Tag: chronic illness

How to Be a Better Ally for Chronic Pain Sufferers

pammunkholm

I am wedded to wooded wanderlust; a true soulmate in the rough.

-Angie Weilland- Crosby

The Best Supporters and the Worst Naysayers

I love my support people. They are the ones who love me, have been with me along the way. And try to understand my world of chronic pain. They mean the world to me and some days they are the thing that keeps me going. This post is not directed at those loving and supportive people. But if they read this, they will get ideas of how to play defense for us chronic comrades in social situations.

You ask what I’ve been doing all this time; as if surviving wasn’t much of an effort.

-Ginnie Bale

I experienced a less-than-supportive exchange recently. I have discussed it with friends who are chronic comrades. They have experienced multiple similar conversations. Let’s talk about what my role is in someone else’s healing? How do I support? And how does it relate to honey bees? Find out more in this post.

First Things First

Join me on Facebook, Instagram and X. For quotes, reasons to forest bathe, updates and the odd pic of my super cute grandkids. If you know anyone that needs this information to be a better support person. Or, if you know a chronic comrade who needs to read this to know they are not alone. Please share.

When Helping Hurts: The Irony of Good Intentions

As humans we love to be fixers. We hear of a problem and we want to get to work solving things. Whatever we can do to relieve the suffering of another. But what if in our best efforts we are creating more pain? How do we support without making it worse?

Saying nothing sometimes says the most.

-Emily Dickinson

I have a dear friend who just had shoulder surgery. She struggles to get up from a seated position. I saw someone trying to help her stand. But in their best effort, they were pulling on her bad shoulder. She didn’t have the words to say, Stop! in her pain. As they yanked on her, she cried out. It made me think, how often in my best efforts am I creating more strain on my chronic comrades? Thinking I am supporting when really I am doing more damage than good.

Unlicensed and Unqualified: Keep Your Remedies to Yourself

One of the more painful things I have encountered since developing this condition. Is being told what I should do to fix it. As though I haven’t been trying for all these years. It brings up so many emotions for me.

When simple solutions are proposed, I feel they are questioning my motivation to get better. When they go on and on about supplements I’ve tried. Or therapies I know don’t work for me, I feel misunderstood. And alone.

When they ask where I’ve been and why I’m ghosting them. I don’t have the words to explain what being stuck in a flare means.

When they say I hope you feel better soon… 🤦🏼‍♀️

In Sorrow: Silence Speaks Louder Than Advice

One must earn the right to give advice to a chronic comrade. Do not offer unsolicited advice. A close support person that has been with us through the years has earned that right. A new acquaintance has not.

While we chronic comrades appreciate the effort. Whatever you think we should try, we have tried or it is not an option. You are not greater than my condition. You will not have the ability to swoop in and solve it. After years of me trying to do so.

As hard as it is for the average human to understand, sometimes there is no answer. We chronic comrades go through a grieving process to get to this place of acceptance. Do not interrupt that process!

My chronic comrades, how do you handle someone that is trying to help and doing more harm?

Try this idea on for size. What if we tried to see that everyone is here to teach us a lesson? What can I learn from this person’s response to hearing about my condition? is a good question. Is there a way to avoid this person in the future? is also a good question.🤷🏼‍♀️

Some cause happiness wherever they go; some whenever they go.

-Oscar Wilde

Sick of Oversharing: Trying My Best

Excited to announce I have just about had it. I feel like my body has had a check engine light on for months and I just kept driving it. ‘It’ll be fine.’ And now all the dashboard lights are on and some of them have started flashing. Sometimes life just sucks the jelly right out of your donut.

When life is going smoothly I can take terrible advice from someone, scoff, and carry on with my life. When life is opposing my every effort, it is much more difficult to have patience. This often happens in chronic conditions. It is a challenge to be patient with those who don’t understand.

This statement rings so true for me. And I hope all my chronic comrades can take this in. Say it with me: My Chronic Illness Is Not My Fault. Now say it again and mean it.

Chronic comrades do not need sympathy or pity. We don’t have time or energy for that. But when my condition and its associated symptoms are treated like moral failings. It drains what life energy we had left. So much of my energy goes to existing, I am stretched. I have a low tolerance for everything.

Here’s an odd question for my chronic comrades. When you meet someone new, how long do you wait to share about your condition? It’s like dating someone new and waiting to tell them you have kids. It’s gonna come up.

I have tried not to share about my condition. I have tried sharing just a snippet. But when someone asks what I do for a living, and I say, “My best, I just keep doing my best.” And they stare blankly at me waiting for the real answer. I eventually say somethings along the lines of, “I have chronic pain and I can’t work right now.” The conversation seems to shift.

My condition permeates my life. It has weaved it’s way throughout and there are not many topics that don’t touch on it. But in giving this much information people seem to think it is now their job to diagnose and cure me. They become Dr Quinn Medicine Woman. And inquire about medical history, medications, past surgeries and the like. They have all the solutions. Often their solution is that I just need some motivation. There is this surgery someone had. Have you tried yoga?

I look deep in their eyes and determine, I’m starting to think we aren’t in this together.

Newsflash

a person’s medical information is not up for your perusal. Do not ask invasive questions and Quit trying to fix them.

Bees Be Like My Chronic Comrades; Let Me Count The Ways

Let’s talk bees. Below, are some bee facts and how they relate to those with chronic conditions.

  1. There are more than 20 000 species of bees including bumblebees and honeybees. There are so many chronic conditions out there we can’t possibly have the answer to every one. Doctors are still working on how to treat them. Let’s allow the doctors and patients to figure that out.
  2. Male bees are called drones. Their only purpose is to mate with the queen bee. We all have a role to play. Those with chronic conditions will have to reassess the role they have assigned themselves at times. Checking in to make sure you are not playing the roles for others around you is key.
  3. Bees live in colonies. Those with chronic conditions rely on their support people. Do not force yourself into a role inside their colony without their approval. It’s like trying to change someone’s pants for them when they already dressed themselves that morning. Soooo awkward!😳
  4. Bees have different odor receptors to help them distinguish different flowers. Generally speaking, those with chronic conditions are able to distinguish the pain and frustration of a chronic comrade. Better than someone who has not experienced it. Do not be offended if your loved one with a chronic illness needs the support of other “bees”.
  5. A Queen Bee can lay up to 2500 eggs a day. You don’t see the queen. Anyone that is able to watch her will think she is just sitting around. But under the surface, great effort is occurring. This is her role and she fills is elegantly. My chronic comrades have been known to lay low. Sometimes that is our role. And I see my chronic comrades as elegant in the laying low and the emerging when it is time.

Here’s another suggestion for my chronic comrades in these awkward conversations, a wise man once said,

Bees don’t waste their time explaining to flies that honey tastes better than 💩.

-Willbur Glenn Colaco

Uplifting Allies: A Glimpse into Positive Support

This is what positive support looks like for me 👇🏼. How about you? Drop an image or remarks in the comments.

If I fall and you don’t know how to safely get me off the floor. Don’t yank and pull until I am crying out in pain, lie down with me until the ambulance arrives.

These are just ideas. These make my nervous system calm to know that someone else has felt what I am feeling. If you can find ways to relate to me, I feel less alone. I feel that when I think of my chronic comrades. I know I have chronic sisters who spend a lot of their time working on their eluxorama. I am inspired by them!

Eluxorama

The devotion to positive spiritual growth in the midst of underlying chaos or darkness

Surviving Life’s Ricochets: Finding Clarity Alfresco

Some days I enjoy time spent developing my eluxorama. Other days I say, ‘it is what it is’, then I turn around and vomit due to anxiety. Having a support person can take me from yelling, “Silence you uneducated peanut!” at those who don’t understand, to :

"Let me keep my distance always, 
from those who think they have the answers. 

Let me keep company always with those who say 
"Look" and laugh in astonishment
And bow their heads."

-Mary Oliver

Nature’s Finest Wonders

Get out and enjoy some forest therapy. There is so much beauty around us.

In nature nothing is perfect and everything is perfect.

-Alice Walker

Here’s some life lessons from our honey bee friend:

Photo by Lisa from Pexels on Pexels.com
  • stop to smell the roses
  • take care of your family
  • be loyal
  • work hard in your role
  • the sweetest things result from our efforts
  • cooperate and collaborate
  • watch out for nature
  • consider the needs of the group

Thanks for joining me. Whether you are a sufferer or a supporter or someone that wants to understand. Here’s the highlights. Make sure your helping is helpful and not harmful. Unless you specialize in my condition, or are a support person that has earned the right to an opinion. Kindly keep your remedies to yourself. Even if you have the best of intentions. Thank you, but no thank you. My condition is not my fault and yes, I have tried that. Do you see yourself in my bee analysezzzzz? I’ve shared what positive support looks like for me. Drop a comment for what brings your nervous system to calm. Develop your eluxorama and enjoy nature’s wonders. Take some lessons from our bee friends. Take care, my friends. 

"Some days she's a warrior.
Some days she's a broken mess. 
Most days she's a bit of both.
But everyday she's there
Standing. Fighting. Trying." 
-Anonymous

…as I wandered the forest, the green leaves among, i heard a wildflower singing a song…

-William Blake

Photo by Kristina Paukshtite on Pexels.com

Embrace Nature: The Power of Forest Therapy in ME-CFS

pammunkholm

Fjellro (Norwegian)- means “mountain peace” or “a quiet place in the mountain”.

I could use some mountain peace. My diagnosis of Myalgic Encephalomyelitis- Chronic Fatigue Syndrome (ME-CFS) demands that I find time and places for peace. Outdoors- if at all possible. The winter months make it less than practical in Saskatchewan. But the forests and spaces of nature are melting and inviting us to join their tip toe into spring. I will explore this diagnosis and why nature is so beneficial in today’s post.

Before that, if you haven’t already,

hit that subscribe button below for forest therapy inspiration weekly
☝🏼 Me today ☝🏼

I slipped on the ice again yesterday. Just a mini whoopsy daisy that would be nothing for the average Joe. But I am me. And it is not nothing.

This has been an atrocious year for ice. This is my third fall. Every time I fall I have to put in a herculean effort to get back to where I was physically. Which also takes a toll mentally and emotionally.

It means more painful days. And harder to sleep nights. It takes weeks (sometimes months), a few physio appointments to figure out what is happening and then I fall again!

Frustration at the setback is not a strong enough word. Exasperation. Fury at myself over such a mistake. Rage at the prospect of what this means for the days, weeks and months ahead.

