A wrong note doesn’t ruin the music. A painful day doesn’t ruin a life.
Steven Sharp Nelson from The Piano Guys was a guest on my usual podcast. He talked about a time, when he was young, that he was asked to play at a grand, important event. And he played quite poorly.
When he asked his dad how he had done, his father didn’t criticize him. He said he felt every mistake Steve made. Every bit of despair was written across his face, and his dad was pulled into it with him.
I know that feeling.
On a high-pain day, sometimes the people around me are pulled into it too. They see my face, hear my voice catch, watch me move carefully, and somehow begin carrying a little piece of what I’m carrying. I sense what it’s costing them and feel guilt begin to weigh me down.
Other people don’t know what to do with my pain. So they carry on as though it doesn’t exist. As though it and I along with it, are invisible.
Neither reaction is necessarily wrong. But both can leave their mark.
One makes me feel like my pain is consuming everyone around me. The other can make me feel like I’m invisible.
Steve said that now, when he plays a wrong note, he smiles.
Not because the mistake doesn’t matter. Not because he’s pretending everything is fine. But because he knows what he wants to do with that moment.
I don’t think I need to smile through every painful moment of my life either. I’m not interested in pretending chronic pain isn’t real. Some days hurt.
On those days I get an “error 404 💻: human not found 🚫” message every time I try to move.
But maybe there are moments when I can smile anyway.
Not at the pain.
At what I’m accomplishing and creating in spite of it.
Steve said something else about creativity.
He talked about how music and art have helped people through depression and burnout. But creativity isn’t reserved for musicians, painters, writers, or people who happen to be good at something other people can admire.
We are all creative.
And creativity, he said, works differently when we’re doing it simply for the joy of creating. Not to sell it. Not to post it. Not to have someone judge it.
Just to make something. To play. To imagine. To wander somewhere new.
Steve suggests that when we find ourselves making up storylines and placing blame on others, that we need to add more creativity to our life.
Creativity will make its way out of us one way or another. Either by creating what brings joy or creating storylines where we are the victim. Our brains are excellent screenwriters.
Have you ever been in the act of a menial job that requires no thinking? Cleaning the bathroom? Dishes? Driving on a highway? Do you start to picture these stories playing out in your mind?
This is your brain trying to be creative. Give it a joyful outlet to do so or it will create drama in your life.
I think this is one of the reasons forest therapy has become so important to me.
When I’m walking in the forest, I’m creating. I’m noticing. I’m visualizing. I’m meditating. I’m softening.
I photograph a flower because the colour catches my eye. I make up a story about a crooked tree. I visualize warmth when the wind cuts through me. I listen to the creek and let my attention follow it instead of following the argument happening inside my head.
I’m making little moments of beauty and wonder out of whatever happens to be in front of me.
A patch of purple flowers.
The shape of a tree.
The sound of wind moving through the branches.
A silly thought that makes me laugh.
A place my mind can go when my body is screaming for my attention.
I collect these moments.
I tuck them away like little treasures in my pockets.
A purple flower. A funny moment. A beautiful view. A ridiculous thought. A quiet breath.
Murmuration
The flowing movement of birds flying together across the sky in ever changing patterns. A sight that can feel almost dreamlike, drawing the mind into the present moment as hundreds of wings move with a rhythm that seems guided by something beyond words.
I put them in my pockets. 🐿️ 🌲
Because I know there will be days when I need them. When winter comes (or when pain gets loud 📢) I will have somewhere to go.
Maybe that’s one of the things I’m learning about living with chronic pain. I don’t have to pretend the pain isn’t there. But I also don’t have to give it the entire stage.
I can create something alongside it. I can notice something beautiful. I can wander. I can imagine.
And sometimes, when the wrong note happens, I can even smile.
Not because everything is okay.
But because there is still something inside me creating joy.
And that might be one of the most healing things I can carry home with me in my pockets.
If you’ve ever searched fibromyalgia symptoms, you’ve probably found the usual suspects.
Pain.
Fatigue.
Brain fog.
Poor sleep.
Accurate? 🫡 Absolutely.
Complete? 🤣 Laughable.
Fibromyalgia has a way of inventing symptoms that make you wonder if your body has subscribed to the premium panic package. One day your skin burns. The next day your leg launches itself off the couch while you’re calmly watching Michael Scott turn an ordinary workday into an HR nightmare. Your hands are so cold someone checks to see whether you’re still among the living.
(For the record, I am.)
Before we begin, one important disclaimer.
I also live with hypermobility, ME/CFS, and surgical menopause. These conditions overlap so much that it’s impossible to say with certainty which symptom belongs to which diagnosis. They tend to flare together after poor sleep, stress, overexertion, heat, illness, or simply asking my body to do more than it has available that day.
But every symptom on this list is also commonly reported by people living with fibromyalgia.
