Tag: chronic illness

How to Grow Rich When Chronic Pain is Your Reality

pammunkholm

Ever notice how the word rich instantly makes people picture a yacht, a corner office, or at least a pantry where I have everything I need from chocolate to chia seeds?

Meanwhile, some of us are over here feeling wealthy because we found a position that doesn’t make our back yell at us.

Welcome to redefining abundance.

When you live with chronic issues, the cultural picture of “the good life” can feel like a club you don’t get invited to. My body has very strong opinions. And she will not yield. And yet, many people walking this road discover a strange, stubborn truth.

Richness is not a circumstance.

It’s a way of seeing.

Better Than Happy host Jody Moore distinguishes between two kinds of discomfort. One is fueled by resistance and the belief that life should be different. The other is accompanied by gratitude and a desire to create meaning from what is here.

In the latter, action becomes possible. In the former, people often remain stuck.

For those with chronic pain, discomfort is not optional. The choice lies in how we relate to it.

Turn your wounds into wisdom.

–Oprah Winfrey

Gratitude does not deny suffering. It widens the field of attention so that suffering is not the only occupant.

There is the ache that says,

“Why me? This ruined everything.”

And there is the ache that whispers,

“Given that this is here, what life can I still grow?”

The first freezes us in place.

The second opens a path.

A rich life might include money. It might include health. It might include work you love or a family that grows together. Or it might be something far less Instagrammable and far more sustaining. Presence, meaning, connection, small mercies, deep seeing.

Gratitude has a way of turning what is here into enough, and from that soil, more becomes possible.

Not because your nerves suddenly behave.

But because your mind has room again.

As Meister Eckhart wrote,

If the only prayer you ever say in your entire life is thank you, it will be enough.

Gratitude is not pretending pain is lovely.

It is noticing pain is not the only thing present.

Nature’s Secret Calculus

In the woods, a tree with a twist in its trunk is not considered a failure.

It is considered interesting. Strong. Adapted.

No straight lines required.

Chronic pain can feel like the bend you never asked for. But bends create habitats. They slow us down enough to notice moss, breath, companionship, the sacred ordinariness of being alive.

What if the detour is also the destination?

Chronicles of My Journey

Some days my life feels like a series of unfortunate events. Many of those events are inconsequential to the general population. But to my loose joints they are devastating.

Last August I was enjoying a beach day with friends. Enjoying isn’t a strong enough word. These are the days I live for.

In my rush to support my mom getting off the boat, I slipped. My leg hit twice. On the back of the boat. Then scraped down the ladder.

The pain sent me into waves of nausea. Darkness of passing out kept threatening. I refused to surrender because that seemed embarrassing in the moment.

I was rushed off the beach as my leg swelled into two big lumps. Once I got it raised, it started to stabilize and my senses returned. In the end we decided to wrap it and I got to stay at the beach. But my summer was over.

More devastating was what it did to my gym workouts. I try to get to the gym a few days a week to keep my muscles strong enough to hold me together.

I was finally to a place where I could hold most major joints in for a week or more. This incident set me back months.

The bruise went through the ankle bone and wrapped almost completely around my shin. My tan is hiding most of the damage.

I am pleased to say I am finally back to a place where I can run almost the distance and pace I had before the damage to my leg. But it took all of those 6 months. The rest of my body has yet to catch up.

These setbacks are frequent and challenging. But I am learning there is peace and hope available on all days. No matter what is happening or not happening. And the sunshine will return.

Finding Wealth in the Woods: A Forest Therapy Practice

  • Go somewhere with trees or sky.
  • Let your pace match what your body can honestly do today.
  • Arrive. Feel your feet. Or your walker. Or the place you are sitting. Let the earth hold some of your weight.
  • Notice three forms of wealth already present. Warmth on your face. Air entering lungs. A sound that is gentle.
  • Place a hand on your heart or thigh and ask, “Given my limits, what is still possible for me?” Don’t demand a big answer. Let something small come. A phone call. A rest. A moment of beauty.
  • Say, quietly, thank you.

That’s it. Tiny riches count. And this practice opens doors for more riches to enter your presence.

