WOODNOTE- a natural, musical sound, like birdsong in a forest
In My Hypermobility Era
I will get back to my summer adventures in the forest next week. The last few weeks have been tough. So today I am sharing more about the battle I am facing with my joints. I try not to speak about it in negative terms as a general rule. But today.
Er. Ma. Gersh!
I have started seeing my physiotherapist on a monthly basis. Which is more often than I see some of my kids. And they live with me! I have felt so close to getting on top of the subluxations. For so long!
And yet, the battle continues. When the joint slips farther than it should, it often gets stuck. This has a compounding effect. Because the joint that was injured primarily will no longer function correctly. This results in adjacent muscles having to pick up the slack. They will start to be overused. In EDS patients, especially, this is unfortunate. Because overuse of any body part, can result in more joints experiencing a subluxation.
I’m a Zebra; The Ehlers Danlos Phenomenon
While I have not been officially diagnosed with Ehlers-Danlos Syndrome. My hypermobility condition is very similar and I have many of the same symptoms. According to Dr. Alan Spanos,” If a patient thinks they have EDS, they are usually right.” Diagnosis parameters have changed a few times. Maybe I will have EDS when it changes next.
Pickles are Great; Until You’re in One
The last time I had an adjustment, my physio and I were working from a different angle. Instead of treating all the joints from the bottom, up. Like we have been doing lately. We tried treating what we thought was the primary injury. Caused by pulling a wagon with my 3 year old grandson in it. That bit of a twist, we thought, must be the first and then other joints follow. So we treated my upper back first.
When I left the appointment everything felt good. But over the next two days, I could tell, my body was not settling correctly. I had two trips planned and another appointment did not fit before I had to leave. That means I have been climbing mountains on one trip. And supervising a group of 40-some teenage girls at camp for the other, all with multiple subluxations and resulting pain. This is my life with Hypermobility.
What in the District One of Hunger Games IS THIS?
The diagnosis process for someone with hypermobility or EDS can be terribly frustrating. I would go to my doctor. She would run tests. She sent me to specialists. For years, every test came back normal. This should be a good thing. But when you feel something is wrong and you are being told, “All is well!”, depression and other mental illness creep in. The years of being left untreated and without hope, caused further problems.
Doctors started to talk more about treating my mental conditions and the physical symptoms were ignored. I started to think this was all in my head. If I just ignore it, I should be able to live a normal life. I minimized my pain to appear normal. I didn’t want to be a complainer anymore. I got really good at acting. But the pain remained and was causing more and more problems.
Your brain wasn’t made for this much noise. Grow a garden, touch some dirt.
-@twopawsfarmhouse
The Not-So-Subtle Art of Burnout
Shortly thereafter, I entered the phase of chronic illness burnout. I lost hope of ever finding healing. I didn’t want to go through the appointments and treatments. I was lost in my pain and grief at the life I was losing. And to make matters worse, those who were supposed to help me, didn’t believe me. The chronic pain was relentless and I felt too weak to do anything about it.
I started this stage of my life, with the perspective that chronic pain wouldn’t stop me. I wanted to work and play and live. I’d seen multiple stories of people who lost limbs or faced cancer. Against all odds, they went on to run marathons or achieve higher levels of scholastic learning. And yet, here I was with my wobbly joints and I couldn’t run to the living room. I had to adjust my expectations. And my life. To fit what was happening. Not what I hoped would happen.
When you experience continual physical symptoms that impact your ability to function in life. Your mental health is going to be affected, at times. The mentality of, ‘don’t let your chronic pain get to you’ is dangerous. I am learning instead to accept what is and make a game plan from there. Do not shame and blame yourself for having something you cannot control.
Decoding the Language of Symptoms
Craniocervical instability is a constant for me this month. Heralding a near perpetual headache that feels like my head is too heavy for my neck to hold. At other times, it is more of a pressure headache. Caused by an impairment of CFS flow. When I yawn or sneeze I think my head will detach. Other people who suffer in the same way can have brain stem compression. Symptoms include: tachycardia, heat intolerance, fainting, extreme thirst and chronic fatigue.
I often experience pain in the joints where the ribs meet the breastbone. Known as costochondritis. Inflammation builds there when the joints of the vertebrae meeting the spine have a subluxation. This feels like tightness in my chest. When I sit upright, the pain is excruciating. And certain movements can jar that vertebrae and cause pain, making it harder to act normal. I can’t sleep on my side. And my running has been put on hold. I have to walk instead😠 .