Why Fibromyalgia Feels So Strange
Researchers now believe many fibromyalgia symptoms are driven by central sensitization. Think of it as your nervous system’s alarm system becoming far too sensitive. Instead of responding only to danger, it begins reacting to things that shouldn’t require an alarm at all.
A warm shower. Bright lights. A busy grocery store. A long conversation. Even clothing touching your skin.
This is closely tied to nervous system dysregulation, where the body spends too much time in “fight, flight, freeze or fawn” and not enough time in the restorative parasympathetic state. When your nervous system never truly feels safe, it can amplify pain, fatigue, sensory overload, temperature changes, digestive issues, and many of the symptoms below.
Maybe you’ll recognize yourself in a few of them.
Maybe all ten.
1. Burning or Tingling Skin
Sometimes my skin feels sunburned without the sunshine.
Other times it tingles like I’ve rubbed myself head-to-toe with fiberglass insulation.
For me, it’s one of the earliest warning signs.
High pain day.
Busy day.
Poor sleep.
Missed medication.
Too many commitments.
My nervous system begins clearing its throat. And waving tiny red flags. 🚩 🚩
I’ve learned not to argue with it anymore.
2. Random Itchiness
This one is maddening.
I’ll suddenly become fiercely itchy.
No mosquito.
No rash.
No dry skin.
It’s like the itch exists underneath my skin where no amount of scratching can reach it.
If you’ve experienced this, you know exactly what I mean.
If you haven’t, I sincerely hope you never do.
3. Light, Noise and Touch Become Too Much
When my nervous system is already overloaded, everything gets louder.
Bright lights feel brighter.
Background conversations become impossible to filter out.
The tag inside my shirt transforms into a tiny medieval torture device and demands 100% of my attention.
Even a loving hug can sometimes feel overwhelming.
Fibromyalgia isn’t simply pain.
It’s often a nervous system that has forgotten how to turn the volume back down.
4. Balance Problems
I used to do cartwheels.
Now I turn around too quickly in the kitchen and have to wait for the earth to stop rotating.
Heat and fatigue make it worse.
Overdoing things makes it worse.
After spending a day on a boat, getting back onto solid ground requires far more concentration than it should.
My feet and my brain occasionally disagree about where “up” is.
5. Pins and Needles
Hot showers.
Long walks.
Overexertion.
Sometimes they all trigger pins and needles that creep across my body for no obvious reason.
Once they arrive, they rarely leave quickly.
6. Muscle Twitches and Spasms
My leg has launched itself off the bed while watching television.
My neck twitches throughout the day.
Occasionally a finger joins the party.
Apparently my muscles enjoy interpretive dance.
I did not approve the choreography.
7. Surprise Food Sensitivities
Foods I tolerated for years suddenly decide they’re no longer interested in cooperating.
They arrive uninvited.
They unpack.
They stay far longer than anyone asked them to.
It’s one more reminder that chronic illness loves unpredictability.
8. Hands and Feet That Never Warm Up
My hands are frequently freezing.
Years ago, someone grabbed my hand and asked,
“Are you okay?”
Apparently, based on my hand temperature, I should have been dead for several hours.
Comforting.
9. The Fake Flu
Out of nowhere…
Nausea.
Aching muscles.
Complete exhaustion.
Like I’m about to come down with something terrible.
Except…
Nothing ever happens.
It simply ruins an hour.
Or the rest of the day.
10. Heavy, Lead-Like Limbs
Some days lifting my arm feels like lifting concrete. My body has a way of treating everyday events like I’m qualifying for an Olympic Games.
Opening a jar feels ridiculous.
My muscles are technically attached.
Operation has become optional.
Having fibro is like having a phone stuck on 12% battery. And everyone keeps asking me to download another app.
The Ten Things That Actually Help Me Soothe Fibromyalgia
Talk to yourself like you would to someone you love.
Living well with fibromyalgia isn’t about eliminating every symptom.
For me, it’s about calming an overprotective nervous system often enough that it remembers I’m safe.
Respect my limits instead of arguing with them.
Budget my energy so the moments that matter most are worth the flare.
Keep gently moving. A walk instead of a run. The bike instead of the elliptical. Motion is medicine. Punishment isn’t.
Choose warmth—or cooling—depending on what my body is asking for.
Stay hydrated. Water is my most reliable teammate.
Focus on what matters most.
I used to do everything.
The house stayed clean.
I worked.
The kids were fed.
The yard was mowed.
Meals were planned.
Now…
The house is messy.
The yard grows faster than I can keep up.
The microwave has become surprisingly talented at storing forgotten meals.
If one truly important thing needs to happen today…
That’s the thing.
Everything else can wait.
Take breaks before I need them.
Fibromyalgia has taught me that resting isn’t the reward for finishing.
Sometimes resting is the reason I’ll be able to finish tomorrow.
Accept support.
This remains one of my weakest skills.
I am surrounded by extraordinary people.
Help is offered constantly.