Faith is a bluebird we see from afar. It’s real and sure as the first evening star. You can’t touch it, or buy it, or wrap it up tight, but it’s there just the same- making things turn out right.

-The Rescuers

My ME-CFS Diagnosis: The Mystery Illness That Would Have Ruined My Social Life If I’d Had One

Such an accurate depiction. Just getting dressed feels out of reach. Taking care of kids is a stretch but worth it. Although that knocks out fitness and and career (you can’t have it all!) Plans, hopes and dreams feel too far away to try to reach.

In my last post on Myalgic Encephalomyelitis (ME) Chronic Fatigue Syndrome (CFS) Living with ME/CFS: A Journey Through Chronic Fatigue I explained that when broken down the term means, inflammation of the brain and spinal cord with muscle pain. After years of wondering and then months of testing, I was told the master plan was to manage the symptoms and treat the pain. Forever.

Rubatosis is a newly coined term by John Koenig. He defines it in his book “The Dictionary of Obscure Sorrows”. It speaks to me because it is derived from the musical term rubato. I played piano for years. I loved songs with rubato. Rubato literally means ‘robbed time’.

When playing a piece of music that calls for rubato, the musician subtly speeds up and slows down. This ‘robs time’ from one spot and gives it to another. This inclines the ear of the listener as it is not what is expected.

Rubatosis is being aware of your own unsettled heartbeat. Sensing a nervous, irregular rhythm. Unlike the steady beat of a metronome, it feels erratic and frantic. This is one of the sensations I feel with ME. Along with that feeling of sorrow as originally intended. I sense a physically unsettled feeling that never shows up on any test. Doctors and their machines cannot find it. But the sensation persists.

From There To Here: Now What?

How does one keep fighting against such odds and thrive, not just survive this life? I believe this is where SISU can come in. I discuss sisu in another post if you want to learn more. Sisu: The Art of Thriving in Adversity.

Sisu is where perseverance and grit end. It is the second wind we find to go on. When you feel you have reached your limits, can you find your sisu? Can you meet yourself in this place of suffering and give yourself the time to grieve? And then push past your perceived limits. Those places that other people don’t have to go. Feel the frustration. And then advance. Arise. Flourish. Shine.

Also know when it is time to stop shining and go to bed. 😉

I recommend doing all you can to make your physical environment peaceful and comfortable.

Guilt-Free Zone: Moving Past Disability Guilt

Do you feel guilty about your disability? I feel like a burden on others. I see my inabilities and put aside my abilities. Let’s discuss the guilt that comes along with disabilities. Bring it out into the light so there is no shame here. You are not the only one.

  • I feel guilty when I struggle with an everyday task like walking the garbage to the trash can outside. I feel incompetent. I feel like a whiner. I feel powerless. So I do it anyway. And I slip on the frozen lake that is our driveway.
  • I feel guilty when I need to ask for help. I would rather just take care of things myself. But I have seen the repercussions in the past. It is an ongoing internal battle of pros and cons for the most menial of tasks.
  • I feel guilty for needing accommodations. My back starts to spasm when I think of sitting on an upright chair for any length of time. If I can’t recline, all the joints that are “out” have to work too hard. Little, tiny muscles are asked to do too much. And then they start to complain loudly. With inflammation and pain. But to bring a recliner camp chair with me wherever I go is demeaning. Even the super old people are fine in upright chairs. What’s the matter with me?
  • I feel guilty for needing more rest than others. It is a need I cannot ignore. I can pretend to be a “normal person” for one day. Maybe two. But then I will pay dearly for time that should have been spent resting &/or sleeping.
  • I feel guilty for quitting my job. I see others fighting through exhaustion and pain. Continuing to work. There are so many days I just want to ignore my body and join the rest of the world. Even typing that sentence makes my body react adversely.
  • And I feel guilty for not showing up. I want to be there. I want to do more. I want to see you. But my condition is not meant for this world. I have to create my own if I want to thrive.

The Vast Spectrum of Struggles: Understanding This Essentially Invisible Condition

What’s stressful about having an ‘invisible illness’ is that others expect you to have the same energy levels and stamina as people who are healthy, because you ‘look healthy’, which usually means you push your body past where you should in order to not appear ‘weak’ or ‘needy’.

-Hannah Lindgren

The symptoms and severity of this condition vary widely person to person. Some are home bound. Others even bed bound. I was there. I know what I, personally, need to do to keep myself from going back. This is what I can share with you.

It is not a cure all. Every journey with this serious neurological illness will be different. One thing sufferers will see in common is an exacerbation of symptoms with physical and mental exertion. Resting is ineffective at alleviating the symptoms. Waking exhausted is the daily norm.

ME-CFS is characterized by a profound dysfunction of the regulatory control network within and between the nervous system.

This interacts with immune and endocrine systems affecting virtually all body systems cellular metabolism and ion transport.

Rosalynde Lemarchand

A Nod to Jeff Foxworthy and a List of My Own: Both of Which Are Not to be Taken Too Seriously

Instead of Jeff Foxworthy’s famous, You Might be a Redneck, let’s play You Might Have ME-CFS. Disclaimer: I am not a doctor or medical professional. This is not intended to diagnose, it is for entertainment and introductory informative purposes only. If you have any questions, talk to your doctor. Also despite the fact that I said let’s play, this will not be fun.

You Might Have ME-CFS-

If you experience severe and debilitating exhaustion on a daily basis. if you have ever been too tired to answer a simple question, to turn your head to look at someone, to get to your bed and so you lay down wherever you are, you might have ME-CFS

If you have sensitivities to noise, lights, sounds, foods, odors and chemicals, if your guts are grinding and your brain is buzzing, your limbs are cramping, your eyes are tingling and your muscles are spasming and your extremities are numb, you might have ME-CFS

If your body overreacts to temperature changes, if the cold makes you convulse and the heat makes you nauseous and you get stuck feeling one or the other, then back and forth with no sense of order or balance, if your skin feels like a million pin pricks with each change in temperature, you might have ME-CFS

If you experience daily unexplained pain in your muscles and joints, if you have muscle weakness and reoccurring headaches, if you wonder what you will do when you are 80 since your body feels like it has aged 10 years in the last year, you might have ME-CFS

If you have brain fog to the point that it is often embarrassing and off-putting in a conversation, if you constantly struggle for the right word, forget the names of your friends, and lose track of what you were going to say every, single, time, you might have ME-CFS

If you struggle through exhaustion all day and then equally struggle to get to sleep and stay asleep all night, if you have night sweats and chills, if you have extra pajamas by your bed, just in case you sweat through the first round, you might have ME-CFS

If you struggle with lymphatic fluid blocks and swollen or tender lymph nodes, if you know the spots to massage and what to leave alone, if you struggle with nasal passages staying clear and swollen glands, you might have ME-CFS

Pretend You Have ME-CFS: The Hilariously Not Funny Guide

The symptoms are one thing, how they dismantle our lives is another. I have a different list in my other post on ME. Here is a new list of how to duplicate the feeling of having ME for anyone that wants to know. Like a partner trying on a pregnancy suit to find empathy for their expectant wife. Here we go. How to replicate the symptoms of ME-CFS:

  1. drink a bottle of wine and all the espressos you can hold (I don’t drink either but you get the point, something to make you sleepy and something to keep you up for 3 days straight)
  2. dump a load of rocks onto your bed and lie down
  3. have someone lay multiple weighted blankets on you
  4. invite someone with the flu virus to cough in your face and wait for that to take effect
  5. call on a friend with a toddler to jump all over you, especially directly on your joints
  6. inject your muscles with lactic acid until it feels your limbs will fall through the mattress with dead weight
  7. ensure you have live bare wires placed around you, the shocks you get will be equivalent to the body shocks we are so fond of
  8. have someone dump all the ice cubes they can find on and around you, touching your bare skin until the sensation of pin pricks starts, then have someone prick you with pins, small pins are fine
  9. turn on all the florescent lights and place them directly over your eyes, no blinking!
  10. Lastly, have your niece that is learning violin over to practice directly by your ear

Chronic illness is tricky. People don’t know what to say. When someone has an illness that they beat, they are applauded for their ability to overcome. As they should be! When someone dies, we remember them for their strength to the end. As we should! But in chronic illness, people ask if you are better yet. What will the doctors do? As though you haven’t tried everything. They look for improvement and see none and wonder when you will start trying.

I’m Not Tired, Just in a Long-Term Relationship With my Bed!

Recherche Women

Some women are made
of steel, stones, tears, 
dust, bones and scars
Others are made of books, music, 
rainfall, stardust, moonlight,
flowers, daydreams
And wild adventures.
The rare ones are made of both. 

-Omoehi Ehixojie

Just because the past is painful, doesn’t mean the future will be.

-Meet the Robinsons

Forest Therapy: The Only Time Talking to Trees Isn’t Considered Crazy

I need to be alone for certain periods of time or I violate my own rhythm.

-Lee Krasner

My way through. Forest therapy. I don’t openly share the invitations that I use in my forest therapy practice. They are what I use when I take individuals or groups on walks. There is an added benefit to utilizing silence, meditation and the many practices I have to offer.

Click to my How To Get in Touch page to reach out if you have any questions. If you’d like to know when my walks get scheduled, follow me on social media. Search sunbeam acres on Instagram, Facebook and X.

Tickling All Five Senses for a Brilliant Nature Connection Adventure

Engaging all five senses is tantamount to the forest therapy walk. Enlist your eyes, ears, nose, fingers, and taste buds to join you. Following is an example of how that looks.

Sight- (this one is easy, you can look at a book of nature to get that, but you are missing four other senses when that is all you have) take time in nature to notice what is around you, the colors, the shapes, the relationship between the forest and fauna.

Sound- the birds are singing their songs, we can hear the breeze, what else do you hear, listen for what is near, and then further and further away, then nearer and nearer

Smell- what trees are near, do they have a scent, is there mud or dirt, decaying wood, pinpoint different scents and then how would you describe the overall scent of this space in nature

Touch- a variety of textures are accessible in any space in nature, the bark of the tree and any body of water nearby are what come to mind first, what else is handy, a ladybug to crawl on your hand, a light brush over a patch of grass, toes digging into the sand or dirt, what else

Taste- this one can be tricky, lots of forest therapists bring a thermos of hot water and add bits of the forest to use in a tea ceremony at the completion of the forest therapy walk, make sure you know what you are putting in if you decide to go this route, only use what you are very familiar with, some of the places I go have Saskatoon berries or honeysuckle (just don’t eat their berries) use what you know and learn more about what is safe in your area, you can always bring a snack from home to engage this sense while on your forest bathing walk

It’s Not Woo Woo: It’s Science, Just with a Side of Quirk!

