Tag: wellness

WOODNOTE- a natural, musical sound, like birdsong in a forest

In My Hypermobility Era

I will get back to my summer adventures in the forest next week. The last few weeks have been tough. So today I am sharing more about the battle I am facing with my joints. I try not to speak about it in negative terms as a general rule. But today.

Er. Ma. Gersh!

I have started seeing my physiotherapist on a monthly basis. Which is more often than I see some of my kids. And they live with me! I have felt so close to getting on top of the subluxations. For so long!

And yet, the battle continues. When the joint slips farther than it should, it often gets stuck. This has a compounding effect. Because the joint that was injured primarily will no longer function correctly. This results in adjacent muscles having to pick up the slack. They will start to be overused. In EDS patients, especially, this is unfortunate. Because overuse of any body part, can result in more joints experiencing a subluxation.

I’m a Zebra; The Ehlers Danlos Phenomenon

While I have not been officially diagnosed with Ehlers-Danlos Syndrome. My hypermobility condition is very similar and I have many of the same symptoms. According to Dr. Alan Spanos,” If a patient thinks they have EDS, they are usually right.” Diagnosis parameters have changed a few times. Maybe I will have EDS when it changes next.

Pickles are Great; Until You’re in One

The last time I had an adjustment, my physio and I were working from a different angle. Instead of treating all the joints from the bottom, up. Like we have been doing lately. We tried treating what we thought was the primary injury. Caused by pulling a wagon with my 3 year old grandson in it. That bit of a twist, we thought, must be the first and then other joints follow. So we treated my upper back first.

When I left the appointment everything felt good. But over the next two days, I could tell, my body was not settling correctly. I had two trips planned and another appointment did not fit before I had to leave. That means I have been climbing mountains on one trip. And supervising a group of 40-some teenage girls at camp for the other, all with multiple subluxations and resulting pain. This is my life with Hypermobility.

What in the District One of Hunger Games IS THIS?

The diagnosis process for someone with hypermobility or EDS can be terribly frustrating. I would go to my doctor. She would run tests. She sent me to specialists. For years, every test came back normal. This should be a good thing. But when you feel something is wrong and you are being told, “All is well!”, depression and other mental illness creep in. The years of being left untreated and without hope, caused further problems.

Doctors started to talk more about treating my mental conditions and the physical symptoms were ignored. I started to think this was all in my head. If I just ignore it, I should be able to live a normal life. I minimized my pain to appear normal. I didn’t want to be a complainer anymore. I got really good at acting. But the pain remained and was causing more and more problems.

Your brain wasn’t made for this much noise. Grow a garden, touch some dirt.

-@twopawsfarmhouse

The Not-So-Subtle Art of Burnout

Shortly thereafter, I entered the phase of chronic illness burnout. I lost hope of ever finding healing. I didn’t want to go through the appointments and treatments. I was lost in my pain and grief at the life I was losing. And to make matters worse, those who were supposed to help me, didn’t believe me. The chronic pain was relentless and I felt too weak to do anything about it.

I started this stage of my life, with the perspective that chronic pain wouldn’t stop me. I wanted to work and play and live. I’d seen multiple stories of people who lost limbs or faced cancer. Against all odds, they went on to run marathons or achieve higher levels of scholastic learning. And yet, here I was with my wobbly joints and I couldn’t run to the living room. I had to adjust my expectations. And my life. To fit what was happening. Not what I hoped would happen.

When you experience continual physical symptoms that impact your ability to function in life. Your mental health is going to be affected, at times. The mentality of, ‘don’t let your chronic pain get to you’ is dangerous. I am learning instead to accept what is and make a game plan from there. Do not shame and blame yourself for having something you cannot control.

Decoding the Language of Symptoms

Craniocervical instability is a constant for me this month. Heralding a near perpetual headache that feels like my head is too heavy for my neck to hold. At other times, it is more of a pressure headache. Caused by an impairment of CFS flow. When I yawn or sneeze I think my head will detach. Other people who suffer in the same way can have brain stem compression. Symptoms include: tachycardia, heat intolerance, fainting, extreme thirst and chronic fatigue.

I often experience pain in the joints where the ribs meet the breastbone. Known as costochondritis. Inflammation builds there when the joints of the vertebrae meeting the spine have a subluxation. This feels like tightness in my chest. When I sit upright, the pain is excruciating. And certain movements can jar that vertebrae and cause pain, making it harder to act normal. I can’t sleep on my side. And my running has been put on hold. I have to walk instead😠 .

I have ongoing disc problems. Discs are supposed to help cushion and support the spine. In EDSers these discs are more rigid than usual. When these discs are damaged, pain will radiate down the legs and into the arms. In the past I have suffered from leaking or ruptured discs leading to pinched nerves. At this stage I am grateful to have built up enough muscles to protect those damaged spots.

There are 360 joints in the human body. How many do you have out today? I can count over 20 spots. Dislocations must be terribly painful. I have never experienced one. But I know subluxations. And they are agonizing.

Eye-Opening Symptoms You Can’t Ignore!

Pain makes sleep hard to smoke out. Add to that the fact, as an EDS or hypermobile patient you also make extra adrenaline. Bully for you! This overstimulating effect makes sleep even more arduous. The body continues to make extra adrenaline overnight leaving a body unrefreshed after a shallow sleep. This added endowment of adrenaline also brings with it, anxiety, abnormal nervousness and panic attacks.

