Nailing It

This post is kind of a re-post, of sorts. Not a re-tweet. Or a plagiary. I’m doing a copy/paste from my original blog http://questionsmorethananswers.blogspot.com/ . I posted it there originally to explain my absence from blogging. I think I nailed it. My Mom says so, that’s good enough for me.

Advantage Patience

I have only posted to this blog three times since July of last year. Maybe some people noticed, maybe not. I am blocked, for many reasons. But the main is this; pain.

Pain disrupts sleepy time, awake time, why am I not sleeping time and all the times in between time. It washes over every aspect of daily life and you can’t seem to scrub it off. But, then, there are those breaks in the clouds. One day. A bright shiny day where that overwhelming monster of pain is so small it barely casts a shadow. You feel so close to normal that you would skip if you still could. So you grab that day and ride it till you can barely stand, hoping that tomorrow you’ll get back in line for the same ride.

Showing how much pain you are truly in (and I mean truly) doesn’t fly so well on social media, or out in the big bad for realsies world. Phrases get thrown around such as “pity post” or “attention seeker” and worse. So much worse. Instagram and Facebook have somehow turned into this realm of filtered filters through filters (guilty.) No one wants to spend time on anything too real. Anything that might bring them down from the projected reality. A social face of all is well. If I’m being honest, as a chronic pain sufferer, I don’t like to readily admit the levels of my pain. I fight it. I seek every distraction. It doesn’t always work though, and when it has been months and months on end, my optimism can become depleted. Never emptied, but that pool is hella shallow.

Now to that term Chronic Pain Sufferer. To suffer is defined as;
1. to undergo or feel pain or distress:

2. to sustain injury, disadvantage, or loss:
3. to undergo a penalty, as of death:
4. to endure pain, disability, death, etc.
I get it. It fits. The disadvantage. Yes. The Loss. Yes also. Then I think of the advantages I’ve had in my view on the world and my empathy through EDS and pain.  I have had losses in personal relationships and the distress it still causes is something I am working on daily. I wake up every day grateful that I have people in my life that want to go and do things with me. Friends that want to spend time with me. Not everyone has that. I do. I am totally bragging that I have friends. Great and wonderful beautiful friends. They know I’m in pain. But I don’t show them all of it. They see the crust, the top of the iceberg. Only My Mom has seen me in full throws. Tears that you aren’t quite sure when they will stop. She’s the safest net to dare allow myself be cradled.
I want to switch up the pain name game. I’ve been thinking of myself as more of a Chronic Pain Endurer rather than a sufferer. With endure being a verb, I imagine it as my actions and reactions during and owing to pain. Endure is defined as;

1. to hold out against; sustain without impairment or yielding;
2. to bear without resistance or with patience; tolerate:
3. to admit of; allow; bear:
4. to continue to exist; last:
5. to support adverse force or influence of any kind; suffer without yielding; suffer patiently.
To hold out, with patience and by doing so sustain without impairment. I think a fine trick would be to continue to exist, without yielding to pain. Ultimate EDS Merit Badge goal in sight.
My definition of not yielding isn’t the same as it might be for everyone else. For now, one piece of my not yielding is sharing how it is to live inside the body of a human with Ehlers-Danlos and Thalassemia without worry of how uncomfortable it might make the people in my life and social circle that don’t know what to say or do. I’ve never expected anyone to have the right best things to say. I’ve never courted pity. I promise. What I have courted (possibly vainly) is a connection to people with life-long, persistent illness and pain. To maybe let that one person with a chronic illness read that one phrase and go “Oh my word, that’s just like me” and then the world gets larger and smaller simultaneously.
Not everyone on this blog and my Facebook is interested in how much it hurts every time I eat or that I dislocated my knee AGAIN! So, the answer is to write on my EDS blog, https://loosestgirlintown.wordpress.com/ and not publish it to Facebook anymore. I’m hoping by releasing myself of that apprehension, the part of my mind that needs to be writing for this blog will be free as well.
This blog will continue to exist, as will my pool of optimism.
tennyson yieldrainbow puddle

Cross My Heart

On further reflection I realize how much I withheld from my last post here.  I wasn’t ready for details on specific diagnoses and symptoms.  I am also surprised at the level of stress it has caused.    You would think that nearly forty-five years of dialog about how to live with EDS would make writing it down easier, but it isn’t somehow.  I feel so much more vulnerable than when I blogged about my trek into the Cancer universe.  Getting down and dirty, the secret of who I am every day is intimidating.  I’m fearful of uncovering the true mess of me.  Displaying it all.  But why is that scary?  Emotions are never a frightening prospect in my world.  They are one of the few things I do well.  Sometime too well.  I think one of my hangups is how I feel shame for not thriving more when there are so many more people with diseases and problems that are so much more severe.  Not judging myself, learning to be present and grateful for the moment are my daily goals.

To clear up why I was at the doc’s, it was to rule out an Aortic Dissection.  Dissections are more and more common with EDS patients as they age.  They are tears in the aorta causing leaks and are high risk with Vascular Type EDS which I have crossover with Classic and Hypermobility.  So, when a new and persistent chest pain cropped up I worried.  I tried to ignore it.   The great news was that I was reassured that my EKG was rock solid and all my pain was the same old dislocated ribs and discs and yada yada.  I could have said all this in the other blog, yet I didn’t.  I was annoyed with myself.  Annoyed and tired once again. Which I will be, again.  Nearly forty-five years and I’m still learning.  I can honestly say I am grateful for all I know.  I mean that with all of my rock solid EKG.

Cranking It Out

Here I go into the land of another blog.  This time under the direction and intent to use it for my Ehlers-Danlos Syndrome struggles, travails, opinions, brick walls, epiphanies, gut-wrenching fears and bottomless streaming gratitude that strides alongside.  The title comes from my Family Practitioner Dr.Grover when I was only twelve and problem after problem kept cropping up.  One dislocation after another, my heart beating so fast I passed out at school, on and on.  The decision was made for my Mom and I to take a trip to the Mayo Clinic to see the uber specialists and then maybe get some definite answers that a small town doc in Preston, Idaho couldn’t provide.  During the visit, as he checked my stretchy skin, my extra lax joints and my heart, Dr. Grover looked at both my Mom and I and said “There isn’t much else to say other than you’re the loosest girl in town.”  My Mom and I have giggled about that ever since.

I marvel at how much I laugh about EDS.  I laugh a whole lot more than I cry.  But, I do cry and I many times stop myself from crying  because it is exhausting and frankly I get tired of being sad about EDS.  Tired of being irritated and my most used word to describe my emotional state when EDS is the issue is “Cranky.”  I think separating my writing this way might help.  With the crankiness.  I put this pressure on myself to not let the crankiness about EDS show.  The pain and the disgust with “are you kidding me with another subluxation” turns into a metaphorical shoulder shrug that lasts for a week.  While I laugh at the ridiculousness of it all, and hold tight all I have, and kiss my bunnies and send everyone I love a ton of messages because I’m in bed. Again.

I’m hoping I do the concept of this blog justice.  I’m also hoping I’m too busy to never write another post.