Connecting with the forest through all these and more sense helps me to balance a nervous system. And that is not an easy feat with my life! I promise you it is worth feeling a little quirky at first. For those that think this is alternative medicine linked to the supernatural. Let me assure you, it is no such thing. The science behind the practice is proving the benefits.

If you’d like to look at a couple of those scientific studies:

👉🏼Here is one that shows how woodland sounds help with relaxation more than meditation apps.

👉🏼Another on how the sounds of nature relax our bodies and help them go from fight-or-flight to rest-and-digest mode.

👉🏼And one more that shows the psychological and physiological benefits of forest bathing in bamboo forests.

These studies are copied from Forest Bathing Central You can head to their page to find a monster list of the research they’ve compiled on the physical, emotional and mental effects of forest bathing. Forest Bathing Central check them out!

Ralph Waldo Emerson knew where it was at. He was a forest therapist long before it was a term. Check this out, he said:

Few people know how to take a walk. The qualifications are endurance, plain clothes, old shoes, an eye for nature, good humor, vast curiosity, good speech, good silence and nothing too much.

I’d go for a walk with him any day. Take care my friends. Watch out for the icy patch!

Understanding Depression in Chronic Illness: Signs and Strategies

pammunkholm

I walked a mile with Pleasure
She chatted all the way;
But left me none the wiser
For all she had to say.

I walked a mile with Sorrow
And ne’er a word said she;
But, oh! The things I learned from her,
When Sorrow walked with me.

-Robert Browning Hamilton

Have you found learning in your greatest sorrows? Chronic pain has changed the landscape of my life. Through the sadness and heartache. It has been my own school. A specific training.

Searching for Joy in the Gloomy Neighborhood

As humans, we all experience seasons of grief and depression. There are times in this life that those emotions are the correct and measured response. Chronic everything has led me to more than one season of grief. But I don’t want to live in the neighborhood of depression. It is appropriate and healthy to visit grief and sadness at times. However, I believe that to live in the community of peace and joy will give me the greatest satisfaction.

Today I will explore the relationship between chronic illness and depression. I will share what I have noticed, and what has helped me.

I want to take a moment to send a shoutout to all those that have subscribed to the blog. And a big thank you for all the loving feedback. If you know someone that suffers with chronic illness, chronic pain, &/or chronic fatigue. Take a minute to share either my landing page: sunbeamacres.ca or any specific post. There are so many people that are hurting and have tried it all. They have lost hope. I was there. I don’t want anyone to suffer the way I did for a moment longer than is necessary. Offer them a sunbeam of hope.

Do you know the signs of depression? Would you recognize it in yourself or others?

Disclaimer: I am not a trained counselor or psychologist. This post is meant to be used as suggestions from a friend. A friend who has been there. If you have medical issues, talk to your doctor. If you have mental health concerns, talk to your therapist. If you are looking to break the cycle of unmanaged pain and fatigue, that’s where I can help.

What You Need To Know

Here is a my list of things to watch for in regards to depression. This is not meant to diagnose. Just to raise a red flag for you to talk to your doctor.

  1. Brain fog- this is tricky because brain fog is a side effect of our illness, our medications, our inability to sleep, but if you notice an increase in brain fog, take note (literally, write it down or you will forget)
  2. Messy- there may be a lack of care for appearance and living space, again some people are just messy, this is more mess than usual, and not caring about it
  3. Feeling worse around others- you know the people in your life that lift you up, if you feel dull and dragged down around your tribe, that indicates something is off
  4. Your own thoughts drag you down- have you heard of ANTs (automatic negative thoughts) these are powerful and constant, pay attention to the ANTs, the way you talk to yourself internally
  5. Hobbies are not energizing- we all need creative and physical outlets, those activities that normally bring you joy suddenly seem like a chore
  6. Acting more irritable and trying to drag others down with you when going into a depression spiral
  7. Wanting to be at home, alone, all the time- some of us are home bodies, but having a desire get out and socialize is part of our beings, we get to choose the tribe and the activity, I don’t think we can choose to not need anyone
  8. Constant fatigue- again, tricky with meds and side effects and flares, but for no other reason, you are more fatigued than usual
  9. View of the world is negative- we all have to navigate this world we live in, it can be tricky, but when all we can see is the dark side of everything, something is up
  10. Losing dreams and goals- lack of mental energy to plan ahead, all you can see is a dreary future

Do you see yourself or someone you love in this list? How about in this image? 👇🏼 When we ignore the signs of depression, it will start to manifest in physical symptoms.

The Wacky World of Chronic Illness Factors

Do you have triggers that initiate your depression? It’s good to know your triggers. And yet, in my experience, anything can trigger depression in chronic illness. Cold weather. Holidays. Waking up. Going to bed. Getting together with friends. Not getting together with friends. There are so many layers of emotion.

are u ok? im literally a forest fire and i am the fire and i am the forest and i am the witnesses watching it

@fringeffect

I used to daydream of a time when I would have no more pain. My life would realign with the trajectory I’d planned for it. But waiting and waiting for something that is never coming led me to despair. With each setback I slipped farther and farther.

Maybe you are like me. When all these emotions hit me, I pushed through. Thinking there were no other options. And (no surprise), the next stop for me was burnout.

Burnout is sneaky because you don’t realize you’re borrowing from tomorrow to push through today.

Emily Leahy

Brain Power Showdown: Healthy Minds vs. Chronic Pain

I have seen images of healthy brains and the brain of someone with chronic pain. My limited understanding (also not a neurologist) is that a brain can be damaged over time. In someone with chronic illness. There is constant activity in centers that should normally be at rest. Information starts to be processed differently. This could explain why over time we develop symptoms such as anxiety, depression, sleep disorders, and difficulty making decisions. The toll our brains take on a daily basis when dealing with pain is no joke.

When I am in crisis mode mentally. My brain is not to be trusted. It is overwhelmed and overworked. Our brains are designed to protect us. But left to their own devices, they do a terrible job. We have to manage them. Especially when they are also dealing with chronic illness. But don’t worry. You are still inside there.

Don’t think the garden loses its ecstasy in winter. It’s quiet, but the roots are down there riotous.

-Rumi

Brain Games: Boosting Your Mental Superpowers

I am learning to manage my brain and my emotions when depressive thoughts come up. Part of that work is affirmations. I can find the words to let go of what is not useful or regain balance with what is useful. For example:

Over generalization thought: “I failed at this so I am a failure at everything.” Counteracting affirmation: “A bad day does not equal a bad life”

Minimizing thought: “Sure I’ve done hard things. But other people are better.” Counteracting affirmation: “My chronic illness does not define me. I can still do hard things.”

Apathetic thought: “I will never get better, why do I even try to manage it?” Counteracting affirmation: “I am worthy of healing.” (healing is different than cure)

Catastrophizing thought: “This is awful and it will never get better.” Counteracting affirmation: “There are good days ahead.”

Isolation thought: “I don’t belong with my loved ones anymore.” Counteracting affirmation: “Not all my thoughts are true, depression lies to me.”

Perceived burdensome thought: “I make their lives harder because I am this way.” Counteracting affirmation: “I am not a burden on those around me, I only think I am.”

Comparison thought: “What is wrong with me? Why do I need so much more sleep?” Counteracting affirmation: “Rest is important and my body deserves it.”

Give Your Negative Thoughts a Run for Their Money: Six Questions to Ask

When an affirmation isn’t enough to chase those negative thoughts away. Here are 6 questions to ask yourself:

  1. Is this thought true? Can it be proven in a court of law? e.g. Thought: I am too much for people. True? Not necessarily. Maybe for some people. Or in some situations. It is an opinion. It is not a fact.
  2. Is there evidence to prove it? Thought: I can’t handle the pain. Evidence? It sure feels like it some days. But the evidence would suggest that you have been and will continue to handle the pain.
  3. What is a more helpful thought? Make sure it is a true thought that you offer yourself. e.g. Maybe I am too much for some people now that I have a chronic illness. And maybe that’s okay. Maybe I like being my true self more than catering to the needs of other people.
  4. Is there another way to look at it? Going back to the second example, the thought that I can’t handle the pain. What do I need to survive this flare? Who are my people and what are my supports in place? Start to see the way out.
  5. Am I jumping to negative conclusions? Maybe I was never too much for anyone in the first place. The amount of negative energy we spend on anxiety over something that never has and never will happen, is ginormous.
  6. What would I say to a dear friend in the same situation? I would speak gently and lovingly to a friend in pain. I would not expect more than she was able to give. I would honor her needs. Can we learn to do that for ourselves?

Healing: A Hike, Not a Sprint!

Instead of absorbing all of the thoughts that your brain produces. Try observing as though you were on the outside looking in.

I do not want to give the impression that if you follow this simple list. Poof! Your depression will be gone. The journey out of depression takes time. It takes mending.

Mending is a story on a sleeve. Mending is resiliency. Mending cheers the heart and soothes the mind. Mending is clever, ancient and wise. Mending is hope. And mending is healing.

How are you healing? I find chronic pain is best survived by surrounding myself with people who understand and commend my quiet, everyday courage. The bravery shown by just getting up some mornings. To a body that does not behave. And a life that is more stressful than most.

Something else ancient and wise that soothes a body and soul. FOREST THERAPY!

Connect with Nature Through Forest Therapy!

We often forget that we are nature. Nature is not something separate from us. So when we say that we have lost our connection to nature, we have lost our connection to ourselves.

-Andy Goldsworthy

I feel this in the winter months. I lose a connection to myself. And to the healing that is available through the earth. I miss having time in nature. 

The mountains are in my bones. 
The rivers my veins.
The forests are my thoughts,
And the stars are my dreams.
The ocean is my heart,
Its pounding is my pulse.
The sounds of the earth write
The music of my soul. 

-Wild Woman Sisterhood

I love nature. I love its music and rhythms and breath. I love its beauty and majesty. It has been my greatest earthly physician.

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influence of the earth.

-Henry David Thoreau

Wrapping It All Up with a Bow!