Sometimes strength looks like saying,
“Yes… thank you.”
Believe my own body.
Fibromyalgia is invisible.
Sometimes even to me.
I minimize.
I explain it away.
I push through.
But my body keeps telling the truth.
Listening with compassion changes everything. Instead of wondering why my body is betraying me I try to speak the language it is trying to communicate.
Calm my mind.
Sometimes that’s meditation.
Sometimes it’s prayer.
Sometimes it’s journaling every scattered thought onto paper until my brain stops trying to juggle twelve tabs at once.
A calmer mind often becomes a calmer body.
Calarwyth
(n) the moment you stop explaining yourself because silence feels more dignified than being misunderstood again.
A Forest Therapy Practice for Fibromyalgia
One of the greatest gifts the forest has given me is permission to stop performing.
Find a quiet place beneath a tree.
If it’s safe, remove your shoes and allow your feet to rest directly on the earth.
Notice the temperature beneath you.
Feel the texture of the soil, grass, moss, or sand.
Imagine that, for a few minutes, you aren’t simply visiting the forest.
You’re becoming part of it.
The forest simply exists. Allow yourself to do the same.
Allow your breathing to slow.
Notice the sounds above you.
The breeze on your skin.
The scent of pine or damp earth.
If it feels natural, rest one hand on a tree trunk and imagine your busy nervous system borrowing a little of its steadiness.
This practice also includes earthing, sometimes called grounding.
Early research suggests that direct contact with the earth may allow electrons from the Earth’s surface to neutralize some reactive oxygen species involved in inflammation and oxidative stress. Other studies have found improvements in sleep, cortisol rhythms, pain, and wellbeing.
Whether those effects come from electron transfer, nervous system regulation, time outdoors, or all of the above, we do know something with much stronger evidence: spending time in nature lowers stress hormones, supports parasympathetic activity, improves mood, reduces blood pressure, and helps regulate an overstimulated nervous system.
For a body living with central sensitization, those moments of safety matter.
Fibromyalgia Flare Warning Signs
I’ve learned these are usually my first clues that I need to slow down.
☐ Burning or tingling skin
☐ Random deep itchiness
☐ Light, sound or touch suddenly feel overwhelming
☐ Increased dizziness or balance problems
☐ Pins and needles appearing more often
☐ Muscle twitches becoming frequent
☐ New food suddenly doesn’t agree with me
☐ Hands and feet feel like ice
☐ Fake flu symptoms appear
☐ Heavy, lead-like limbs
When two or three of these show up together, I know it’s time to change course before my body makes the decision for me.
Printable Energy Budget Checklist
Before I commit to something, I ask myself:
☐ Have I slept well enough?
☐ Am I already in more pain than usual?
☐ Have I eaten nourishing food today?
☐ Have I been drinking enough water?
☐ Is this worth spending today’s energy on?
☐ Have I scheduled recovery time afterward?
☐ Can someone help me with part of this?
☐ What can I postpone?
☐ Have I taken a break yet today?
☐ What does my body actually need right now?
Sometimes the healthiest decision isn’t doing more.
It’s protecting tomorrow.
Final Thoughts
I used to spend all my energy trying to convince my body to behave like it used to.
Now I spend that energy listening instead.
Oddly enough…
It fights me less.
For those of us living with fibromyalgia, healing often begins in the space between what our body is asking for and what our mind thinks we should be able to do.
I’d love to hear from you.
What is the strangest fibromyalgia symptom you’ve experienced?
Was it something you never expected? Something your doctor never mentioned? Share it in the comments. Chances are someone else has been wondering if they’re the only one.
If you’d like to experience what nervous system regulation feels like instead of simply reading about it, I’d love to have you join me for a guided forest therapy walk. Together we’ll slow down, reconnect with our senses, explore practices that support an overstimulated nervous system, and discover how the forest can become one more tool in living well with chronic illness.
You don’t have to keep pushing through alone.
Rest is not idle, not wasteful. Sometimes rest is the most productive thing you can do for your body and soul.
It feels like we’re all moving through life with our shoulders somewhere around our ears. Chronic illness, fear of aging, financial stress, uncertainty, bad news on an endless loop. Some people are simply trying to get through Tuesday with enough energy to make supper 🙋♀️ .
It doesn’t take much to tip us over.🐄
A few days ago, mine came in the form of a boat launch.
Anyone who’s spent time around a busy boat launch knows it’s a fascinating social experiment.
An overabundance of strong opinions and egos exists.
There are no rules. Written or unwritten.
Just enough ambiguity transpires, that everyone believes they’re right.
I’ve been launching boats for about fifteen years. I know the rhythm. I stay out of people’s way, wait until my truck is actually in the water before moving, and do my best to keep things safe and efficient.
Apparently one gentleman decided I’d “cut the line.”
Boat launches really do produce fascinating specimens of humanity.
