The sun was warm but the wind was chill. You know how it is with an April day.
-Robert Frost
I return in this post to my hypermobile syndrome. If you’ve just joined us, I have an undiagnosed hypermobile condition, akin to Ehlers-Danlos Syndrome (EDS). I am extremely bendy. This week I was introduced, by a dear friend, to another tool that I can use to treat my pain. Tuning forks! I have been struggling with scar tissue. When I attempt to massage it out, the area becomes so inflamed that I can’t touch it without pain. The tuning fork is extremely useful for removing the scar tissue that my fingers couldn’t get. In my excitement I removed most of the scar tissue in my neck. This area has been bothering me since my second to last slip on the ice this winter. It felt so good to release so many tight, pinching spots. This sounds like it would be a good thing. It. Decidedly. Was. Not. The scar tissue was holding me together. I see that now. I should have removed it slowly. Now my neck feels like it is hanging on by a thread while the muscles work overtime.
A person with chronic conditions will have many moving parts and factors to consider in every decision. Often we will think, “wait, why did I do that?” “I knew better!” Do you know anyone that would benefit from the community we have here? Or someone that would appreciate knowing they are not the only one suffering through chronic conditions? And at times making terrible decisions in how to treat their pain? Share this post with them. I invite everyone to follow my social media. We are watching the trails and reattaching my neck muscles to prepare.
Let’s talk hypermobility. Collagen is the glue that holds our bodies together. It gives the body strength and elasticity. When the collagen is genetically altered due to a condition such as EDS, function of many bodily systems is affected. Collagen affects skin, tendons, bones, cartilage, eyes, and internal organs. It is more than just joints. When these systems are all out of order, mayhem ensues.
I am not a doctor. I have no training in this specialty. But I have lived it. I only share the symptoms that I am having or have had in the past. This is not medical journal material. Not based on book studies and lab work. It is based on me. My lived experience.
My 18 Irksome Evidences of Hypermobility
In no particular order, I share here 18 ways that I am affected by my hypermobility condition. I do this to highlight how all of us chronic comrades are suffering more than you know. In ways we can’t put into words. Unless you are very close to someone who is suffering. You will only ever know a small part of what they are experiencing. This blog has helped me put my pain into words.
1} Neuropathic pain– stemming from problems with the signals from the nerves. Felt as shooting, stinging, burning, tingling, numbing. Particularly difficult to treat. Often caused by pinched nerves due to shifting joints.
2} Inadequate passageway between the base of the neck and the armpit. Causing compression of nerves or blood vessels. Or both. This results in a wide variety of symptoms. Including pain in the shoulder and along the top of the clavicle. This pain can spread to the inside edge of the arm and down to the hand. Often numbness and tingling are present. Activities that most aggravate this area are driving, writing, carrying and lifting.
This explains the nights of excruciating pain after a day of working and driving and yard work years ago. Now I know better and I plan better. I no longer work. I drive only when necessary and only short distances. Yard work has to be done carefully and in short sessions.
Ipseity- (noun) sense of selfhood. The feeling of being the individual subject of one's own experience. A core aspect of consciousness. The inherent sense of being.
How does this fit with chronic pain? I think it is accepting myself. As I am. Today. And that is a person with pain. It is my experience. It has become part of who I am. Can you claim your ipseity with a renewed perspective regarding any chronic conditions or illnesses you have? You are not a hypochondriac. You are not overreacting and complaining. You are not lazy. If you are doing your best. It is enough. Period.
3} Riding in a car is also exhausting. Think of all the micro adjustments you need to make as you bump along in a car. While your body has to keep adjusting to stay upright, you don’t even notice. A flexy body bumping along trying to stay upright is working against already tired muscles. And painful spots that inflame on being used repeatedly. There is also so much extra sensory input to process.
My husband drives us everywhere. But I’m the one that needs to nap when we get there. Now I have an explanation for why. It may be good to occasionally open your body’s task manager to see what’s going on in the control center.
4} Hearing issues. Caused by mobility of the joints in the inner ear. Creating problems with effective sound conduction through the middle ear. This can lead to mild or moderate conductive hearing loss. This can also cause problems with dizziness as the inner ear is responsible for balance.
I wandered lonely
As a cloud
That floats on high
O'er vales and hills,
When all at once
I saw a crowd,
A host, of golden
Daffodils;
Beside the lake,
Beneath the trees,
Fluttering and dancing
In the breeze.
-William Wordsworth
5} Low back pain. The ligaments that are supposed to support and stabilize the spine and pelvis are often too loose. This means the muscles end up supporting the upper body. Loose lips may sink ships. But loose hips make it hard to stabilize the pelvis. All this can aggravate the sciatic nerve. And can lead to sciatica. A painful condition where pain runs through the buttocks and radiates down the leg.