Navigating the Path Ahead: A Thoughtful Analogy

Imagine inheriting land you didn’t choose. Some of it is rocky. Some days it floods. You can spend years arguing with the map… or you can learn what grows there.

Blueberries love poor soil.

Certain pines only open after fire.

Some of the most resilient beauty requires harsh beginnings.

As Rainer Maria Rilke advised:

Let everything happen to you: beauty and terror. Just keep going. No feeling is final.

Where Forest Therapy Carries Us

At the outset, when life no longer looks like it did, when identity is disrupted, the forest helps us find where we fit now. Not who we were. Not who others are. Who we are today.

In the middle, when the physical and mental anguish feels loud, nature gives our nervous system something steady to lean on. Wind continues. Chickadees continue. Light continues. We borrow their rhythm.

And at the end, or at least with distance, we often see that pain brought unexpected inheritances. Tenderness, clarity, reprioritized love, a fierce ability to notice what matters.

A different kind of fortune.

You may never get the yacht.

But you might receive awe. Intimacy. Meaning.

Moments of real rest inside the storm.

That is wealth no market can crash.

And forest therapy walks with you through the whole thing 🌲

The wound is the place where the Light enters you.

-Rumi

The Influence of Non-Judgmental Awareness: Mending the Nervous System

pammunkholm

There is always in February some one day, at least, when one smells the distant, but surely coming, summer.

-Gertrude Jekyll

If you’ve ever tried to “think positive” while your body is screaming, you already know who wins.

Pain wins. Exhaustion wins. A nervous system on red alert wins. Any pep talk given to said nervous system is bringing a Post-it note to a tornado.

And then we blame ourselves! Because obviously the problem is a personal moral failure, not a human being a human.

In forest therapy, we take a different approach. We don’t try to out-think the body. We learn to listen to it without judgment. In doing so, the body finally gets what it has been asking for all along. Safety.

Biology’s Rebellion: The Dangers of Overriding Nature

Many people living with chronic pain think they should be able to cope better.

They should be stronger.

They should push through.

They should be more grateful it’s not worse.

But here’s a humdinger of a thought. When your body is sending powerful distress signals, your conscious mind has very little leverage.

The attempt to escape from pain is what creates more pain.

–Gabor Maté

Neill Williams, on the Success Genius Podcast, explains it beautifully. When you are hungry, exhausted, or in pain, your biology overrides your attempts to think or feel differently.

The vagus nerve, your internal communication highway, links brain, heart, lungs, digestion, and the stress response. If that system is dysregulated, focus, creativity, decision-making, and connection all suffer.

Your body is a boundary of your soul. Treat it with care.

–Jean Shinoda Bolen

As I’ve said before. This isn’t a motivation problem. It’s a nervous system problem.

And until the body feels safer, it will keep turning up the heat.

Rushing: The Trap That Keeps Us in Survival Mode

There is more to life than increasing its speed.

–Ghandi

I dare say, we hurry through the day, override our limits, stay stimulated late into the night, fall into bed, wake up feeling four days past our bedtime, and repeat.

Then we wonder why our system is constantly braced for danger. We keep hitting refresh on the same nervous system and expecting a software update.

From a survival perspective, it makes perfect sense. Nothing in that cycle signals “You can stand down now.”

So the body continues to send messages. And they are rarely gentle. Whispers don’t usually create change. Pain often does.

To pay attention, this is our endless and proper work.

–Mary Oliver

“I Would, But I Simply Can’t.”

I often hear how wonderful forest therapy sounds.

I wish I could. Maybe someday. When life calms down.

But healing asks for time. Attention. Slowing down. Repetition.

Until then, forest therapy remains a lovely idea instead of lived remedy.

Word to the wise. Your body will keep requesting the appointment. It has an unlimited follow-up policy and will keep calling until someone answers.

If you don’t schedule a break, your body will take one for you, and it probably won’t be at a convenient time.

-Unknown

The Remarkable Power of Non-Judgmental Awareness

Here is where the shift happens.

When we practice noticing sensations without evaluating them, we step out of the inner fight.

