opinion. It is not a fact.
Is there evidence to prove it? Thought: I can’t handle the pain. Evidence? It sure feels like it some days. But the evidence would suggest that you have been and will continue to handle the pain.
What is a more helpful thought? Make sure it is a true thought that you offer yourself. e.g. Maybe I am too much for some people now that I have a chronic illness. And maybe that’s okay. Maybe I like being my true self more than catering to the needs of other people.
Is there another way to look at it? Going back to the second example, the thought that I can’t handle the pain. What do I need to survive this flare? Who are my people and what are my supports in place? Start to see the way out.
Am I jumping to negative conclusions? Maybe I was never too much for anyone in the first place. The amount of negative energy we spend on anxiety over something that never has and never will happen, is ginormous.
What would I say to a dear friend in the same situation? I would speak gently and lovingly to a friend in pain. I would not expect more than she was able to give. I would honor her needs. Can we learn to do that for ourselves?
Healing: A Hike, Not a Sprint!
Instead of absorbing all of the thoughts that your brain produces. Try observing as though you were on the outside looking in.
I do not want to give the impression that if you follow this simple list. Poof! Your depression will be gone. The journey out of depression takes time. It takes mending.
Mending is a story on a sleeve. Mending is resiliency. Mending cheers the heart and soothes the mind. Mending is clever, ancient and wise. Mending is hope. And mending is healing.
How are you healing? I find chronic pain is best survived by surrounding myself with people who understand and commend my quiet, everyday courage. The bravery shown by just getting up some mornings. To a body that does not behave. And a life that is more stressful than most.
Something else ancient and wise that soothes a body and soul. FOREST THERAPY!
Connect with Nature Through Forest Therapy!
We often forget that we are nature. Nature is not something separate from us. So when we say that we have lost our connection to nature, we have lost our connection to ourselves.
-Andy Goldsworthy
I feel this in the winter months. I lose a connection to myself. And to the healing that is available through the earth. I miss having time in nature.
The mountains are in my bones. The rivers my veins. The forests are my thoughts, And the stars are my dreams. The ocean is my heart, Its pounding is my pulse. The sounds of the earth write The music of my soul.
-Wild Woman Sisterhood
I love nature. I love its music and rhythms and breath. I love its beauty and majesty. It has been my greatest earthly physician.
Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influence of the earth.
-Henry David Thoreau
Wrapping It All Up with a Bow!
Chronic everything is heavy. Visit the land of grief and sadness but do not get trapped in the neighborhood of depression. Recognize the signs in yourself or your loved ones. We have a lot of triggers. Including a different life than the one we had planned. I did not plan to spend my 40s living like the grandparents in Charlie and the Chocolate Factory. But some days. 🤷🏼♀ h️ere we are. Be aware of burnout. Chronic pain actually changes the way our brains look and work. Do not discount your struggle. Practice managing your brain by countering negative thoughts with positive truths. Challenge sticky negative thoughts with the six questions. Mending and healing happen best around those who understand the struggle. Forest therapy helps!
Watch my social media to stay up to date on my forest therapy schedule. TBD once the trails are clear.
I’ve Got a Question for You: Enriched with a Gaelic Blessing
You get to decide who you will be. I choose to be the girl on the right. I choose to be a success story. For anyone that wants to join me in this. Here’s my advice: Wear your best clothes! Light your best candles. Get excited about your health and wellness goals. Don’t save them for a future version of you. You are worthy of good things. Now! In whatever form that may be. Get going on your best life. It will look a little different than you had planned, but you are trusted to carry this burden. If you look around, you will see people you are teaching as you go through your suffering. It is not without purpose.
To help you find the strength to keep digging, I leave you with this Gaelic blessing:
Deep peace of the running wave to you Deep peace of the flowing air to you Deep peace of the quiet earth to you Deep peace of the shining stars to you Deep peace of the gentle night to you Moon and stars pour their healing light on you... Deep peace to you.
(doesn't that make you want to go into the forest?!?)
Winter sunlight is a warm old soul, spreading love in the bitter cold.
-Angie Weiland- Crosby
Exulansis
Have you ever heard of the emotion, exulansis? It is the tendency to give up trying to talk about an experience. Because people are unable to relate to it.
Can my chronic comrades relate?