I’ve learned that confidence can be surprisingly unsettling to some people. Especially when it arrives in the form of a woman who knows how to load the boat on the trailer without making a production of it.
It’s funny how a little perceived competition can bring out our inner third-grader.
The equipment may have six-figure price tags, but occasionally the conflict resolution skills still come from recess days gone by.
When I calmly explained why I was waiting where I was. And how the process normally works. He didn’t want an explanation.
He began clapping sarcastically.
The world doesn’t just wear us down through tragedy. Sometimes it does it one sarcastic clap at a time.
A man is rowing through thick fog when he notices another boat heading directly toward him.
The other boat is bigger. He should have the right of way.
He shouts. No response.
He waves. Nothing.
The other boat keeps coming.
His frustration turns to anger.
“Move!”
Just before the collision, he swerves.
As the fog clears, he realizes…
The boat is empty. No one was steering.
Instantly, his anger disappears.
Who was he angry with?
No one.
Since first hearing that story, I’ve asked myself this question.
Is the boat empty?
Not literally.
But is this personal?
Or am I assigning intention where there may be none?
Maybe they’re exhausted. Grieving. Terrified.
Maybe they simply don’t know any better.
Or maybe they’re carrying hurts I can’t see.
None of those possibilities excuse poor behaviour.
But they completely change where I direct my emotional energy.
Sometimes, seeing clearly dissolves the anger.
Pronoia
The opposite of paranoia. it is the belief that people or the world are secretly working in your favour. That events, people and circumstaces are somehow conspiring to help you.
That’s different from stuffing feelings down or pretending they don’t exist.
You can’t bypass emotions.
You can’t slap a positive quote over a nervous system that’s sounding the alarm.
But sometimes the alarm quiets on its own because you suddenly realize…
There isn’t actually an enemy here.
Just another imperfect human.
When the boat is empty, compassion often becomes easier than combat.
How will this feel next week?Next month? Next year?
It’s amazing how many mountains quietly shrink into molehills when viewed from a little distance.
Then she takes it even further.
She talks about astronauts experiencing the Overview Effect. Seeing Earth from space and returning with an entirely different understanding of what matters.
Imagine grandmother’s wisdom. Now multiply it by the view from orbit.
Our arguments. Our bruised egos. Our need to be right.
They suddenly become very small compared with this astonishing little blue planet we’re all sharing.
That doesn’t make our feelings unimportant.
It simply gives them context.
Another surprisingly effective tool?
Humour. Humour interrupts the story we’re telling ourselves.
We’ve all done it.
We become convinced we’ve been wronged in the most spectacular fashion imaginable.
Our spouse is over there admiring a duck while we have mentally drafted the closing argument for a trial that nobody else even knows is happening.
Sometimes all it takes is one ridiculous observation from them to break the spell.
I wish I could say I found “the funny” at the boat launch.
I wasn’t there yet.
Maybe next time.
One tool that has helped me far more consistently is asking:
Am I living this moment according to my values?
Not theirs. Mine.
I can’t control sarcasm.
I can’t control mockery.
I can’t control who decides to clap sarcastically at a stranger.
But I can decide whether I respond with kindness.
Integrity. Respect. Compassion.
Those are mine to keep.
The more our daily lives align with our values, the steadier we become.
Peace stops being something we chase and starts becoming somewhere we live.
The idea of felt safety is something we’ll explore more in the next post.
Felt safety isn’t the absence of fear.
It isn’t the absence of challenge.
It’s your nervous system recognizing that you have enough capacity to face what’s in front of you.
That you are enough.
That you can survive this moment.
Forest therapy has become one of the places where I practice exactly that.
The forest rarely requires me to react in the moment.
It stretches time. It expands perspective.
It reminds me that not everything deserves my nervous system’s full emergency response.
When someone steals my peace…
I take it to the woods.
There, I remember that I’m part of something much older than a rude exchange at a boat launch.
Much bigger than today’s frustration.
And much more beautiful than the story my anxious brain was writing five minutes earlier.
Eventually I remember that peace is a terrible thing to hand over to someone you’ve never met.
A Forest Therapy Invitation
If you’re new here and want to learn more about forest therapy and how it works, check out this page. The Gist
The next time something rattles you, resist the urge to replay it over and over.
Instead, head outside.
Find one tree that catches your attention.
Stand with it for five slow breaths.
Now ask yourself:
Is the boat empty?
Will this matter next year?
What would this look like from space?
What response best reflects my values?
How can I become the tenderness this moment needs?
Don’t force an answer.
Just notice what changes.
Sometimes the forest doesn’t solve the problem.
It simply reminds us that we are far bigger than it.
Forest therapy doesn’t help me escape the world. It helps me return to it without becoming like it.
Margaret Cullen ends her book Quiet Strength with words I borrow:
May each of us find a way to bring balance and tenderness to this floating world, moment by moment, drop by drop.
I can’t think of a better response to a world that is hard on beautiful things.