Instead of:

  • This is bad.
  • Why am I like this?
  • I should be better.

(There are no gold stars for hating life correctly)

We try:

  • Warmth
  • Tightness.
  • Pulsing.
  • Cool air on my cheek.

No argument. No story.

Judgment activates defense. Awareness invites regulation.

The nervous system reads neutrality as safety.

The organism knows.

–Eugene Gendlin

Nature: The Ultimate Stage for Inspiration

The forest is a masterclass in non-urgency.

Nothing is asking you to be different.

Everything belongs. You. Belong.

Research into nature exposure consistently shows reductions in cortisol, blood pressure, muscle tension, and rumination.

But experientially, I’ve seen something even more important. People soften. Attention and breathing widens.

The body begins to renegotiate its alarm state.

Nature provides gentle sensory anchors. Light, texture, birdsong, air movement. These allow awareness without overwhelm. For someone with chronic pain, this is crucial. We are not adding more intensity; we are expanding capacity.

Astravore: (n) A soul that keeps feeding on hope even after disappointment- light-hungry, resilient, unbreakable. -ViviJan

You are larger than what is happening to you.

–Michael Singer

Silencing the Alarm: A Lesson in Balance

Imagine a car alarm that has been blaring for years.

You wouldn’t yell affirmations at it and tell it to be quiet.

You would look for the threat it thinks it perceives.

Non-judgmental awareness in nature is how we open the hood.

Each calm moment says, “No one is breaking in right now.”

Over time, the alarm system recalibrates.

My Story

I’ve experienced moments in my forest therapy practice when I wanted to do it all perfectly. To follow all the “right steps.”

When I go in with this focus I notice the pain is still there. The frustration is still there. I start thinking about all the years of pain I have ahead of me. Of financial strain. And the weight it adds to every relationship.

Then I remember to just breathe. Focus on today. Right. Now.

I start to feel the breeze on my face and hear it making its way through the trees around me. I sense the solid earth beneath me.

The pain does not vanish. But it’s not the only voice anymore. It has just been hogging the microphone in my head. 🎤 🤫

There is support available here whenever I need it. In the birds and the trees and the solid ground. This may sound odd. But this shift in thinking moves the pain inside a larger field of safety.

This is regulation. I just keep coming back to it.

The best way out is always through.

– Robert Frost

A Gentle Invitation to Explore

  1. Find something in nature that feels steady. A tree, a rock, the shoreline.
  2. Let your eyes rest there.
  3. Now widen your awareness to include three additional sensations that are neutral or pleasant.
  4. Move back and forth between the discomfort and the wider field

    You are teaching your nervous system that pain can exist without emergency.

    Do this regularly and the vagal pathways that support calm begin to strengthen.

    Don’t just do something, sit there.

    –Sylvia Boorstein

    The Real Result: Persistence in Life

    When regulation improves, people often notice clearer thinking, better sleep, and easier connection. Not because they forced positivity, but because their biology finally cooperated.

    You are no longer fighting upstream. You are being carried. Like these little bitty icebergs I watch on the river. Floating by. 👇

    The Closing “Peace”

    If we keep living in a way that ensures the alarm stays active, nothing changes.

    But when we make space, even small, consistent space for non-judgmental sensory awareness in the forest, the body hears something new.

    I’m safe. I can soften. I don’t have to shout today.

    And maybe, that is where my healing lingers. I just have to take time away, to meet it there.

    The body always leads us home… if we can simply learn to trust sensation and stay with it long enough for it to reveal appropriate action.

    -Pat Ogden

    Take care, my friends. I leave you with these February thoughts that gave me a little chuckle:

    My February workout plan is mostly just shivering until my muscles get tired.

    Love is in the air this February, but so is the flu, so please stay back.

    “Just Tired” Isn’t Even Close: Living with ME–CFS and Finding Healing

    pammunkholm

    The body is not an obstacle to the soul, but its instrument and means of expression.

    — Pope Saint John Paul II

    When I tell someone I have chronic fatigue, they often laugh softly, like I’ve made a dramatic overstatement.