Chronic everything is heavy. Visit the land of grief and sadness but do not get trapped in the neighborhood of depression. Recognize the signs in yourself or your loved ones. We have a lot of triggers. Including a different life than the one we had planned. I did not plan to spend my 40s living like the grandparents in Charlie and the Chocolate Factory. But some days. 🤷🏼‍♀ h️ere we are. Be aware of burnout. Chronic pain actually changes the way our brains look and work. Do not discount your struggle. Practice managing your brain by countering negative thoughts with positive truths. Challenge sticky negative thoughts with the six questions. Mending and healing happen best around those who understand the struggle. Forest therapy helps!

Watch my social media to stay up to date on my forest therapy schedule. TBD once the trails are clear.

I’ve Got a Question for You: Enriched with a Gaelic Blessing

You get to decide who you will be. I choose to be the girl on the right. I choose to be a success story. For anyone that wants to join me in this. Here’s my advice: Wear your best clothes! Light your best candles. Get excited about your health and wellness goals. Don’t save them for a future version of you. You are worthy of good things. Now! In whatever form that may be. Get going on your best life. It will look a little different than you had planned, but you are trusted to carry this burden. If you look around, you will see people you are teaching as you go through your suffering. It is not without purpose.

To help you find the strength to keep digging, I leave you with this Gaelic blessing:

Deep peace of the running wave to you
Deep peace of the flowing air to you
Deep peace of the quiet earth to you
Deep peace of the shining stars to you
Deep peace of the gentle night to you
Moon and stars
pour their healing light on you...
Deep peace to you.

(doesn't that make you want to go into the forest?!?)

Coping with Chronic Pain: When to Break the Silence

pammunkholm

Winter sunlight is a warm old soul, spreading love in the bitter cold.

-Angie Weiland- Crosby

Exulansis

Have you ever heard of the emotion, exulansis? It is the tendency to give up trying to talk about an experience. Because people are unable to relate to it.

Can my chronic comrades relate?

I have lived in that space. Until I started this blog. It is a way to talk about my journey. It was lonely to keep it all in. It felt like I was the only one. But I keep hearing of people who are reading the blog and have had similar experiences. We are not alone.

Have you subscribed to the blog yet? Go to the bottom of the page. Hit subscribe. Just fill in your name and email. And you’ll get a weekly email with a link to the newest post. Please share with anyone who would benefit. From the discussion here. Or from a walk in the forest. And watch my social media. (Instagram, Facebook, and X). For upcoming forest therapy walk dates and times as the weather warms up.

Masking the Pain

I try to hide the pain. In social settings I smile and visit and try to be present. When I see photo evidence I recognize I am not as sneaky as I think I am. Why do we do this? Why do we hide chronic pain?

I have some thoughts. But I’d love to hear yours. Comment why you think we hide the pain in chronic illness? Here’s my non- comprehensive list of why I think we hide the pain:

  1. With invisible illness there is a fear of not being heard or taken seriously
  2. Some people choose to be private about what they are going through
  3. When people know, they treat you different
  4. Previous negative experiences when sharing
  5. It is almost impossible to put it all into words and the emotion is close to the surface
  6. Social pressure to be normal- to make others comfortable
  7. Shame and guilt- in all its forms
  8. Avoiding the feeling of being a burden, needing pity or sympathy
  9. Fear of judgment- have you met people? They’re awful!
  10. Denial of the illness and its effects- ‘I can do this on my own’ type of attitude

☝🏼 Can you see yourself in this list? What would you add? ☝🏼

The Health- Privileged

Those privileged enough to know only health do not understand. How could they?These are the ones that will ask if you are better. They are watching only for improvements and progression to a cure. It does not occur to them that your chronic illness does not come with such commodities.

While this can be frustrating. I find it helpful to have a sound bite ready to go for such cases. Instead of staring blankly while your mind searches frantically for where to start. Not everyone needs the whole story. Just a few sentences. ‘My illness is chronic. I have better days and worse days. And for now that is as good as it gets.’

This method is not foolproof. ☹

We can honor our own progress in a way superior to what someone on the outside can provide. From past experience we know how this goes. It might be hard today, easier tomorrow and hard again the next day. I choose to meet myself where I am. Regardless of improvements and progression in the standard way. And that is my route to healing.

The health- privileged will not understand. But as a group of chronic comrades we can provide that understanding for one another. It is said, Health is a crown and only the sick can see it.

Chronic Comrades

I THINK IT'S BRAVE
by Lana Rafaela

i think it's brave that you get up
in the morning even if your soul is very weary
and your bones ache for a rest

i think it's brave that you keep on
living even if you don't know how to 
anymore

i think it's brave that you push
away the waves rolling in everyday
and you decide to fight

i know there are days when you 
feel like giving up but i think it's brave 
that you never do

I am thankful for the few on the outside that want to understand and help. Here are some helpful tips for those of us that live with and love those with chronic illness. Here are some things that seem small but are actually big to those that are suffering:

  1. checking in on us makes us feel loved- even if we can’t hangout, the connection is significant
  2. being heard- having someone hear us and trust our ability to handle it, not take over and offer unsolicited advice
  3. when I say I need to rest and someone rests with me- I don’t need to be motivated, I need to be supported
  4. comfy clothes- they are the only way for my arms to get through a day
  5. going at my pace- whether walking or making a plan, I appreciate being able to move at my own pace
  6. when someone asks how I am and I answer with the standard ‘Fine’ they ask, but how are you really? I feel seen.
  7. meeting people going through something similar- another reason for this blog

You Should Know

It’s important to know that people with chronic illness will have stomach issues, dizziness, nausea, headaches, joint pain, muscle pain, fatigue, and more everyday. These are all essentially invisible. Especially for those who have learned to cope. My grandma knew how to cope. I hope I can emulate her example. Remember you never know who is in pain just by looking.

Coping vs Shutting Down

Is this is the main reason to hide the pain? Is it a coping mechanism? We cannot moan in pain all day long. Learning to listen to your body and ignore the pain is a skill. What are the right coping mechanisms in chronic illness?

Dr Gabor Mate said, When you shut down emotion, you’re also affecting your immune system, your nervous system. So the repression of emotion, which is a survival strategy then becomes a source of physiological illness later on.

Is this also true in a way for shutting down pain centers? What is the difference between coping and shutting down? To me, coping is a way through the pain. Through the darkness to the other side. Shutting down is staying stuck in the discomfort with no plans to get out. This is where I found despair. When we grin and bear it instead of answering the call for what our bodies need, what does it cost? Does it take a bad situation and make it worse?

Maybe you have had a similar experience to mine this week. A new symptom appeared. Instantly, I have so many questions. Is this a symptom I will have as my new baseline? Is it just a flare? How will this affect everything else? Can I handle this?

I’m sick not ugly, thank you very much!

Hiding Below the Surface

We often fill our day until it is overflowing. I believe that this is true especially for women with chronic illness. Then everyone wonders why this Mom is such a mess. At least that’s what happens at my house. 🤷🏼‍♀️

Like a water balloon that can only handle so much weight before it tears. Ask yourself, what was in that balloon that it could not handle one more drop of water? What is already happening under the surface that is filling your balloon to bursting over an insignificant event? Here are some possibilities:

Emotional dysregulation. We all have emotions. Do you know how to handle the negative ones? If not, they can sit and fester like a wound. Chronic illness comes with its share of negative emotions. Constantly filling our cup up to and over the brim if we don’t learn how to process them. In a healthy way.

Lack of understanding, empathy and compassion. We all crave being understood and cared for. In chronic illness there is an added bonus of feeling misunderstood in the medical world. Finding that understanding somewhere is vital and replenishing.

Mental exhaustion. It is not just physical fatigue we deal with. Trying to figure out what to make for supper when the mental exhaustion has set in is awful. Like trying to thread a chicken through the eye of a needle. Mental exhaustion is not something that can be ignored. It is in your face.

Self deprecating thoughts about how you should be able to do more. No matter what we do as moms and women, we want to do more. Exponentially so in chronic illness. We think we should be able to do what we used to do. We wish we could be ourselves again. We think we should have the ability to push through. Just like the rest of the general population.

I was sick yesterday. Having a minor cold or infection is a big deal in chronic illness. It causes a flare in my other symptoms. My body aches were quite enough before this bug. The fatigue that comes and stays with any upset in the baseline is debilitating. What little time or energy I had is sapped out of me. And recovery is not quick. It is a long and slow process.

Add to the list: anxiety, frustration trying to find the words to communicate, sensory issues, and hormones.

Once overstimulation hits, I know I have already passed the point of no return. Overstimulation is not being able to focus. Everything feels overwhelming. I can’t remember or process anything. Everything is irritating.

From Overstimulation to Emotionally Regulated

Then what? What can you do to move through this situation and come out with minimal effect? How do we cope and not shut down?

Please congratulate me on my new position. It is the fetal position. I will be in it for a while.

-@kristen_arnett

The first step is to remember that you are not selfish if you need to remove yourself from the overstimulating situation. You are allowed to care for yourself. You are allowed to opt out of overwhelming environments. Getting adequate rest is not an indulgence but a necessity. Crying is one way the body regulates itself. Go ahead and cry. It is not weak. Forgive yourself for any reactions. You have limits and that is okay. Learn to listen to them. Honor them.

Unlocking Your Full Potential

You are meant to thrive. Not just survive. My veins are filled with stories of survival. Surviving looks like flight, shutdown, protection, fighting, impulsivity, mistrust, rigidity, critical of others, anxious, anger, defensive, collapsing, freezing, fear, submitting, shame, despair.

While thriving includes regulation, connection, resilience, prosperity, goodness, passion, love, contentment, expansion, well being, ease, play, rest, repair, joy, trust, growth, stillness, presence, and health in all its forms.

Shout out to all those making their life with chronic illness a life of thriving. You don’t let anyone see your darkest moments. Nobody knows the effort. I know how hard it is to transform yourself. Silently battling and winning. Be proud of every little step you are making. Keep going! You’ve got this!

I find it easier to thrive when I am with the right people. They are the ones that help me to feel sunshine when I am around them.

Forest Therapy has been my way of coping. It is healthy and beneficial in so many ways. This is not a hike, this is deliberate invitations that lead to learning and healing. Join me in the forest when the ice has melted. We can get on the trails in and around Saskatoon for some much needed forest therapy. My body does not winter well. I am anxiously awaiting. Spring! Dates and times TBD. Watch my social media to see when and where. If you have any questions reach out to me.

Tell me, when was the last time you ran through a field just to feel the freedom of creating your own wind.

