Tag: hyper mobility

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.

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.

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.

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.

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.

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