    Don’t we all have chronic fatigue these days? I imagine them thinking.

    And I get it. Life is exhausting. The world is loud. Everyone is stretched thin.

    But when you add the ME part. That’s the myalgic encephalomyelitis. Suddenly the picture changes. Here is a quick breakdown of ME and some of its symptoms.

    ME–CFS isn’t about being worn out from a long day of being human. It didn’t start from lack of conditioning. I did not cause this.

    It’s about being tired all the time.

    Pushing through all the time.

    And paying dearly for it afterward.

    I like to share this graphic 👇🏼 that shows a breakdown of the name of the condition. More than a bad night’s sleep or a long, hard day. This isn’t a mindset problem. It’s not laziness. It’s not weakness. It’s a body that can no longer produce or distribute energy the way it once did.

    And that comes with grief.

    Grief for the skills and abilities I no longer have.

    Grief for the version of me that could say yes without calculating the cost.

    Grief for the way I worry I’ll be perceived (unreliable, flaky, distant) when really I’m just surviving in a body that demands a different rhythm.

    Unmasking the True Price of “Energy Takes Everything”

    I’ve had to pattern my life after my condition instead of pushing through like the rest of the world celebrates doing.

    And some days, that still feels like failure. Even though I know it isn’t.

    I’ve found a rhythm that works for me.

    And I want to be confident in it.

    It does not matter how slowly you go as long as you do not stop.

    — Confucius

    But here’s the part people don’t see:

    Everything takes energy.

    Take the feelings you have at the very end of a long day:

    Hard to find something to eat because every step feels heavy. Hard to have patience for the people in your space. Hard to think creatively or problem-solve.

    Normally, you’d say: I just need a good night’s sleep. Then I will be myself again.

    But when that good night’s sleep never comes. Neither does the motivation, the emotional regulation, or the clarity to solve even the smallest dilemmas.

    And those complications build… and build… and build.

    Then there’s the big life stuff I feel like I will never be able to address when I am always dealing with constant minor emergencies. A migraine. A vertebrae stuck out. Spasms.

    What’s my purpose? How do I set priorities? How do I live well in this body? How do I figure it all out when my brain just wants to sleep?

    Sometimes I end up spinning in a washing machine of choices that made sense in the moment:

    Made sense in the moment: “I have to eat well.” I go get groceries. Get home. Collapse. Can’t get back up. Order pizza (the dirty laundry I get stuck in a spin cycle with).

    Made sense in the moment: “I have to practice self-care.” I gather everything. Run the bath. Lay down… and don’t have the energy to actually do the care. Back to bed (the dirty sheets I get tangled up in).

    Made sense in the moment: “I have to take care of myself.” Someone needs help. I don’t respond. Then guilt rushes in and it steals what little peace I had left. (those laundry items that always pass on a grease stain, no matter how many times its been washed)

    So I’ve learned to live differently.

    My rhythm now is:

    • rest
    • spiritual study
    • learning
    • creating
    • easy self-care
    • easy and somewhat healthy meals
    • visiting like-minded souls
    • serving where I can
    • protecting my peace

    Nothing is set in stone.

    Nothing is required.

    It’s simply what works for me

    My story of ME

    It seems easy. I’m tired. I should sleep. But sleep doesn’t help. I just go between varying types of tired.

    Nerves are easily triggered with this condition. So bringing the vibrating down and the peace level up is critical.

    I enjoy baths. They initiate a truce with my body. Where the pain subsides. I can lay suspended and liberated.

    When I am in need of one of these sessions I lay in bed and think about how wonderful it would feel.

    Often I don’t have the strength to begin. To gather myself and my stuff. To stand while the tub starts to fill. To change temperatures by changing rooms. To rise and remember all the places in my body that are not aligned.

    It all becomes too much. And the fabulous results are lost in the desire to conserve what little energy I have.

    Your pace is not a moral issue.

    — Devon Price

    What the Science Says and Why the Forest Helps

    As a forest therapy guide, I’ve seen again and again how nature meets people where their bodies are not where culture thinks they should be.