Getting ready for Monday. Or a hypermobile person just trying to survive the day.☝🏼
6} Anxiety and panic disorder. The hypermobile body tends to overreact to stress and creates an excess of adrenaline. This can be mistaken for mood disorders. But is more likely linked to ongoing pain and fatigue. This could explain why counselling which is suitable in some cases, will not prove effective for all.
Thole– (verb) in American English- to suffer, to endure, to undergo.
You have tholed, you are tholing, and the toll it takes can be front and center in our lives.
7} The impossibly fine line we all walk between moving too much and moving too little. Movement causes pain. Movement can also cause injury. However, without movement our muscles decondition. Causing further strain on the joints where the muscles can’t hold it. Causing more pain and increased risk to injury.
8} Due to the collagen deficiencies linked to the condition, swallowing and speech difficulties may occur. If you have heard me speaking and then suddenly my words are slurring together. You’ll notice I start to enunciate clearly for a few words. Then my brain and mouth seem to get back on track. Unless I have been speaking for a while and then there is no coming back once the slurring starts. Making the muscles of my mouth work to swallow is also an issue at times.
I was just sittin’ here enjoyin’ the company. Plants got a lot to say, if you take the time to listen.
-Eeyore
9} Local anesthetic may not hold or work as well. I have experienced this myself and I have seen it in my son enduring dental work. It makes me squirm to think about it. Now I know the “drill”.
As I spend time in the forest, I am learning to pay closer attention to my body signals. Because it doesn’t lie to me. And I am attempting to pay less attention to my mind because it lies to me all the time.
10} Anything repetitive is out of the question. Overuses the same muscle group and strains already inflamed nerves in the process. My body never adjusts to the increased work load. It just stays weak and bendy. Like an uneducated peanut!
11} Muscle spasms are painful and regular. This is new to me in the last few years. It is down right annoying most days. It makes typing this post take much longer since I hit the wrong key and double hit another. It shows up in various and embarrassing ways. I have spilled the sacramental cup of water more than once at church.
12} We sit and stand in weird body positions. This is to hold the right spots together. We often fidget. Sitting or standing the same way for too long will result in a slipped joint.
13} We are often thought of as clumsy. I still run into walls when I get tired. Something I thought I would have outgrown by now. The truth is, between our unstable joints and dizziness we should be praised for all the time we are successful in staying upright!
ASAP
As Slow As Possible
As Soft As Possible
As Sustainable As Possible
As Sincere As Possible
As Steady As Possible
Allow Space And Pause
-Unknown
14} Oral and dental issues. Teeth are prone to fracture from relatively minor trauma. Gums can bleed after minor trauma such as brushing teeth. Chewing or sleeping wrong have both contributed to subluxations in my temporo-mandibular joint. I attribute my crooked teeth that are always on the move to my hypermobility.
15} Chronic neck strain. Due to weakness in the shoulders, activities that use the shoulders also use neck muscles. The ligaments meant to support the head are too loose. Neck muscles get overworked and strained.
16} Difficult and painful to write. This one hits home for me. I shake when I write. Not because I am nervous. But because my hand muscles are spasming and weak. If I have just washed dishes or had a shower, good night! You will not be able to read my scrawls. The warm water loosens things even more than they were. It is also painful to write for any period of time.
If the sight of blue
skies can fill you
with joy,
If a blade of grass
springing up in
the fields has the
power to move you,
If the simple
things of nature
have a message that
you understand,
Rejoice~
For your soul is
alive...
-Eleonora Duse
17} Disc problems. Discs may be less rigid than usual in hypermobile people. Soft discs are more prone to rupture or leak. Disc material leaks out and pinches nerves.
18} Brain fog has already been a topic of conversation here. Brain fog in the hypermobile may be due to lack of blood flow to the brain. This is thought to be from blood pooling in the legs thanks to our stretchy blood vessels.
Chronic illness is not so fun. It is easy to think about who I would be without this disability. It is easy to think about all the hopes and dreams I once had that have to go. But what about who I will be now, with it? What hopes and dreams can I create now that this is my reality?
Watch for the Signs!
There are signs to watch for in healing. Chronic is chronic. Cure is not in our vocab. But healing is available. Healing means acceptance. Softening. Learning and growing within our new reality. There are also signs to watch for at this time of year. Have you seen any of these signs of Spring?
- a nest being built
- a bird carrying a worm
- a muddy puddle
- blossoms
- a lamb or other baby animal
- spring flowers
- insects
- a bumble bee
- buds on a tree
- a singing bird
What have you already noticed this year? Write in the comments.
Just like the poems, quotes and uplifting thoughts laced throughout this list. The beauty of life and nature can be sprinkled throughout our days. To lift and cheer our souls. To lend beauty and joy to an often troubled heart. Go out and get some forest therapy today! We will be together in the forest soon!
Everybody needs beauty as well as bread, places to play in and pray in, where nature may heal and cheer and give strength to body and soul alike.
-John Muir
SUNBEAM ACRES 