I have ongoing disc problems. Discs are supposed to help cushion and support the spine. In EDSers these discs are more rigid than usual. When these discs are damaged, pain will radiate down the legs and into the arms. In the past I have suffered from leaking or ruptured discs leading to pinched nerves. At this stage I am grateful to have built up enough muscles to protect those damaged spots.
There are 360 joints in the human body. How many do you have out today? I can count over 20 spots. Dislocations must be terribly painful. I have never experienced one. But I know subluxations. And they are agonizing.
Eye-Opening Symptoms You Can’t Ignore!
Pain makes sleep hard to smoke out. Add to that the fact, as an EDS or hypermobile patient you also make extra adrenaline. Bully for you! This overstimulating effect makes sleep even more arduous. The body continues to make extra adrenaline overnight leaving a body unrefreshed after a shallow sleep. This added endowment of adrenaline also brings with it, anxiety, abnormal nervousness and panic attacks.
After all this, it can be hard not to feel bitter when you see others out and accomplishing. Especially when it is something you would have liked to accomplish, but now you are not able.
And more especially when people say, you can do it anyway! No. I can’t.
I used to play the piano. I enjoyed practicing big, loud songs that used all my fingers and arm strength. I could make the floors of the house shake. I no longer play at all. Any use of my fingers results in pain in my hands, then arms, then shoulders, then back. I have not been able to get on top of this pain. It breaks my heart when I hear someone play the songs I used to play.
The lonliest moment in someone’s life is when they are watching their whole world fall apart, and all they can do is stare blankly.
-F Scott Fitzgerald
Writing is painful and often illegible due to loose finger and hand joints. After years of pain, my hands tremble and shake.
Here is where I make my justification for my crooked teeth. Dental and oral issues are common in EDSers. Teeth are prone to fracture from minor traumas. Gum fragility has led to bleeding gums. In recent years I have struggled with the joint of the jaw. Chewing too much or taking too big of a bite has led to subluxations. EDS also affects speech and swallowing muscles.
The brain fog is so real, I can’t even. I will forget things, feel confusion, have trouble processing information. There are times when it is worse. But there are no times when it is better. I feel like an inside out version of myself. I can still remember who I was, but I can’t seem to bring her back.
Heed the Symptoms or Suffer the Consequences
A crucial reminder here that doing your best does not mean pushing past all your limits. Ignoring your body’s signals. And using every minute of every day to be productive. Doing your best is what you can do within the boundaries of what your body needs from you. Listening to its signals. Without harming your mental and physical health. Not what you can accomplish when you disregard it.
Most days, I pattern my life around my symptoms. I often experience debilitating fatigue. Especially when I forget the pattern. It takes days, not hours, to catch up. I want to approach each day mindful of the energy I have and where I will need it most. I also have to walk the tight rope of sleep and exercise. Laying down and using functional movement. Too much or too little of these will throw me into a surging mudslide. That I do not see coming. And once it starts, there is no option but to ride it out.
I hoped to age like fine wine but it appears that with EDS I will relate more to an aged avocado.
Muscle spasms that make me twitch and pop are a common symptom these days. Probably due to overuse of muscles all day long. I lie down and it can look like I have popcorn popping in my torso.
I finally found my rhythm when I realized even the steps backward were part of the dance.
-unknown
All This is a Fine How-Do-You-Do; Now What?
With all this going on. I am here to tell you today and everyday, there is beauty in this life. Life is worth living. For the joy, and the pain. When you believe this and start to treat yourself as a whole. Your life will be forever changed. Mine was.
I don't ever crave extraordinary moments anymore.
Just small, gentle hums of beauty streaming from below, above and beyond simply from paying attention.
Sound. Light. Shadow. Art. Warmth. The night. The morning.
Dreams that are not far away but exist right here-
Already in my days, hands, and heart.
-Victoria Erikson, Rhythms and Roads
Holistic Patient Care Approach
Holistic health focuses on mind, body and spirit as one unit. Recognizing the cycles. Honouring womanhood. Instead of silencing symptoms, we seek to understand the root cause. And then offer natural, supportive remedies. Like herbs, nutrition, energy work, and somatic practices. Empowering women to trust their intuition, tune into the body, and reclaim health in a way that’s aligned and sustainable. It is a collaboration with the body’s natural intelligence.
Oubaitori
The idea that people, like flowers, bloom in their own time and in their own way
Have you heard of the blue mind theory? “It is the science that shows that being in, near or on the water allows you to fall into a meditative state. Increasing happiness. Lowering cortisol levels. And promoting inner peace for your overall well-being.” teaandtranquil.com
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.
- How do I want to feel today?
- What is one thing that would help me feel content at the end of the day?
- 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!
SUNBEAM ACRES 