    ME–CFS involves:

    • dysregulation of the nervous system
    • chronic inflammation
    • impaired cellular energy production (mitochondrial dysfunction)
    • heightened sensitivity to sensory input
    • post-exertional malaise, where even small effort leads to disproportionate crashes

    This means the body is stuck in a protective mode, constantly conserving resources.

    And here’s where the forest becomes more than beautiful scenery. It becomes medicine.

    Nature’s Recharge: Forest Therapy’s Cure for ME–CFS and Exhaustion

    1. Calms the nervous system

    Time in natural environments lowers cortisol and shifts the body from “fight-or-flight” into “rest-and-digest.” For someone whose system is always on high alert, this is profound relief.

    2. Reduces inflammation

    Phytoncides, which are natural compounds released by trees, have been shown to support immune balance and reduce markers of inflammation. The body doesn’t have to work as hard to regulate itself.

    3. Restores attention without effort

    Nature offers soft fascination. A gentle sensory input that allows the brain to rest while still being engaged. This is vital when cognitive fatigue makes any thinking feel heavy.

    4. Reframes worth and productivity

    In the forest, you don’t have to prove anything. Trees don’t rush. Streams don’t apologize for slowing down. The environment itself models a different definition of enough.

    For those of us living with ME–CFS, the forest reminds us:

    We are not broken machines. We are living beings adapting to different conditions.

    Embracing Serenity: Forest Therapy for ME–CFS & Deep Fatigue

    This practice is designed for very low energy days. No hiking. No goals. No fixing.

    The “Enough as I Am” Practice

    Time: 10–20 minutes (or less)

    Place: A bench, porch, backyard, park, or even near an open window

    • Arrive without performing
    • Sit or lie in a comfortable position
    • Let your body choose
    • Let one sense lead. Instead of scanning everything, pick just one: listening to birds or wind feeling air on your skin noticing light through leaves
    • Breathe like the trees. Inhale slowly. Exhale even slower.
    • Imagine your breath moving at the pace of a growing branch (not a ticking clock)
    • Offer yourself one true sentence. Silently say: “In this moment, I am doing enough.”
    • Leave before you’re tired. Ending early is not failure. It is wisdom.

    There is a difference between resting and quitting. One restores you. The other abandons you.

    — Bansky

    Strength in Unexpected Places

    Living with ME–CFS has taught me that strength doesn’t always look like endurance.

    Sometimes strength looks like:

    • stopping early
    • saying no gently
    • choosing peace over productivity
    • letting the forest hold what I can’t

    I am not lazy.

    I am not weak.

    I am not failing.

    I am adapting.

    Your best is what you can do without harming your physical or mental health. Not what you can accomplish when you disregard it.

    -Unknown

    And in the quiet wisdom of trees, I’ve learned something the world forgot to teach.

    A life lived slowly is not a life lived small. Sometimes, it is the bravest life of all.

    Us on New Year’s Eve before getting too tired and heading home around 10:00. Usually we are the people that when asked if we want to get together at 8:00 we wonder am?!? or pm?!? Actually never mind, both are a hard pass.

    Happy New Year! To all those suffering, you are not alone, your worth is not diminished by your ability, you are seen and welcomed here.

    Finding Self Compassion Through the Mirror of the Forest

    pammunkholm

    Resilience is based on compassion for ourselves.

    –Sharon Salzberg

    In the beginning of my chronic pain, before I had language for it, I fought it.

    I tried to outrun the agony.

    I tried to out- power the fatigue.

    I believed if I just pushed harder, rested less, proved myself more. I would get ahead of it.

    Instead, the harder I tried, the further behind I seemed to fall.

    What I didn’t yet understand was that I wasn’t battling weakness or lack of willpower. I was battling a body riddled with inflammation. A body asking to be soothed, not ignored. Not overridden. But met with compassion.

    There likely will never be a cure for my condition.

    But there can be healing. For myself and so many others.

    For me, that healing began when I stopped fighting my body and started listening to it.

    Healing in the Woods: A Transformative Quest

    When I found forest therapy, I was still angry. Still confused by my disability. Still grieving the body I thought I should have. Trying to figure out exactly what steps to take to “get better.” Whatever that means.