-Author Unknown

Explaining and Embracing Life with Hyper Mobility Issues in My Tissues

pammunkholm

And a softness came from the starlight and filled me to the bone.

-W B Yeats

I yearn for this type of softness. Nature provides the way. Even if nature and I are not currently on the best of terms.

Gluggaveour (Icelandic)- (n.) “window- weather”; a weather that looks so nice and picturesque through the window, until you’re actually outside in it; a weather best enjoyed only behind the window. (If that doesn’t describe Saskatoon these days, I don’t know what does)

I. Am. Cold. My body does not like to be cold for several reasons. One of them being my hyper mobility issues. My bones are on a subluxation mission this week. Making my muscles work overtime to hold me together. When I go outside and my muscles tighten up in response to the cold, there isn’t much left to tighten. It feels like I am full of rubber bands that will snap at any time. Today I will be sharing more information on hyper mobility issues. And what to do about it, here on the 124th of February and when spring arrives!

Is there nothing to sing about today? Then borrow a song from tomorrow; sing of what is yet to be. Is this world dreary? Then think of the next.

-Charles H Spurgeon

Forest Therapy Helps

First take a moment to think of one person you could share this blog with. Someone with chronic issues. When we tell our stories, we don’t feel as alone. It is a chance to lift others. If you know someone who will benefit from the camaraderie. Take a moment to hit the share button and send this post or my landing page (sunbeamacres.ca) to them. Make sure you are subscribed. To keep up on all things forest therapy in the spring. Find me on instagram, facebook and X! Tell the others.

Reality vs TV Dramas

My chronic comrades, am I the only one who sees the irony of medical dramas? Maybe there are such hospitals. And maybe there are such doctors. But I have not run across the ones who pause their lives for hours. I’m confident they don’t sit in their office thinking only of me. They don’t throw a ball in a repetitive manner while trying to solve the complex issue of my body. They haven’t run all the tests and stopped at nothing to provide me with answers. Until suddenly, they have the answer (after their hour of regularly scheduled programming obviously). I have not experienced this. Have you?

More like, “After minimal deliberation, we’re pretty sure you are faking it.” First of all, how dare you, sir.

Chronic

Recently I was asked what the doctors are going to do. Because it seems like I am not getting better. I didn’t have the words in the moment. But chronic is chronic. And not every condition has a name. And they definitely don’t all have solutions.

If someone is unable to find solutions to their chronic condition, it is surely not for lack of trying. Hope in chronic illness does not mean hoping for answers. Or miraculous recovery. Or even hope of regaining a certain level of functioning. Those are out of our hands. Even if we are doing all the “right” things. Hope with chronic illness involves trusting your ability to manage whatever your condition throws at you. You will be capable of handling it. And your life can still be full of joy. It is worth living!

Hyper mobility/ Ehlers- Danlos Syndrome

If you missed my last post about my hyper mobility syndrome, I have an undiagnosed connective tissue disorder. Akin to Ehlers- Danlos Syndrome (EDS). I share many of the same symptoms.

This is a fitting description of my symptoms. Resulting in chronic pain.

Having hyper mobility, Ehlers- Danlos ish Syndrome is like if you ordered your structural collagen from Wish. Skin from Shein. Organs from Temu. It looks like it should function. Just not quite up to par.

Describing Chronic Pain

Chronic pain is part and parcel of what I have. If I were to describe that pain. It’s like leg day at the gym was yesterday. Everyday. All the time. Forever. And it’s not just my legs. I have that pain everywhere. Some other people describe what it’s like to live with hyper mobility/ EDS.

It feels like I’m 80. But I’m only 40. – Kimberly A Bates

It feels like having the flu. All the time. -Linnie Lin

I’m slowly disintegrating into particles. – Sarah- Marie Zeraphic- McFarlane

I feel like a marionette and someone else is in charge of the way I move. – Nicole Hess

It’s like riding a bicycle with very loose bolts. – Melissa Drennan

EDS is living the day after a car accident in perpetuity. – Sabrina Winchester

You cannot trust your body to do what it is supposed to. – Emma Stathopoulos

The hair on my skin hurts. – Mary Carlson

I feel like I am falling apart at the seams. – Lisa Sinnott

EDS is feeling insane for years because people tell you there is nothing physically wrong with you, when you know there is. – Sarah Elizabeth Erwin Bloom

The cruelest symptom of our disease is disbelief by medical personnel. – Mary Carlson

It’s like falling down the up escalator indefinitely while bystanders speculate about how you got there, what your injuries might be, and if you really even look hurt. – Jess Elsen

Hormone Changes

One negative aspect of my hyper mobility is the hormone changes that come with being female. Progesterone is known to increase subluxations. Especially leading up to the week of menstruation. Joints loosen and pain tightens muscles. A tragic combination.

During pregnancy there are other hormones present that loosen joints further. Creating a need for the muscles to work overtime. Then add to that the trauma of pregnancy. And giving birth. Looking back I can see why my body gave up on me in my 30s. My 20s were super hard on it. How many of you could say the same?

I miscarrried a baby in 2013. While the loss broke parts of me, the physical strain would have been too much at that time. We had 16 weeks together and I would have gone all the way if it had been up to me. But it wasn’t. I was blessed to have all 3 of my boys in my early 20s. When my body was up to the challenge.

I wanted that one more baby so, so bad. For so, so long. The loss was devastating. Following a short time, I was advised to get a hysterectomy. To solve a large part of the hormone cycle- subluxation cycle- pain cycle. It was all getting to be too hard on me. The idea of letting go of my little caboose to fill out our family, was heartbreaking. I still miss that precious one. But the physical damage was increasing in severity. Spreading to my nerves. So I made the heartbreaking decision to have a hysterectomy. That’s all I’m ready to share on the matter at this time.

We are often told if something doesn’t kill you it will only make you stronger. I agree. But some days I don’t want to be any stronger.

The Chronic Cycle

There are other parts of hyper mobility that can be draining. For me, it is a never ending cycle of going to physiotherapy and having everything put back in place. I leave feeling so much better. One wrong move. Or too much exercise. Or sleeping the wrong way. Or a slip on the ice. Then it’s waiting for physio. Get put back in place. Everything feels good. One wrong move. And we begin again. This cycle is painful in so many ways.

The pain of this is so real to me.

I am very flexible. But in hyper mobility that is a bad thing. It has been said only the cognitive and emotional flexibility we develop is truly a good thing. Through having to navigate a medical system that doesn’t understand and therefore is unable to help us manage our condition.

Brain Fog

Let’s talk about how our thoughts feel as though they are swimming in molasses. Or swirling in a cloud of cotton candy. Like the Lord poured in my brains with a teaspoon and somebody jostled His arm (Apple Dumpling Gang). When the brain is not braining. The struggle is so real.

Or teaching a lesson to a bunch of ladies at church. I often fake it until I remember or change the subject. How many of my friends can tell?😳😊

Brain fog affects more of us than just those with chronic illness. Between stress and medication and toxins. Many of us are suffering some level of brain fog. I forget what I am doing every time I get distracted. I forget what I am saying every time another thought comes along. I forget where I am driving on a regular basis. I cannot access parts of my brain that used to work. I used to be an avid speller. I got people’s names right. I remembered long passwords made up of random letters and numbers. I kept my family on track and on time. Those parts of my brain have fled or have taken refuge somewhere. I d0 not have access to them.

Brain fog is not just forgetfulness, confusion or feeling out of it. I often feel isolated from my reality. And parts of my personality. I feel detached. Like an outside observer. There are days when the effects of my brain fog are debilitating. And extremely frustrating. Until I can let that go. Which is sometimes easy. Wait! What was I talking about?

These symptoms are minimal to those that have not experienced them. I’ve been asked how my symptoms interfere with my daily activities. **Blank stare**. My symptoms ARE my daily activities. My life is planned around them. And I often half function in a hurried state when trying to get something accomplished. I see the amount of stuff to be done. And the number of spoons. The math doesn’t math. I feel similar to what a sloth must feel being chased by a cheetah. There was never a chance.

Hard Pills to Swallow

In addition, there are pills that come with hyper mobility, other than the actual pills. That are hard to take. These are the pills I find hard to swallow that come with any chronic condition:

  1. Giving up a career- I loved teaching piano. It was so hard to say good bye to my students. Packing up my piano supplies has been even harder. After five years I have started to pick away. But the grief surfaces and I set it aside again.
  2. Losing or changing relationships- I have amazing friends. Some that have lasted for years and changing lives. Other people have slipped away. They took more energy than I had or the other person couldn’t handle a different me. Chronic illness has changed me. The process has eroded me to my most essential parts. That means the way some relationships look is different now. Not the way I would have planned.
  3. Accepting the term chronic- It has taken time to come to terms with the fact that this condition is chronic. There is no cure. There is a lot I can do to manage it. But it will always be a part of me. I will always have pain. And then the pill of others not understanding. If they are not familiar with chronic, they might have a hard time accepting the limits of the medical world.
  4. Accepting physical limitations- I like to be strong. I used to do the P90X workouts. I had muscles I previously did not know existed. Now I need to bring my husband with me to pick up a chair. I need to sit often. My brain does not function as it should. I need reminders for everything. And then there are still times where something important falls through the cracks. And I need to acknowledge and accept. Then work within my capacity.
  5. Great desires to do what I used to do- I am so happy I can run. For years I just wanted to run again. And now I can! There are other movements or actions I am working towards. But I need to curb my expectations. Some days I get on the treadmill and I am so fast! Like a gazelle. An old one. With arthritis. Run over by a truck. Seven days ago.

Are there pills you find hard to swallow with chronic illness?

Puddle of Exhaustion

Which brings me to my next point. All of this is mentally and physically exhausting. The hyper mobility and resulting pain is tiring. The cycle of subluxations is tiring. Brain fog is tiring. We are just tired. I always feel like I’m about four days past my bedtime.

So many moments of my day, I wish there was a rope available to hang over. I have no more strength to hold my upper body and those muscles greatly desire to let go. So if you see me looking like the people in the picture, rope or no, now you know why. I’m just hung over. (I haven’t been pickled in decades)

One More

Proprioception. I have none. And from that point it gets worse as I get more tired. Actually, I can tell where I am in a space. But navigating within that space gets less easy as I get more tired. When I have subluxations, I am essentially crooked. So unless I am paying attention I walk crooked. I run into walls. I walk into people. I take a step and end up on the exact thing I was trying to avoid.