Let’s become one of the beautiful things that refuses to grow hard.
The world may be hard on beautiful things. That doesn’t mean beautiful things have to become hard.
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.
And since all this loveliness cannot be heaven , I know in my heart it is June.
-Abba Gould Woolson
Chronic illness, pain and fatigue are each a full time job. Would you agree? I can sum chronic illness up in three words. It’s. Always. Something.
Today I would like to field such inquiries as the following: What do you do all day? You seem like you are fine, maybe you should start working. Why can’t you work part time? Maybe you should go to school while you are waiting to feel better. Be careful not to take too many medications!
I’m actually only on two at the moment but in the past I have needed more. And with each needed medication comes all the side effects. And by that I don’t just mean the ones on the label. I am of the opinion that those cautions should be followed by, May the odds be ever in your favor.
Diagnosis Denied: The Meds Maze
Chronic illness has no one-size-fits-all medication. It is not like a UTI with basic symptoms. Based on which we can diagnose ourselves. There is not a list of medications to try until we find one that wipes out all the bad stuff.
Alternatively, our goal is to manage symptoms through medication. Not all of the symptoms, mind you. But the ones with which we cannot function while they remain.
Unless you are also dealing with chronic illness you may not realize how frustrating medications can be. Here are some of the medication woes I have come up against:
medications that didn’t work, it would take weeks or months to find this out, starting with a low dose and slowly working up while a multitude of symptoms are ever evolving is relentlessly complex to track
medications that did work but were out of my price range through times that we didn’t have benefits, or often these experimental drugs are not covered anyway, also drug tests that are not covered by the province are out of reach (one in particular that may be useful in determining what I have is $4000)
then there are the fabulous medications that have been the answer to prayer, they finally gave me relief and hope; until they stopped working
when the end result of a medication to manage the pain made me feel worse than the actual pain we were trying to treat
the super fun times when I would react poorly to a medication that looked like it was working (any medication that loosens muscles is now on my DO NOT TAKE list)
there’s the ones that make me gain weight and feel like garbage
and the ones that make other conditions flare
and my least favourite of all, the ones that made me feel like a zombie, they worked but I hated them, the only thing that would touch the pain and I was treated like a drug addict when I would go to refill, but there were also no other options being found, let alone researched 😠
Doctor Who? Solving My Medical Mystery Solo!
Life is hard enough to navigate without chronic illness and its associated roles. Yet sometimes I don’t get to be the patient. I also have to be my own doctor. And patient advocate. And research assistant. Not only are these not paid jobs but they are also crossing the line of a patient-doctor relationship. Which is not appreciated in many doctor’s offices.
On some of my hardest days I have had to play both patient and care provider. I am blessed to have a family doctor at this time who trusts my judgment in my own care. He is happy to fill the supporting role. I wish everyone would be so lucky as to find such a person.
Sleep: My Part-Time Job with Full-Time Exhaustion
Ever since I can remember, I have wanted to go back to bed. While I’m having fun. Whilst visiting with people who energize me. Even after a good night’s sleep.
This is not the same as tired after a long day of living life. This is in response to waking up sick for years and years and years. And it is not tired. It is drained down to my bones. My reserve tank, my extra battery, my other 8 lives. All drained.
In my 20s I would get tired. I would be exhausted. Babies. Working. Home and family care. And then I would push through and accomplish whatever needed to be done. Spring cleaning. Painting a room. Grocery shopping. There was always something left in the tank when I thought I had nothing.
I am learning that a body living on the verge of empty is in survival mode. When I think I have energy to finish a task I am already on the last of the reserve tank. I just don’t know it yet. Chronic illness is about living in survival mode. And that takes constant energy.
Roadblocks and Resilience
My dear chronic comrades, it is okay to do less when you are dealing with more. Chronic illness has put us at a different place in life. And that is okay. I can struggle when I see people around me aiming high and accomplishing so much. But remember, we are not aiming low. We are not accomplishing little. We are aiming in a totally different direction. Which on its own is accomplishing much.
If you see me out and about. Chances are pretty good that I am pushing through. I just want to participate in life. I don’t want to miss it.
Note to self: it’s always a bad pop.
It’s been said that living with EDS is like living the day after a car accident in perpetuity. Some days are just a fender bender. Perhaps I could go to work after a fender bender. But many days I wake up after a head on collision. And even after my fender benders I have to plan ahead for the car accident to come later that day. I never know quite how bad it will be. I live my life on a roller coaster. Not a fun one. I never know when the next down is coming. Still sound fun? Forgot to mention, the roller coaster is on fire.
Joking about it is the only way of opening my mouth without screaming.
-Hawkeye Pierce
Peculiar Symptoms: A Comedy of Errors in Quality of Life
A person’s symptoms can be as varied as a fingerprint. Have you ever felt your hair hurt? Bugs crawling under your skin while simultaneously feeling sunburned? Loathed the need to talk on the phone? These are weird yet documented symptoms of just one of my chronic illnesses. Suffice it to say that pain is pain. And being in pain is about more than just being in pain.