    Forest therapy didn’t fix me. But it slowed me down enough to meet myself honestly.

    Walking slowly among trees, I began to notice how nature never rushes itself into wellness. Trees scarred by lightning still reach for the sun. Fallen logs don’t apologize for dormancy. Fallen leaves aren’t failures. Moss thrives not despite dampness but because of it. They are part of the cycle that nourishes what comes next.

    In the forest, I learned to take time and space:

    For my body.

    For my care.

    For myself.

    I learned to soften.

    The photo on the left was taken this Christmas. On the right is a shot from one of my highest pain and least support years. Do you see the softening that has taken place?

    Nature became a mirror for self-compassion. Showing me that acceptance is not giving up, and rest is not weakness. That change is and always will be constant, and beauty is often found because of it.

    Where do your forest reflections take you?

    Tender and Fierce Self-Compassion: A Pathway to Healing Mastery

    If your compassion does not include yourself, it is incomplete.

    – Jack Cornfield

    Psychologist Dr. Kristin Neff, a leading researcher on self-compassion, describes two essential forms. Tender self-compassion and fierce self-compassion. Healing (especially in chronic pain) requires both.

    In the forest, tender self- compassion is offered effortlessly. Shade, stillness, permission to slow down. Tender self-compassion is the gentle response we offer ourselves when suffering arises. It sounds like,

    “This hurts.”

    “I’m allowed to rest.”

    “I don’t need to earn care.”

    Photo by Brent

    Self-compassion is simply giving the same kindness to ourselves that we would give to others.

    –Christopher Germer

    Self compassion also says,

    In forest therapy, tender self-compassion shows up as slowing down. Sitting instead of pushing. Letting the forest hold us when our nervous system is overwhelmed.

    But compassion is not only soft.

    Fierce self-compassion is protective. In the forest, fierce compassion looks like a tree growing around an obstacle instead of breaking itself against it. It looks like roots lifting pavement. Life insisting on what it needs. It draws boundaries. It advocates. It says no to harm. Even when that harm comes from expectations we’ve internalized.

    Fierce self-compassion involves taking action in the world to protect, provide, and motivate ourselves to alleviate suffering.

    — Kristin Neff

    For someone living with chronic pain, fierce compassion might look like canceling plans without guilt, choosing gentler paths, or refusing to prove pain through being productive. (Holy moly, have I ever been guilty of that last one!)

    The forest teaches this balance effortlessly. Life adapts rather than destroys itself.

    True healing lives in the balance.

    Softness without surrender.

    Strength without violent self talk.

    I highly recommend looking at Dr. Neff’s research.

    Beyond the Power of Positivity in Chronic Pain

    One of the most harmful ideas placed on people with chronic pain is the demand to “stay positive.” It is a reality many of us are quietly living inside. Through good intentioned humans or when we place this expectation on ourselves. Either way.

    This is not healing.

    This is toxic positivity.

    The forest is not positive all the time. It holds decay and beauty simultaneously. Rot feeds growth. Death makes room for life. Nothing is bypassed.

    Embodied compassion, unlike forced optimism, allows pain and beauty to coexist. Forest therapy has taught me that I don’t need to pretend things are fine in order to find meaning, or hope.

    Acceptance is not resignation.

    It is honesty.

    You don’t know this new me; I put back my pieces, differently.

    Embracing the Wild: A Practice of Compassionate Forest Therapy

    If you are able, try this practice in a forest, park, or any type of natural space.

    • Find a tree that shows signs of damage Look for scars, broken branches, or weathering. Notice how the tree continues to live.
    • Stand or sit nearby Place one hand on your body. Where you feel pain or tension most.
    • Name tenderness. Quietly acknowledge what hurts. No fixing. No reframing. Just noticing.
    • Name fierceness Ask yourself. What does my body need protection from right now? Fatigue? Expectations? Self-criticism?
    • Receive the lesson. Let the tree reflect back to you. Adaptation, not defeat. Presence, not perfection.