There is so much more to EDS and hyper mobility.

This post is getting too long and there is more about my EDS/ hyper mobility. So I will revisit this condition in the future. I hope this information is useful and that you can relate to parts, if not the whole condition. We all have parts that need healing.

Before we go I want to share some ways to handle any chronic issues.

Number one on the list as always is:

FOREST THERAPY!

Join me in the spring to see what forest therapy looks like. It is not just walking around in the forest. It is mindful and focused work. And then you will see the healing begin. I still struggle and suffer at times. But the forest brings me back to life. Back to joy.

If you have any questions feel free to email me on my How To Get in Touch page. I’d love to hear from you. Remember to subscribe and share with anyone you think could use a little forest therapy.

Once There Was a Snowman

Until that time. To help us navigate these terribly cold and icy days. Take some advice from this cute little snowman.

  1. Be a jolly, happy soul
  2. Spend time outdoors (unless it is even too cold for the snowmen)
  3. Stay COOL
  4. It’s okay to be bottom heavy
  5. Stay in the environment and energy that will help you avoid meltdowns
  6. Be well rounded
  7. Make others happy
  8. Remember life is short

You are strong, chronic comrade. You are not alone and you can do this. And if you feel broken…

Oh but the irony is, broken people are not fragile.

-Clinton Sammy Jr

Heartfelt Holidays: A Spoonie’s Joyful Celebration

pammunkholm

I have been posting my twelve days of Christmas according to a spoonie on my instagram page. For this late post on Christmas Eve I am sharing those posts here.

I looove stars. As a teenager, I would sit backwards on the seat of the car. With my back resting on the dash I could see the whole sky. When my boyfriend (now hubby) drove out on the highway. I wouldn’t do that now. But I still love getting out of the city and away from the lights to see the starlit sky. This eve marks the celebration of the birth of Jesus Christ. On this night we remember the star that heralded his birth. HE brings me more peace than all the other remedies combined. He is my High Priest of Good Things to Come. Whatever your faith. Whatever you celebrate, I with you the happiest of holidays.
What is the most important part of Christmas for you? Family? The meal? Gift giving? That is what we chronic comrades should focus on this year. The most important part for each of us, whatever that may be. We don’t get to take it all in and do it all the way we’d choose. But we can focus on one thing that is most important. Enjoy that with all your hearts.
Chronic comrades find ourselves explaining our choices often. Why we don’t work. Why we can’t try that exercise program. Why we can’t stand for long. You don’t have to give a fully prepared defense in response to every situation. When you have to decline an offer or invitation, often ‘No’ is all you have to say. Explanations are not mandatory.
I love Christmas movies. There’s so many new fun ones out there. But my favourites are the classics. White Christmas. Holiday Inn. Miracle on 34th Street. It’s a Wonderful Life. When I need a break from the chaos around me I will spend time in these heartwarming tales. We chronic comrades know that there are times we just have to rest. This can be terribly annoying when there are so many more fun things out there. And it seems like everyone else is out there enjoying themselves. You are not alone. There are others of us who just need to lay down and watch an old Christmas movie.
When I only eat the foods that don’t bother me, I have a very limited diet. My chronic comrades will understand. It can feel like we are missing out on comfort foods especially at this time of year. Find other things that bring you comfort. Like cozy sweaters! Or fuzzy blankets. Or the perfect smelling candle or diffuser blend. Or forest therapy! There are many things that can bring us comfort. Find yours.
This life presents us with different seasons of life. We can accept them and find peace or fight against them and find struggle. For my chronic comrades this is a season of rest. Not your season to impress. Your home and meal should look different from others’. So don’t compare to those in a different season. Use some of your movement time to get outside and breathe some fresh air for your forest therapy. But be careful in Saskatoon, I fell on the ice and now I am Humpty Dumpty. Waiting for someone to put me together again.
Music sets a mood. What mood do you want for your day? I have multiple Christmas playlists. A joyful Christmas. A playful Christmas. A traditional Christmas. Don’t say you aren’t a Christmas music person until you have tried more than Mariah and Justin. When you take time out to rest chronic comrades, put on something relaxing. It will help to settle any upset nerves. Enjoy your down time. Don’t sit there worrying about what isn’t getting done. I’ll share with you my favourite mantra for when things are going sideways. {{maybe things are going perfectly}} Maybe it doesn’t matter if we forgot to make the mashed potatoes. Or if the dog gets into the turkey. Or dinner is going to be two hours late. Sit down, choose some calming music and breathe.
Sing it with me and the gospel choir. Just go lie down. When your body needs something, listen to it. Take care of your body and it will take care of you. It’s like preparing for a marathon if you have multiple gatherings. Stay hydrated. Make sure and be well rested. Eat nourishing foods. And when your body says it’s time to stop. Listen! I think of big family dinners with my Grandma McDonald. She knew how to do it all. Perhaps it’s just my young mind not remembering correctly but I recall Grandma enjoying it all. She never sat down until it was all over and cleaned up. And she still had energy left to watch a show or sing a song. I would love to be the woman who can do it all. And still have energy left over. But I am not. So as a reminder to me and my chronic comrades. Just go lie down when your body needs that.
I love the image of a perfectly clean living room with only the tree to light it on Christmas morning. All the gifts under the tree would be perfectly wrapped. The meal on standby. Way too many treats and the baking that I will finally allow my family to start eating. Family preparing to spend the day together for fun and visiting. This will not all be my reality this year. But there will be another reality that will be perfect for me. IF I choose to see it that way. If you also love all the parts of that Christmas morning image, choose one or two parts you can manage. Do not wear yourself out trying to do it all. My chronic comrades, I hope you have loving people around you. They would rather have you in one piece than a clean house and perfectly crafted meal. Take time for what heals you so you can take care of others.
Choose your time out and about wisely my chronic comrades. I give you permission to pick the most important and leave out the rest. Attend the gatherings that lift you up. You have enough that drags you down. Spend time with your most uplifting friends. Maybe you can get a group together for some forest therapy to deal with the stress of the holidays.
I have never been good at hugging. I didn’t think it was in my DNA. Brent says I hug like a tree. But I am learning how important it is to hug the ones we love. There is something about getting heart to heart that promotes a deeper love and compassion. My chronic comrades, let’s thrive through this Christmas season. Take some time to get heart to heart with the ones who lift you up. Step outside for some forest therapy. Even if it’s just for a moment in the middle of a gathering, breathe the crisp air.
Spoonies. When you know, you know. Forest therapy can help my chronic comrades. If you’d like to learn more about what it means to be a spoonie. Or how to use forest therapy check out my other posts.

Merry Christmas and take care, my friends!

The Spoon Theory Explained: Managing Energy Wisely

pammunkholm

The first fall of snow is not only an event, it is a magical event. You go to bed in one kind of world and wake up in another quite different, and if this is not enchantment, then where is it to be found?

-JB Priestly

We are not all so thrilled to see the snow falling today in our area. But I realized something important. When I looked at my grandson’s eyes, so big and shiny as he looked out the window. Pointing and gasping as though we put it there just for him. There is a way to see this new world as magical and beautiful.

Even for those of us who are suffering as the weather shifts. I mentioned the spoon theory in an earlier post. I want to go back over the basics of it as we commence today’s post.

The spoon theory is an analogy. People with chronic illness often use it to explain how their daily energy is limited. Spoons in this analogy represent units of energy. We have a finite number of spoons for each day. We must carefully choose where spoons are ‘spent’. This requires effort. Even the smallest daily tasks can consume a lot of your day’s energy. Tasks like preparing and eating food or attending an event are examples. The need to thoughtfully consider how we manage this is great.

For those who do not suffer in this way, the following infographic will prove most beneficial.

Something that I will acknowledge takes multiple spoons is showering. I share with you my guide:

How to Shower as a Spoonie

  1. gather your supplies and your resolve, we can do this
  2. start shower, warm, but not too warm, but definitely not too cold, that would be disastrous
  3. enter shower, step carefully, we don’t need any new damage
  4. use shampoo (the right one, nobody knows which one that is, but definitely don’t use something that has chemicals, newsflash, they all do)
  5. when rinsing out the shampoo you will likely need to sit down and rest for a time, perhaps have a snooze
  6. get back up, God speed, all of the blood will now be rapidly drained from your brain to your lower extremities leaving you sluggish and dizzy
  7. apply conditioner as you simultaneously embrace the shower wall for support
  8. briefly consider just calling this good
  9. rally 👏👏👏
  10. apply soap to areas easy to reach and just let it slide to the parts you can’t
  11. while leaning ever more excessively on the wall rinse what conditioner you can
  12. exit shower and haphazardly dry off
  13. feel rotten and go to bed with your wet towel
  14. cancel the plans you had because now you have been rendered useless
  15. see? we’ve done it! without a hitch. beautifully executed

Have you ever gotten to the end of your spoons before you got to the end of your day? I often have. What is to be done in such a case? Can you restock your spoon supply? Sometimes the answer is no and the best thing to do is to go to bed and try again tomorrow. And that’s okay!

At times I am getting to the end of my spoons and I can see the day stretching out. I have found a few things that help to restock SOME of my spoons. Or at least it is helping me use what spoons I have left wisely.

Restocking your Spoons

Turning off and tuning out has been a life saver. I put my phone on airplane mode and I will go to a dark and quiet space. I can breathe deep, meditate and just BE without all the distractions.

Comforting food or drink. We have to be careful when choosing foods. I suggest finding one to have on hand for emergencies. Or maybe you are a tea person. A tea break is a great way to slow down.

At times exercise is the right call; though only to the degree that your body will allow. Maybe a stretch is right for some people?

There is nothing wrong with a nap. If that is what your body needs to regenerate then nap away. No shame!

And then there’s my favorite. A bath. I love the soothing warmth and having my body suspended where I don’t have to hold it together.

If you wonder why you are so tired, why we start each day with so few spoons. Consider the fact that our sleep is not the same quality and effectiveness as those without chronic illness. It’s unfortunate but true.

Recognize your limits. Pay attention to them. There is always much to do in a day but make sure you don’t end up like this Little Miss.

Pace yourself. Rest. Take breaks. We have to practice being still. And feeling okay with being still. Often it goes against ever part of our being. But maybe this is how we survive.

And on the days we are not okay?

You are worthy of so many things. Your illness and the limitations it causes do not minimize your worth. At all. And yet. A word of warning, the battle raging in your body is helping you become the person you are becoming. For better or for worse. Choose to make it for the better.