Based on this quality of life scale. For the better part of part of 3 years I was at a 0. I have friends hovering around a 4. I have other friends living at a 8-9 and their body requires a 2. If you think everyone should live at a 10 with enough effort, you are wrong. Be grateful if you are at a 10. Look out for those anywhere else on the scale. This world is not made for us.
The Pain Paradox: Doctors and the Quest for Relief
There is not a good way of measuring pain. A doctor has to cause pain to assess it. Unfortunately for me, my pain would show up the next day after one of these assessment appointments. Long after the time for diagnosis had passed. I didn’t know how to answer the question,
Doctor: What makes your pain worse?
Me: This.
Doctor: You’re just sitting there.
Me: Exactly.
Doctor: Could you elaborate
Me: No, I actually forgot what I just said.
Eleutheromania: an intense and irresistible desire for freedom.
Have you ever wished you could escape your own body? Does it sound like freedom to picture taking off your body like a suit. Living your day. Then you could put the pain suit back on. Perhaps this is why other girls are delicate like flowers. While me and my chronic comrades are delicate like the claw end of a hammer. There is no taking off and putting back on. It is incessant.
A Plot Twist in My Story: Object Lesson
Chronic illness has become a big major focus of my life. I’ve been told if I didn’t focus on it so much, it would be easier to cope.
If you have big rocks and small rocks and sand. If they all have to fit in one container. What goes in first? The big rocks have to go first. If not, the sand and small rocks will take most of the space and the big rocks won’t fit. The sand and small rocks will fit in around the biggest rocks if those big ones are placed first.
The rest of the world has work and family and other big important things like church as their biggest rocks. Then they have other hobbies and interests that fit around those.
Most people cannot fathom having their health as their biggest rock. Their reality does not require it of them. When I put that great big rock in, not much else fits in my container of life. My health has to be my focus. But it can still be a beautiful life. I just have to work extra hard to make it that way.
Some people are under the impression that the longer you are sick, the easier it gets. Don’t you just get used to it? In my experience. No. The longer it has been. The further away the rest of the world can feel. Support people even start to wonder why you aren’t better. Hope is harder to come by. Hope for answers. Hope for the future. The more I try to catch up, the further behind I get.
The Tug-of-War Between Hope and Heartache
I have different needs. I need to rest after small tasks. I need to plan for outings to cost me. My mental health has paid a heavy price over the years and needs extra patience and work. Or dysregulation sneaks up on me. Flares that come out of nowhere need my focus.
Different things drag me down. I am dealing with the grief of losing who I once was. The recovery time it takes for me to do anything extra is hard to take and harder to explain. Believing I should be stronger. Self doubt. Physical, mental, emotional breakdowns. So much guilt. There will be more pain from now until I sleep. All of these and more emotions and feelings I can’t explain.
A disco ball is hundreds of pieces of broken glass put together to make a magical ball of light. You are not broken. You are a disco ball.
Take Two Forest Walks and Call Me in the Morning
I am not a doctor or trained therapist. But I offer you these prescriptions for the following maladies:
For overstimulation- An open sky
For irritability- your hands in the garden
For overthinking- waves on the shore
For disconnection- walk barefoot in the grass
For loneliness- stars in the night sky
For tension- a flowing river
For anxiety- forest air
For mental fatigue- a forest therapy walk
For burnout- listening to a thunderstorm
For lack of focus- the scent of rosemary
For confusion- quiet morning twilight
For inner chaos- sunlight filtering through the trees
For insecurity- the scent of cedar wood
For stress- the scent of lavender
For feeling stuck- hike a mountain trail
For grief- the scent of rose
For isolation- the sound of birdsong
My Daily Circus with My Inner Monkeys
I have often been asked what I do with my time. I know it has been asked with good intentions by my friends and family. They are not accusing me of anything but genuinely want to know what I do. I hesitate to answer because the list seems pitiful in this world of high achievers. But in an effort to link arms with my chronic comrades I share these parts of my day.
I spend time in my spiritual rituals and rhythms. I journal. I work on creative outlets. I spend time outdoors and get my skin in the sun. I do detoxes. I help care for our home as a means of functional movement. I practice EFT tapping and other energy work. I have days that I walk and days that I run. I have to keep moving or I quickly lose muscle. I spend time with friends who bring me up. And my little rays of sunshine (my grandkidlets). So. Many. Appointments. Then there are the high pain days. And the recovering from high pain days. And recovering from every time I go out. It is not the schedule I would choose. But it is one I will keep. I know the alternative.
The smell of moist earth and lilacs hung in the air like wisps of the past and hints of the future.
-Margaret Millar
I hope I have answered some of those questions. I invite you to enjoy your prescriptions. If you know anyone else that needs them, please share this post!
