Thursday, April 13, 2017

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.



Thursday, April 6, 2017

Press 2 to get Alive

"Yesterday was plain awful" (That was for you JD.) So, to lessen the awfulness and distract me from the pain, The Moms came for a visit.  Because she's the sweetest best kindest most lovingest Mom to ever be. True story.

We talked, giggled, laughed at bunnies and binged TV. I'd been hording a bunch of episodes of the British Baking Show in the depths of my DVR just for her to see, because they had Tiramisu and Trifle on them. Her faves. Then she saw her first ever episodes of Psych. I started her with the pilot because Ion TV is doing reruns and I could record from the beginning.

There was no way I could stand to cook so I ordered delivery from Pizza Runner. They have the best Vegan Breadsticks (my Mom loves them) and they have other great vegan options. But the funniest thing was the guy taking my order. I'm asking him about the pesto, if he likes it as much as the marinara when he stops me...

Guy - Oh man, you have like, the prettiest voice. Ever.
Me - Well, thank you. That's nice to hear. Now, I have a question about the turnovers. They're vegan too right?
Guy - Yes. We just make them without the cream cheese.
Me - Fantastic. I'd like a cherry one. That'd be...
Guy - (Interrupting) Your voice is just. So. Pretty. I mean. Wow.
Me - I'm glad you like it.

Dead air.

Guy - I guess you'd like to know the total huh?
Me - That would be perfect.

I made sure to say goodbye extra pretty for him. Nice to know even if my body is wracked with pain, my voice doesn't have to convey it.








The Bun

The Bun
If you don't like rabbits, you can suck it, shove it and then go soak your head.