Tag: Myalgic Encephalomyelitis

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,

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

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. 😉

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!