According to the The Mayo Clinic website, fibromyalgia is a disorder characterized by widespread musculoskeletal pain. This pain is accompanied by fatigue, sleep, memory, and mood issues.
Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and nonpainful signals. More women are affected than men. People with fibro may also have tension headaches, TMJ, IBS, anxiety and depression.
Fibromyalgia is like many other disorders. It is on a spectrum and people can develop varying symptoms to varying degrees. These may include (but are not limited to) fatigue, stomach issues, brain fog, restless legs, painful periods, chronic pain, non restorative sleep, headaches and migraines, poor temperature control, swelling in the feet, poor concentration, dry eyes, rashes and itching, bladder problems, trouble staying alert, stiffness, light, sound and heat sensitivity, pain in the jaw, insomnia and IBS. My worst symptom (other than the burning pain under the skin) is twitching and itchy phantom nerve sensations. I feel them most in my nose and cheeks.
These types of symptoms vary from day to day. This variability makes it hard to answer the question, ‘How are you?’.
Less Known Symptoms
Then there’s the symptoms that are not as recognized for being related to fibromyalgia. Dizziness, weight gain, nausea, sensory issues, debilitating coccyx tail bone pain. Sharp or stabbing, burning or tingling sensation. Muscle spasms, aches, cramps, inability to relax. Intense, deep and gnawing bone pain. Feeling spatially disoriented, balance difficulty, staggering gait, dropping things frequently, not quite seeing what you are looking at, and difficulty judging distances. I don’t like driving at night. I find my light sensitivity and difficulty judging distances makes it challenging. It makes me wonder if that’s the reason I would start running into walls as I got tired when I was younger.
And the cold! My body does not like to get cold. It gets into my bones and takes me a long time to warm up. It makes any existing pain worse and the muscles that were already rigid, tighten up a little more. The cold makes skin hurt. Since our thermostats are always off, our bodies think it is 3x colder than what it actually is. Making living in a cold climate a challenge. Although, Saskatchewan seems to be a particularly poor choice on where to live. My chronic comrades will also understand that energy is limited. The cold siphons whatever you have left out of you. All of which can trigger a flare.
Flares
What else causes pain to flare? Everything! Weather changes, emotions, medication changes, severe fatigue, lack of sleep, sunlight, hormone changes, depression, travelling, anxiety, stress, diet, illness, medical tests, overexertion, illness, doctor’s appointments, medical procedures, lack of activity, temperature, injury, etc.
But that all happens on the insides. There are no indicators on the outside.
I Miss Being Me
And then there is the loss of self. Living with fibro often makes me feel extremely useless. I worry about making plans and then needing to cancel them. I worry that any time I do anything it will cause a flare. I can only handle living life a few hours a day. Within that time I need to fit in my exercise and food and therapies. That leaves little other time to achieve anything. It is difficult not to compare my limited life to those who live a normal number of hours per day. I was a mover and doer before. If there was more left to do I would just stay up and get it done. What is wrong with me? is the question on a never ending loop in my mind. Why am I incapable of pushing through?
I run out of energy long before the list is done. Everyday, forever. I fear being left behind, left out and forgotten because I can’t socialize often. It is lonely and it must be hard for others to see me and remember what I am going through. Because it is invisible. My life is not what I had hoped or planned for it to be.
There is so much waiting for us chronic comrades. Waiting to see a doctor. Waiting for a diagnosis. Waiting for meds to work. Once I knew I had fibromyalgia and had done the research I wondered, what I am waiting for now. This is it. This is fibro. I will never be well again. There is no reason left to hope to get well anymore. This is a depressing thought.
Validation for Chronic Comrades
Do you experience any of these symptoms? I believe you. I know that you are not making it up. I am acquainted with your grief. If we were going to make up an illness, wouldn’t we pick something cool? Or, at the very least, pick something that people would believe?
Forest Therapy as a Tool
This all sounds super doom and gloom. But never fear. Forest therapy is here. Forest therapy has been proven to calm overactive nerves. A key indicator in fibromyalgia.
We know the best medicine has always been what nature gives us. Sunlight, sleep, real food, natural movement and exercise, grounding, meditation, laughter and FORESTS! But there’s no time for such things! we say. Until it’s all we are capable of. Then we come back to what has been best for us all along.
So if we have already blown the fuse, here’s what you need to know: The Association of Nature and Forest Therapy Guides and Programs (ANFT) says, “Levels of the stress hormone cortisol decreased in test subjects after a walk in the forest, when compared with a control group of subjects who engaged in walks within a laboratory setting”.
Adds ANFT, “Forest bathing catalyzes increased parasympathetic nervous system activity which prompts rest, conserves energy, and slows down the heart rate while increasing intestinal and gland activity.”
Forest therapy uses immersion in nature through the five senses to help soothe frayed nerves. Frayed nerves are present in fibro. If we can calm them, it will bring our overall stress down. This reduction in stress supports our ability to manage this lifelong illness.