I have lived in that space. Until I started this blog. It is a way to talk about my journey. It was lonely to keep it all in. It felt like I was the only one. But I keep hearing of people who are reading the blog and have had similar experiences. We are not alone.
Have you subscribed to the blog yet? Go to the bottom of the page. Hit subscribe. Just fill in your name and email. And you’ll get a weekly email with a link to the newest post. Please share with anyone who would benefit. From the discussion here. Or from a walk in the forest. And watch my social media. (Instagram, Facebook, and X). For upcoming forest therapy walk dates and times as the weather warms up.
Masking the Pain
I try to hide the pain. In social settings I smile and visit and try to be present. When I see photo evidence I recognize I am not as sneaky as I think I am. Why do we do this? Why do we hide chronic pain?
I have some thoughts. But I’d love to hear yours. Comment why you think we hide the pain in chronic illness? Here’s my non- comprehensive list of why I think we hide the pain:
With invisible illness there is a fear of not being heard or taken seriously
Some people choose to be private about what they are going through
When people know, they treat you different
Previous negative experiences when sharing
It is almost impossible to put it all into words and the emotion is close to the surface
Social pressure to be normal- to make others comfortable
Shame and guilt- in all its forms
Avoiding the feeling of being a burden, needing pity or sympathy
Fear of judgment- have you met people? They’re awful!
Denial of the illness and its effects- ‘I can do this on my own’ type of attitude
☝🏼 Can you see yourself in this list? What would you add? ☝🏼
The Health- Privileged
Those privileged enough to know only health do not understand. How could they?These are the ones that will ask if you are better. They are watching only for improvements and progression to a cure. It does not occur to them that your chronic illness does not come with such commodities.
While this can be frustrating. I find it helpful to have a sound bite ready to go for such cases. Instead of staring blankly while your mind searches frantically for where to start. Not everyone needs the whole story. Just a few sentences. ‘My illness is chronic. I have better days and worse days. And for now that is as good as it gets.’
This method is not foolproof. ☹
We can honor our own progress in a way superior to what someone on the outside can provide. From past experience we know how this goes. It might be hard today, easier tomorrow and hard again the next day. I choose to meet myself where I am. Regardless of improvements and progression in the standard way. And that is my route to healing.
The health- privileged will not understand. But as a group of chronic comrades we can provide that understanding for one another. It is said, Health is a crown and only the sick can see it.
Chronic Comrades
I THINK IT'S BRAVE by Lana Rafaela
i think it's brave that you get up in the morning even if your soul is very weary and your bones ache for a rest
i think it's brave that you keep on living even if you don't know how to anymore
i think it's brave that you push away the waves rolling in everyday and you decide to fight
i know there are days when you feel like giving up but i think it's brave that you never do
I am thankful for the few on the outside that want to understand and help. Here are some helpful tips for those of us that live with and love those with chronic illness. Here are some things that seem small but are actually big to those that are suffering:
checking in on us makes us feel loved- even if we can’t hangout, the connection is significant
being heard- having someone hear us and trust our ability to handle it, not take over and offer unsolicited advice
when I say I need to rest and someone rests with me- I don’t need to be motivated, I need to be supported
comfy clothes- they are the only way for my arms to get through a day
going at my pace- whether walking or making a plan, I appreciate being able to move at my own pace
when someone asks how I am and I answer with the standard ‘Fine’ they ask, but how are you really? I feel seen.
meeting people going through something similar- another reason for this blog
You Should Know
It’s important to know that people with chronic illness will have stomach issues, dizziness, nausea, headaches, joint pain, muscle pain, fatigue, and more everyday. These are all essentially invisible. Especially for those who have learned to cope. My grandma knew how to cope. I hope I can emulate her example. Remember you never know who is in pain just by looking.
Coping vs Shutting Down
Is this is the main reason to hide the pain? Is it a coping mechanism? We cannot moan in pain all day long. Learning to listen to your body and ignore the pain is a skill. What are the right coping mechanisms in chronic illness?
Dr Gabor Mate said, When you shut down emotion, you’re also affecting your immune system, your nervous system. So the repression of emotion, which is a survival strategy then becomes a source of physiological illness later on.
Is this also true in a way for shutting down pain centers? What is the difference between coping and shutting down? To me, coping is a way through the pain. Through the darkness to the other side. Shutting down is staying stuck in the discomfort with no plans to get out. This is where I found despair. When we grin and bear it instead of answering the call for what our bodies need, what does it cost? Does it take a bad situation and make it worse?