After all this, it can be hard not to feel bitter when you see others out and accomplishing. Especially when it is something you would have liked to accomplish, but now you are not able.

And more especially when people say, you can do it anyway! No. I can’t.

I used to play the piano. I enjoyed practicing big, loud songs that used all my fingers and arm strength. I could make the floors of the house shake. I no longer play at all. Any use of my fingers results in pain in my hands, then arms, then shoulders, then back. I have not been able to get on top of this pain. It breaks my heart when I hear someone play the songs I used to play.

The lonliest moment in someone’s life is when they are watching their whole world fall apart, and all they can do is stare blankly.

-F Scott Fitzgerald

Writing is painful and often illegible due to loose finger and hand joints. After years of pain, my hands tremble and shake.

Here is where I make my justification for my crooked teeth. Dental and oral issues are common in EDSers. Teeth are prone to fracture from minor traumas. Gum fragility has led to bleeding gums. In recent years I have struggled with the joint of the jaw. Chewing too much or taking too big of a bite has led to subluxations. EDS also affects speech and swallowing muscles.

The brain fog is so real, I can’t even. I will forget things, feel confusion, have trouble processing information. There are times when it is worse. But there are no times when it is better. I feel like an inside out version of myself. I can still remember who I was, but I can’t seem to bring her back.

Heed the Symptoms or Suffer the Consequences

A crucial reminder here that doing your best does not mean pushing past all your limits. Ignoring your body’s signals. And using every minute of every day to be productive. Doing your best is what you can do within the boundaries of what your body needs from you. Listening to its signals. Without harming your mental and physical health. Not what you can accomplish when you disregard it.

Most days, I pattern my life around my symptoms. I often experience debilitating fatigue. Especially when I forget the pattern. It takes days, not hours, to catch up. I want to approach each day mindful of the energy I have and where I will need it most. I also have to walk the tight rope of sleep and exercise. Laying down and using functional movement. Too much or too little of these will throw me into a surging mudslide. That I do not see coming. And once it starts, there is no option but to ride it out.

I hoped to age like fine wine but it appears that with EDS I will relate more to an aged avocado.

Muscle spasms that make me twitch and pop are a common symptom these days. Probably due to overuse of muscles all day long. I lie down and it can look like I have popcorn popping in my torso.

I finally found my rhythm when I realized even the steps backward were part of the dance.

-unknown

All This is a Fine How-Do-You-Do; Now What?

With all this going on. I am here to tell you today and everyday, there is beauty in this life. Life is worth living. For the joy, and the pain. When you believe this and start to treat yourself as a whole. Your life will be forever changed. Mine was.

I don't ever crave extraordinary moments anymore.
Just small, gentle hums of beauty streaming from below, above and beyond simply from paying attention. 
Sound. Light. Shadow. Art. Warmth. The night. The morning. 
Dreams that are not far away but exist right here-
Already in my days, hands, and heart.
-Victoria Erikson, Rhythms and Roads 

Holistic Patient Care Approach

Holistic health focuses on mind, body and spirit as one unit. Recognizing the cycles. Honouring womanhood. Instead of silencing symptoms, we seek to understand the root cause. And then offer natural, supportive remedies. Like herbs, nutrition, energy work, and somatic practices. Empowering women to trust their intuition, tune into the body, and reclaim health in a way that’s aligned and sustainable. It is a collaboration with the body’s natural intelligence.

Have you heard of the blue mind theory? “It is the science that shows that being in, near or on the water allows you to fall into a meditative state. Increasing happiness. Lowering cortisol levels. And promoting inner peace for your overall well-being.” teaandtranquil.com

Seemingly Trivial Exercises; Substantial Results

Mindfully Natural Ways to Cope

• Mindful listening- try to discern what the birds are saying
• Mindful awareness- balance stones on one another
• Mindful observation- forage local plants
• Mindful immersion- forest art
• Mindful appreciation- go on a wonder filled walk
• Mindful service- tend to your garden of kindness

Healing Meditations

• Visualization- forming a mental image, guided or self
• Walking- find a gentle, flowing pace
• Mindfulness- focusing on awareness
• Mantra- repeating positive words of affirmation
• Sound healing- uses vibrations
• Progressive relaxation- scanning the body to reduce tension
• Focused breathing- focusing on the breath to ease stress

Steps To An Empathy Walk

• Find an example of a struggle in nature
• Find something that brings up feelings of gratitude in you
• Find an example of unity in diversity
• Find an example of support and kindness in nature
• Find an example of something that is healing for you
• Share all this with someone who cares

Following are three questions that you can ask yourself every morning to design your day according to your current needs. Reminding you to start with intention instead of output.

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

I find it more pleasant to start the day with clarity and softness. Making it more likely to move through the day as my highest self.

I love my natural remedies. Foremost among them being forest therapy. For well being. For healing. For finding yourself. There are so many ways and reasons to forest bathe. Join me on a forest walk by contacting me on my How To Get in Touch page.

In failure, may we find dignity. In loss, may we find wisdom. In pain may we find growth. May our souls rise. Ever rise.

-Phil Tucker, The White Song

Keep rising my friends!

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.

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.

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!

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:

• 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