Forest therapy helps restore a sense of mental well-being as well.. It has even been shown to boost our immune systems. This practice can help us recover faster from physical maladies. And manage our chronic illness.
The modern forest therapy movement is rooted in the Shinrin-yoku “forest bathing” practice. This practice was developed in Japan in the 1980s. It has since become a central part of preventative health care and healing in Japanese medicine.
Should we be doing more of the same in western society? I think so!
I am waiting again. But for good things. I have hope in good things to come despite my chronic illness. I know I am developing the tools that will help me not only survive but thrive. I don’t need to compare myself to others. I am building my next self. She is strong and courageous and she knows how to support others.
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If you’re going through hell, keep going. Why would you stop in hell?
My journey started with a bone spur. It wasn’t big but it was sharp enough to shred my superspinatis whose- a- ma- what’s- it and my something or other, every time I moved. So naturally I stopped moving. This isn’t good for any body. But it’s a sentence of doom to one with mobile joints. Part of the problem was that I didn’t know I had mobile joints. The other part was that it took years to find and remove the bone spur. So over those years my mobility was less and less and my muscles that had been holding me together became almost non-existent.
When I say my mobility was less and less, what I mean to say is, I was able to exercise less and less. I was still raising my boys, getting them to school, going to work, getting home to lay down and cry in pain. Then get back up, make supper, drive the boys to their karate or other activities, get home, get them to bed and then go to bed and cry in pain. Driving was the worst. We lived out of town and we had to drive a half hour to anything. The pain crept up into my teeth. Do you know that feeling? So when I’d lay down there was not relief but all the layers of pain I’d ignored all day trying to let go. I suspect I am not the only one who has had this feeling when laying down at night.
I’d try to move slowly for weeks at a time so that the area in pain that refused to be strengthened could scar tissue over. But inevitably I would look the wrong way too quickly or stoop down to get something out of the fridge drawer or sneeze while wiping the counter. And it would suddenly feel cold along the area. I would hope I was imagining it. But the effect was always my shoulder blade feeling like it was falling down my back. Because it was. And I didn’t have the muscle tone to hold it in place the way a typical body should. And the superspinatis and the whatever- it- was were not helping. It didn’t seem to matter how careful I was or how much I ignored it. It was a frustrating and never- ending cycle. Knowing the pain was coming no matter my efforts was hard to handle emotionally.
After years of specialist appointments and physio and ultrasounds and x-rays didn’t show anything I finally convinced someone to order the MRI my physiotherapist was pretty sure I needed. This angel, in the form of a rheumatologist that listened and ordered it even though her specialty had nothing to offer, was the answer to many prayers.
The results of the MRI showed a small bone spur. It was up to me whether to take it out or not. Um, yes please. The surgery recovery was not simple. It took years for all the inflammation to recede to have my normal use and years more for typical person normal use. But I cannot imagine not having gone through those steps and still being in the place where my muscles were shredding until I cried daily. Do you face something that seems insurmountable, yet you know the benefits outweigh the cost? Do it! Make the time for you. Even if it will take time to see results. We invest the time and money in a summer camp for our kids. Shouldn’t we also invest in ourselves?
Back to my story. From there my road to recovery showed the possibility, then confirmed my mobile joints.
No matter how big or small I started an exercise it would tighten a muscle group to the point it pulled out another joint. Like a spiderweb that constantly had someone tugging on it. This particular, pesky spider web tug was pulling my joints out. My body was constantly trying to compensate. It was never happy. I tried all the exercises. I love exercise. It has been so hard to just grin and bear it when someone says I just need to exercise to fix it. Try pilates! Yoga! Gentle stretches! Just push through the pain! Get a massage! Go to chiro! Nobody knows the lengths to which I have gone to solve this.
As a support person, validate pain, validate efforts, never push options. Suggest and let it go. If it is right for your person they will come back to it in their own time. You cannot compare your average body and what it needs to someone with chronic pain. They have to do what is right for them. Trust them. Being pushed too often is likely why they are dealing with this type of pain in the first place. My advice today is to share this information with anyone in your life that needs to know ☝
From mobile joints, to endometriosis, to hysterectomy, to weird nervous system symptoms, to a toxic and wasted body on the brink of major disease, this has been a journey I would not wish on anyone. And yet I know many women are on the same track. Their story is different but the outcome and the need for healing is great. I posted a hothouse (an infrared canopy that warms and soothes nerves) on a Facebook marketplace the other day. I mentioned that it helped with my fibromyalgia and my twitches. The response was vast and immediate.
I only had one hothouse. But. my dear friends, I have something else to offer that has soothed my nerves not only in the moment but its effects are long lasting, such that I didn’t need my hothouse anymore. My temperature is stabilizing. If this sounds anything like your story and you’d like to hear more about Forest Walks and the healing you can find there, head over to my contact page to ask about booking.
SUNBEAM ACRES 