    Take your time. Healing doesn’t rush.

    Nature’s Note: A Message from the Forest to Your Body

    Dear Body,

    You are not broken.

    You are responding to what you have endured. And we know you have endured much.

    I have seen storms too. I have lost branches. I have rested longer than expected.

    Still, I grow.

    You do not need to push to belong here.

    You do not need to prove your worth through endurance.

    I hold decay and beauty at the same time.

    You are allowed to do the same.

    Rest when you need to.

    Stand tall when you can.

    Trust that healing is not the absence of pain, but the presence of care.

    You are part of this rhythm.

    You always have been.

    — The Forest

    That’s the thing about December: it goes by in a flash. If you just close your eyes, it’s gone . And it’s like you were never there.

    –Donal Ryan, The Thing About December

    Look into the mirror of forest therapy. Reflect where you need more self- compassion. Take time to recognize and lean into both tender and fierce. It will aid in all types of healing.

    Diefenbaker Lake: A Childhood Sanctuary

    pammunkholm

    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,

    to stolen keys and the single party I regretted

    before it even began.

    You held my honeymoon,

    my young love learning its way,

    and you held me still years later

    as chronic pain reshaped my life.

    Now I walk your trails slowly,

    letting forest therapy guide my weary body

    back into rhythm with the world.

    Your waves teach me presence.

    Your ice teaches me patience.

    Your seasons teach me trust.

    Grandparents gone on, Uncle David gone on,

    Memories gone on,

    yet their echoes remain in your wind.

    In every sail that fills,

    in every motor that roars to life,

    I hear them.

    My lake,

    always changing, always faithful,

    you have become a sanctuary,

    a place where the ache eases

    and beauty remains.

    Thank you for holding my childhood.

    Thank you for holding my healing.

    Thank you for holding me still.

    My lake.

    Some memories are not moments at all, but places.

    Victoria Erickson

    🌲When Comparison Becomes a Thorn in Your Forest 🌳

    pammunkholm

    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.

    -from 22 Quotes About Chronic Pain

    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.

    Comparison whispered: why even try?

    Fredrik Backman once wrote:

    “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.

    No one truly wins the “Pain Olympics”.

    –Lori Gottlieb

    Living with chronic pain means my days will never look like someone else’s. But that doesn’t mean they’re lesser—it just means they’re different.

    Brene Brown says:

    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.

    An All-Too-Familiar Tale in Misdiagnosed/ Underdiagnosed Female Chronic Pain: This Is My Story

    pammunkholm

    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

    ***DIAGNOSIS: fibromyalgia, myalgic encephalomyelitis chronic fatigue syndrome***

    ***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.

    Survival to Stellify: Rising From the Ashes to Be Placed Among the Stars

    pammunkholm

    Stellify

    means to turn into, or as if into, a star, to place among the stars

    I did not crawl through the shards of my own brokenness to live a mediocre life, I’ve prepared for magic.

    –Mandy Lauren

    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%.

    –Jim Kwik

    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.

    –faraway

    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.

    Physical: food, water, air, shelter, sleep, safety, exercise

    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:

    1. 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
    2. 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
    3. 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.”
    4. 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
    5. 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.”
    6. 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)
    7. 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
    8. 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.

    –@powerofpositivity

    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

    img_6304

    The company on my last walk was as outstanding as the wildflowers. Thanks for joining me!

    Hypermobility and Its Impact on Mental Health

    pammunkholm

    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

    img_5952

    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.

    1. How do I want to feel today?
    2. What is one thing that would help me feel content at the end of the day?
    3. 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.

    -Phil Tucker, The White Song

    Keep rising my friends!

    Chronic Struggles On The Daily: Behind the Scenes

    pammunkholm

    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:

    1. 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
    2. 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)
    3. then there are the fabulous medications that have been the answer to prayer, they finally gave me relief and hope; until they stopped working
    4. when the end result of a medication to manage the pain made me feel worse than the actual pain we were trying to treat
    5. 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)
    6. there’s the ones that make me gain weight and feel like garbage
    7. and the ones that make other conditions flare
    8. 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!