Maybe you have had a similar experience to mine this week. A new symptom appeared. Instantly, I have so many questions. Is this a symptom I will have as my new baseline? Is it just a flare? How will this affect everything else? Can I handle this?
I’m sick not ugly, thank you very much!
Hiding Below the Surface
We often fill our day until it is overflowing. I believe that this is true especially for women with chronic illness. Then everyone wonders why this Mom is such a mess. At least that’s what happens at my house. 🤷🏼♀️
Like a water balloon that can only handle so much weight before it tears. Ask yourself, what was in that balloon that it could not handle one more drop of water? What is already happening under the surface that is filling your balloon to bursting over an insignificant event? Here are some possibilities:
Emotional dysregulation. We all have emotions. Do you know how to handle the negative ones? If not, they can sit and fester like a wound. Chronic illness comes with its share of negative emotions. Constantly filling our cup up to and over the brim if we don’t learn how to process them. In a healthy way.
Lack of understanding, empathy and compassion. We all crave being understood and cared for. In chronic illness there is an added bonus of feeling misunderstood in the medical world. Finding that understanding somewhere is vital and replenishing.
Mental exhaustion. It is not just physical fatigue we deal with. Trying to figure out what to make for supper when the mental exhaustion has set in is awful. Like trying to thread a chicken through the eye of a needle. Mental exhaustion is not something that can be ignored. It is in your face.
Self deprecating thoughts about how you should be able to do more. No matter what we do as moms and women, we want to do more. Exponentially so in chronic illness. We think we should be able to do what we used to do. We wish we could be ourselves again. We think we should have the ability to push through. Just like the rest of the general population.
I was sick yesterday. Having a minor cold or infection is a big deal in chronic illness. It causes a flare in my other symptoms. My body aches were quite enough before this bug. The fatigue that comes and stays with any upset in the baseline is debilitating. What little time or energy I had is sapped out of me. And recovery is not quick. It is a long and slow process.
Add to the list: anxiety, frustration trying to find the words to communicate, sensory issues, and hormones.
Once overstimulation hits, I know I have already passed the point of no return. Overstimulation is not being able to focus. Everything feels overwhelming. I can’t remember or process anything. Everything is irritating.
From Overstimulation to Emotionally Regulated
Then what? What can you do to move through this situation and come out with minimal effect? How do we cope and not shut down?
Please congratulate me on my new position. It is the fetal position. I will be in it for a while.
-@kristen_arnett
The first step is to remember that you are not selfish if you need to remove yourself from the overstimulating situation. You are allowed to care for yourself. You are allowed to opt out of overwhelming environments. Getting adequate rest is not an indulgence but a necessity. Crying is one way the body regulates itself. Go ahead and cry. It is not weak. Forgive yourself for any reactions. You have limits and that is okay. Learn to listen to them. Honor them.
Unlocking Your Full Potential
You are meant to thrive. Not just survive. My veins are filled with stories of survival. Surviving looks like flight, shutdown, protection, fighting, impulsivity, mistrust, rigidity, critical of others, anxious, anger, defensive, collapsing, freezing, fear, submitting, shame, despair.
While thriving includes regulation, connection, resilience, prosperity, goodness, passion, love, contentment, expansion, well being, ease, play, rest, repair, joy, trust, growth, stillness, presence, and health in all its forms.
Shout out to all those making their life with chronic illness a life of thriving. You don’t let anyone see your darkest moments. Nobody knows the effort. I know how hard it is to transform yourself. Silently battling and winning. Be proud of every little step you are making. Keep going! You’ve got this!
I find it easier to thrive when I am with the right people. They are the ones that help me to feel sunshine when I am around them.
Forest Therapy has been my way of coping. It is healthy and beneficial in so many ways. This is not a hike, this is deliberate invitations that lead to learning and healing. Join me in the forest when the ice has melted. We can get on the trails in and around Saskatoon for some much needed forest therapy. My body does not winter well. I am anxiously awaiting. Spring! Dates and times TBD. Watch my social media to see when and where. If you have any questions reach out to me.
Tell me, when was the last time you ran through a field just to feel the freedom of creating your own wind.
SUNBEAM ACRES 