My symptoms have been varied and particularly pesky this month, this year. I am inspired by this Latin phrase. alis volat propriis. Translation: ‘she flies with her own wings’. We feel weak but we are truly strong. We often need to figure things out in our own way and timing. We fall. But still we rise.

To close, I’d like to give our non-spoonie readers another guide. This guide will help you support any of your spoonie friends and family.

Spoonie Translator

In response to “how are you?” we say, “fine thanks!”

This is not even remotely true, don’t trust us.

Translation: I am just barely holding things together but I like to try to blend in

When we say I have a doctor’s appointment coming up

Sounds like a bit of factual information, no big deal

In reality we are worried about it and might need support during &/or after

I wish I were able to work

And you think, “sure but isn’t it nice to stay home all day?”

We really would rather work, join the rest of the world, and make our mark, plus income is always nice

I am tired

“Me too” sounds like a reasonable response but that would be comparing apples and chronic fatigue

Translation: I need to quit now. I probably should have quit a while ago.

I wish I didn’t have… fill in the blank

Do you sometimes think, why do you have to talk about it so much?

Translation: I am devastated by the physical, mental, emotional, financial, employment, etc. changes my illness has brought.

Actual footage of me holding things together

Sometimes we just need to laugh. It’s a good coping mechanism. I hope I have brought a brightness and laugh to your day. Maybe a connection where you think, me too! Let me know in the comments.

How wonderful it is that we laugh because our bodies cannot contain the joy.

-unknown

If you’re enjoying the blog, hit subscribe so you never miss a post. I’d love if you’d share this post with anyone you think it would help. Take care my friends.

Living with ME/CFS: A Journey Through Chronic Fatigue

pammunkholm

So, if you are too tired to speak, sit next to me because I, too, am fluent in silence. – R. Arnold

What is your toxic trait? I have many. One of mine is pushing through when my body is exhausted and needs to stop.

{MYALGIC ENCEPHALOMYELITIS}

I was diagnosed with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). Mya what?!? I like this infographic for breaking it down. It is so much more than being tired!

At the time of my diagnosis I wasn’t suffering many of the symptoms. It wasn’t my first concern. I was just trying to get my floppy joints to hold still. ME didn’t seem like a big deal. So what if I’d be tired. I just wanted the pain to stop.

But now, years later, I can see what ME has done and is doing to my body. Pushing through is never the right answer with ME/CFS. And having it?… actually is a big deal. I need to be aware of how it affects my body and what I can do to manage the symptoms.

If you’d like to know what it’s like to have ME/CFS follow these 6 simple steps:

  • First you’ll need to fast for 24 hours
  • Also stay awake for those 24 hours
  • Every time you stand up, spin around 5 times really fast
  • Throw yourself down the stairs 5 times in a row
  • Run 10 miles
  • And continue to try to live a normal life
  • this list is brought to you by sunshineandspoons.com

Accurate!

{SYMPTOMS}

The actual list of ME/CFS symptoms includes post exertional malaise. It seems obvious. You get tired after you perform an activity. Everybody gets that. But with ME there is a disproportionate amount of exhaustion for the type and length of activity. For example, showering is so tiring.

What is it? Arms up? Standing in one spot? I don’t know for sure but I need to rest after a shower. Sometimes in the middle of a shower.

Next on my list of symptoms is muscle pain and weakness. I need to exercise to keep my muscles strong enough to hold me together. When we leave the gym I have so much muscle weakness. I have trouble getting to the car without willing my body to keep moving. I’m daily tempted to ask my hubby for a piggyback. I feel the lactic acid running through my veins. Like I just ran a marathon and then sat down for a half hour. Then stood up and tried to walk. Can you feel the Oof?

And my favourite (and most embarrassing) symptom. Cognitive impairment. Brain fog. Oh the brain fog!

This is my life now. Anyone I have had a conversation with in the past couple of years can verify.

The list goes on. Sleep problems. Hypersensitivity to light and stimuli. Flu like symptoms, it has been compared to feeling poisoned. Shortness of breath. Difficulty swallowing and chewing. Sweating. Dizziness. Muscle pain, twitching and uncontrollable spasms. Poor tolerance for hot and cold. Visual disturbances (waves or blurred vision). Inconsistent central nervous system operation. Word finding difficulty. Disjointed speech. Difficulty comprehending text. Difficulty with processing and concentration. Feet burning. Poor digestion. I only list here the symptoms I have experienced. The list goes on for others who suffer ME. As I reread this list, it sounds like the side effects of a drug that’s not worth taking!

Just like so many syndromes in our world the severity of ME each person experiences is on a spectrum. Some people need to spend their lives in bed. Often separated from life to handle the pain that accompanies ME caused by any exertion. My heart goes out to those who suffer in such a way.

I was there.

{{MY STORY}}

In 2020 I hit a breaking point. But not for the same reason many other people did.

My body would no longer work the way it always had. Pushing through wasn’t a viable option. The wall of exhaustion was sudden and extreme. It was physical, mental and emotional. I had to go to bed and I didn’t know when I’d be strong enough to leave it again.

No 20 minute nap was going to fix this.

I had to stop working. I eventually (tearfully) decided to close my business. I couldn’t make my own meals. I didn’t want to eat anything anyway. I didn’t feel like sleeping but I was SO TIRED. My brain was spinning and all my nerves were ready to zap if not treated with the utmost respect.

Most heart wrenching of all. I had to leave my family. I had to go where it was quiet and still. There is nothing quiet and still about three teenage/ young adult sons and a farm to run.

I needed to be warm. And hushed. I needed to focus on me. Just me.

It. Took. Months. Of being still.

More months of learning to slowly start life again. And then starting over again but with boundaries.

More months of realizing this is my life now. I had expected to put my life on pause for a short time. And to pick up where I left off as soon as I was “better”. But you can’t live on pause. And there was no “better” forthcoming.

Not everyone who suffers ME will experience the same results as my story. Even if they do exactly what I did, outcomes differ. You can do everything right and still suffer the symptoms. I managed to break free from chronic fatigue’s strangle hold. By no small miracle.

During those first months my brain just wanted to stop but I had so many daily worries. I couldn’t handle the thought of letting them go. And there was nothing to physically be done in my state to take care of them.

So my mom would come into my room at her house. She would sit at the end of my bed and write all of my worries down.

She’d help me sort out what needed to be taken care of and who should do it.

Over time I started physically building myself back up so I would be strong enough to go home. I’d walk around my parents house for a minute. Then two. Then three. Everything had to be such a slow build. Or I’d start from square one again.

I couldn’t handle any stress. Try avoiding that in this day and age! It was and is an ongoing battle to recognize and alleviate those triggers.

This all seems a lifetime ago. Today I live an almost normal life. Normal for me I should say. I still can’t work. I have to pay attention to how I am feeling at all times. I need to make sure I am not overdoing anything. I listen to my intuition when I take things on or when I choose to politely decline. Sometimes I get it right and sometimes I have to go to bed.

{OVERCOME}

I don’t like being known as the woman who is always exhausted. Pushing through and setting off flares in my body. I don’t want to be remembered for just barely holding it together.

I want to be remembered as joyful and relaxed. When I rest I can let it restore me not frustrate me. I want to be remembered for loving fiercely and for being a woman who knows her worth and her strength including her limitations. Living in the mess and magic of this life. I don’t want to take things too seriously!

What can you do if you suffer some of the same symptoms? What are the treatment options? Doctors will tell you there is nothing they can do. While this might be true, there is plenty that you can do.

{TREATMENT}

Forest bathing is my number one recommendation. Get into nature and find comfort and healing in its embrace. As the days get colder just add more layers. If you need help to get the greatest benefits out of the forest head over to my contacts page. We can go together and I can show you how.

Do not find yourself guilty of my toxic trait. Do not push through. Just keep swimming is not always the right advice especially not for chronic pain sufferers. Just keep swimming till you have a flare. Just keep swimming till you are in so much pain you can hardly move. Just keep swimming will put you in bed. Your best option might be to just stop swimming and respect your limitations. And take care of yourself accordingly.

Here are some other things you can do to treat ME/CFS. Each of the ideas will put a drop in your bucket. The infographic mentions Fibromyalgia too. It is very common to have more than one chronic disease to manage. It is not like Pokemon. You definitely don’t want to catch them all.

Do not let your bucket run dry! Keep a daily schedule to stay on top of these treatments and ways of life.

Other treatments include pharmacological (for sleep, for twitches and spasms, for depression that often accompanies chronic illness, muscle relaxants (not me, my muscles are stretchy enough on their own), or medical marijuana for pain).

More treatments for pain include massage, physiotherapy, chiropractor, meditation and relaxation, heat and cold packs.

Sleep. Set up a soothing bedtime routine and stick to a regular sleep schedule. I am working on practicing what I preach in this area.

Other useful tools: Add salt to your water for extra hydration. Compression socks. Breathwork. Clean diet. Memory aids. Ear plugs and eye masks. Ask what your body needs and follow its answers.

{TO THOSE WHO SUFFER}

I end with this justifying quote for all those who suffer from ME/CFS. Dr. Clare Taylor said,

I maintain the sickest patients I have looked after are ME patients. They suffer. Every single day. For years. And get told to try harder. One day it will be accepted for what it is.

I don’t know this doctor. But here, here! Vindication for all who suffer.

If this sounds familiar to you, and you want to discuss more than what I cover on the blog, reach out to me on my contacts page. Tell me your story. There is healing in just that.

And she stopped… and she heard what the trees said to her, and she sat there for hours not wanting to leave. For the forest said nothing, it just let her breathe. -Becky Hemsley

Top 10 Inappropriate Things to Say to Someone with Chronic Pain

pammunkholm

I have been doing research and reading on chronic pain as it relates to forest therapy. As I’ve done so I have come to the conclusion that I am not the only one to have struggled in the past with things people say that, while well meaning (in most cases) can come off as offensive to someone struggling to just get through a day.

So in honour of those who need support, not to be treated as a suggestion box, here is my top ten list of inappropriate things to say to a person with chronic pain.

#1 Oh ya I have _______ too.

For me it’s sore muscles. Other people get sore muscles too. I don’t want to take that away from anyone. Pain is pain. But when I’m talking about my muscles not doing what they need to do it is despite all of my effort over years. It is a different story than someone who has a sore back because they slept on it wrong or need to go to the chiropractor. There is an answer for the where and why of their pain. And hopefully a treatment option. If not, you are welcome to join team Don’t Tell Me You Have It Too. For those searching for the right way to converse, think of waking up everyday for the rest of your life in pain. Then enter the conversation with humility and grace instead of comparison and minimizing what we are going through.

#2 You’re too young to be dealing with ______

And yet here we are. So do you not believe me, or…? I agree. I am not the age of someone who should be struggling with physical technical difficulties. And yet this is the body I have and I have taken really good care of it. And it’s letting me down. Please support me by recognizing that it is happening despite the odds and help me find ways to endure and enjoy life.

#3 You don’t look sick.

While that seems like a good thing it can be really difficult to navigate a day while in pain and nobody knows. Picture going to the grocery store with a broken arm but there’s no cast on it. It looks fine. By all appearances one should be able to handle a trip to the store. And yet the pain you are experiencing is almost unbearable at times. I have had to sit in the middle of a store because my back was telling me it was done by tweaking and spasms. I’ve stood in a line up to get my prescription filled and almost thrown up in pain. A more empathic response to someone sharing their pain with you is to be curious. Ask supportive questions instead of making a statement of fact that is hard to handle on a day to day basis.

#4 Have you tried _______?

Yes. The answer is yes. Someone that has struggled with their health for any amount of time has tried that. If there is a reason they are not willing to try ______ it’s time to back off and listen. They know their body. They know their history. They know what a setback from trying a suggestion looks like. For a more enjoyable conversation for us both, let’s keep our suggestions to ourselves unless they are requested. Assume I am doing the very best I can and that I will be guided to what is right for me. The odd suggestion is acceptable as long as there will be no argument over whether I should try it or not. That is my call to make, end of story.

#5 I know someone who had that and they just had to _______ and now they’re better

I am super happy for them. Many autoimmune and nerve issues will affect people extraordinarily different. How it manifests in your distant relative that just had to drink a concoction everyday is not the same way it manifests in me. Nor will it be “fixed” in the same way. My condition is chronic. That means it will still be here tomorrow even if I drink Great Aunt Margaret’s concoction. If you think you know someone with the same thing don’t tell me how they got better and so can I. Listen to my struggle and empathize. Don’t try to manage my disease, that’s my job.

#6 You seemed fine yesterday.

And for that I am paying dearly today. The way my body works is that it will not give me any signals when I need to stop an activity. It will carry on and the next day I will wish I were dead. I am willing to make a sacrifice of paying dearly for the right things. I choose carefully. Time with my grandson. Time spent with friends. Time in nature. I never know what will push me over my limits but if it is for the right reason I am willing to sacrifice. To put aside my health for tomorrow so I can play today is important to me. Instead of questioning my story thank me for the time I am spending with you and appreciate that it might mean I am in bed for the day tomorrow.

#7 Must be nice to stay home and not work

Nope! Big hard nope on that one. Most people with chronic pain have a desire to be out in the world. Working on career or family. I am grateful my family raising is pretty well over. It would be terribly difficult to do this with little kids. I was just starting a career as a piano teacher with enough students to be almost full time when my body started giving out on me. Our lives were going the direction we had been planning and working for all of our married lives. And then it all came to a crashing halt. Plans had to change. Not in the direction we would have chosen. So while I am home and resting I am thinking of all the jobs I would have liked to try. And how much easier it would be to have a two income household instead of one. I feel guilty for the money that goes to my health and wellness. I think most chronic pain sufferers would agree that having the choice to work taken away is not fun in any way. Just avoid this one altogether.

#8 Why are you on so many medications? They are so bad for you!

It has been hell trying to find the correct meds and dosage without side effects that make them not worth it. I am also learning how the stress of being in pain takes its toll on a person physically and mentally. One cannot just grit their teeth and bear it without a cost. Medication is a very personal choice. It is a long and hard road to get what you need. It is hard to be on a controlled substance. I have been questioned about over medicating until the pharmacy realized it was a mistake on their end not mine. It is hard to be on the verge of running out and too tired and in too much pain to make the appointment, go to the appointment, and get the meds. Please don’t question my choice because you have not travelled the road I have travelled. I hope to not need medication someday. But today it is saving me. That means they are bad for you! But not for me.

#9 You’re still dealing with that?

Yes. I have been dealing with it for over a decade. If I get better I will be shouting it from the rooftops and you will know. Until then assume that my chronic condition is still being chronic-y. I have heard our brains want everything to be resolved. We want there to be an answer for everything. For all problems to conclude. But that is seldom the case. Recognize that when you are uncomfortable with me still being “sick”, it is your brain wanting things to resolve. I would like it to resolve even more than you. So being reminded that things are still wrong isn’t helpful. Instead ask me how things are progressing or if there have been any new developments. There are always changes, sometimes positive.

(and speaking of being positive) #10 Inappropriate thing to say to someone with chronic pain: Just stay positive

My life got to a very dark and negative place. If someone had approached me at that time and told me to stay positive I would have slugged them. I know that staying positive has it’s place in healing. Yet there is also healing in the struggle and in feeling all the feelings that come with it. There is a time for feeling hurt at being misunderstood and for feeling too tired to do this anymore. As long as you just visit that neighbourhood and don’t move in. Feel the negative parts. And then return to the light of hope. Hope for good days. Hope for understanding doctors and team members. Hope taking us to joy in this journey.

It can be really hard to be a support person or friend to someone who is struggling with chronic illness/ pain. You likely have your own list of phrases you don’t like to hear. I don’t expect everyone to walk on eggshells when it comes to talking to me. I fully expect to hear these in the future and I will do my best to recognize where you are coming from. But for those who know someone with chronic pain, maybe this will benefit you in some way. And if you are a chronic pain sufferer, maybe this puts into words why some phrases can be hurtful even when they are presented as showing concern.

This is anything but a comprehensive list. What would you add?

While my condition is chronic, the symptoms are suspended and alleviated in the forest. I can search into my body to know what it needs and how to respond to those needs. I can connect to the earth and it’s rich aromas and textures and melodies. I can let go of any of these phrases I may have heard recently because when I am in harmony with nature I feel more in harmony with myself. Head over to my contact page to book a forest therapy walk or if you have any questions for me.

Take care my friends.

Overcoming Chronic Dis-ease in Modern Life

pammunkholm

I attended a family reunion this weekend. What a wonderful and terribly stressful event those are! It was lovely.

I looked around at my mom, her siblings and cousins and all their spouses. They are in or around their 70s. Many of them are starting to have symptoms of old age or chronic conditions. Their grandparents before them lived to ripe old ages of 98 and 94. Their parents lived to reasonably old ages. And they are dealing with chronic health issues in their 70s. And even more concerning is that their children are also starting to deal with different but serious health conditions in their 40s.

What is happening? I would like to see your thoughts. Feel free to comment.

Here is my theory. Our world has changed drastically in the last few generations. The food we put in our bodies is further from the earth and more processed. The information we receive is constant and confusing. The effort it takes to be physically active can be too demanding after an already full day and exercise is less of a priority. I have already mentioned the distance we have put between ourselves and the earth, the lack of grounding we experience. And stress. I feel we have been hoodwinked into thinking this modern life is so much better than days gone by.

My number one caution to those who have not yet started experiencing those effects of this world is to lower your stress level!!!

I suggest this to my family and friends in their 20s and 30s and they scoff. If only we could! No seriously, do everything you can to lower your stress levels. Every person can find something that works for them. It is not about pretending things are ok or getting rid of our children who are the cause of the stress. The answer is to find coping strategies that work for you.

Maybe that’s hiding in the bathroom and doing breathing exercises for 30 seconds every few hours. Maybe you have a monthly date with a massage therapist. Maybe you have a time of the week that is just yours and you can go for a walk in nature! The options are endless.

Don’t scoff and picture your life getting calmer when your children are older. I noticed something at this family reunion of 60-some people. Most of them from one set of (my generation’s) grandparents.

I had children when I was young. I was so busy with my three boys for what seemed an eternity, And then they grew up and I relaxed as I watched my siblings and cousins struggle with their babies and toddlers. And I laughed and laughed and laughed.

Now I see them sitting and relaxing with their young teens and young adults and I am running around after a grandchild. And I see my older cousins that are also at this stage who have had time to relax and watch and laugh and now they are running around helping with their grand littles too. It all goes around.

I see the changing of the guard. My generation is starting to care for the older generation in small and simple ways, It all goes around. There are times of hard and times of growth. I see the importance of it all.

How do we find a way to bring that stress level down in all stages of life? Maybe you can’t get it to base level when you are raising your babies. But you can likely bring it down from wherever it now resides.

I don’t have the answers but I do want to start the conversation. Is our generation the one to say, things need to change? How do they need to change? Do we adopt a Mediterranean lifestyle? It seems to work for them!

What can we adjust in our individual lives and as a community that will stop the progression of dis-ease that is happening to us and those we love? Dis-ease if you divide the word like so, is the hard truth. Many of us experience chronic physical, mental, emotional dis ease. We are never at ease. But constantly and drainingly the opposite. This can’t be the only way!

It might take something unheard of. Something that seems too hard. IMHO there are so many broken systems. Which ones need fixing so that our kids and grandkids don’t have it worse? Which ones are in your sphere of action? Will generations after be able to look back and see this moment when the tides shifted in their favour because of what we were willing to do. But what is it? What will shift us from dis- ease to a life- not one that is easy but one where you can be at ease while you deal with the vicissitudes of life.

In the book, The Healing Magic of Forest Bathing, author, Julia Plevin says, “As a society, Americans have reached the impacts of being disconnected from nature and are suffering as a result. Chronic illness including cancer, depression, anxiety, exhaustion, and ADD are widespread and on the rise, These issues affect adults and children alike.”

So what should we do about it? I am open to suggestion. One thing that resonates with me is to get back in touch with the earth and what she has to offer. In any way and every day that you can.

Dr Qing Lee, the world’s foremost expert in forest medicine, wrote in his book The Japanese Art and Science of Shinrin- Yoku: Forest Bathing, “Forest medicine is a new medical science that could let you know how to be more active. More relaxed. And healthier with reduced stress and reduced risk of life style related disease and cancer by visiting forests”.

I don’t think forests hold all the answers for how to live in this world. But I know that being in the forest clears out the cobwebs and I can focus again on the needs of my day. If you’d like to experience what forest bathing has to offer, head over to my contact page and let me know how I can help.

Take care of each other out there my sweet friends.