Calibers...

I've been rereading Toni Bernhard's book again, How to Be Sick from a Buddhist perspective.
Such an excellent book, with practical tools that work, at least for me.

I need to recalibrate. 

"Recalibrate." 

Interesting word. 

calibrate (v.)

"determine the caliber of," 1839, verb formed from caliber + -ate (2). Also "determine the relative value of" different parts of an arbitrary scale (1869). Related: calibrated; calibrating.

caliber (n.)

"inside diameter of a gun barrel," 1580s, from French calibre (by mid-16c., perhaps late 15c.), often said to be ultimately from Arabic qalib "a mold for casting." Barnhart remarks that Spanish calibre, Italian calibro "appear too late to act as intermediate forms" between the Arabic word and the French.

But English Words of Arabic Ancestry finds that the idea of an Arabic source "comes with no evidence and no background historical context to support it. It is far more likely that the word was formed in French" from Medieval Latin qua libra "of what weight" (a theory first published 19c. by Mahn), from fem. ablative of quis (from PIE root *kwo-, stem of relative and interrogative pronouns) + ablative of libra "balance" (see Libra).

Interesting.
I'm redetermining my balance.
I have felt too weighty on the side of desire for another to understand my ongoing chronic-illness path.
It's still here.
I'm still doing it.
I still live in 12-week cycles, divided into 6 weeks each. 
And I am wearied.
Who wouldn't be? 

Sometimes, when I mention, say, that I took a bath,
I get a response like, "Wow. there's no way I could get in and out of a bathtub."
I typically just say, "Showering is difficult for me."

Or that I drive at night.
"Wow. I can't drive at night."

Or that I ride a bike.
"I wouldn't have enough energy to do that."
I seldom respond with how hard it is to get out the door for a bike trip -- the struggle, even just to get dressed, not to mention all the biking gear I require, packing my food, water, pills, etc. 

 
Sometimes when I've communicated my struggles, or some sort of endeavor to communicate them, I've gotten the "growing-old-isn't-for-the-faint-of-heart" response.
I usually don't say anything, or I gesture in agreement.

But my illness has nothing to do with growing-old symptoms.

I'm sorry folks can't do things I do - like bike and drive and take a bath.
But when they tell me about cooking and cleaning and shopping and socializing and working, etc., I don't respond with, "Gosh, I wish I could do that." 

Sometimes I feel I should say more to educate someone.
But that's not my responsibility.
And I don't have the energy to put into it; or rather, my energy needs to go elsewhere. 
Nor am I going to be so presumptuous as to think they need my education. 

Where am I going with this?

Carol you are trying to put into words, some things that bother you.

Oh damn. I forget to charge my head lamp. 

Bathe, cut, feed, brush...

 I've not fared well since the beginning of October. The fatigue, the utter fatigue. 

There's a song with the line: "cause you had a bad day...." I don't know what the song is about, but that one line makes me think of folks who have an occasional bad day. When I heard the song last week, I chuckled and thought, My line would be, "you had a good day..." simply because my "good" days are rare, without a perspective shift. And yes, I'm well aware that "good" and "bad" are relative adjectives. 

I do my fucking best to stay thankful and find gratitude in the smallest of things. So, any critics and folks who want to give a "change-your-outlook" spiel, shut-up; that's how I feel right now.  

I feel that very few people really understand what it is like to live with such deadening fatigue. It's like my body is not getting its juice, and perhaps it's not. Perhaps my adrenal function has become so suppressed, that...well...it just doesn't have the juice. I wondered yesterday, If and when I get another MRI, I wonder how shrunken my adrenal glands will be?

I no longer have the severe heaviness that I once dragged around, which was also hard to describe. I no longer live with knots that move around on my wrists and hands, or with the feeling of heavy sand moving like mercury in my forearms. I no longer have the inability to make a fist with each hand. And I've had strength enough to cut my own fingernails since the beginning of 2019, or was it 2020? I've been able to lift my arms all year long, every year, since 2017. I could list other symptoms that have improved and even disappeared since the end of 2016. Such bizarre symptoms they were. Some symptoms are still odd, like the tenderness on the crown of my head that radiates outward. That started sometime after 2016, but I don't know when. I still have dizziness regularly. Tender palms and soles. Digestive issues. Shortness of breath. Weakness. Cognitive dysfunction. And the overwhelming fatigue. Most nights I sleep sitting up, due to stomach issues - one of the gifts of steroids. 

Where am I going with all this? 

My mind and thoughts and feelings swirl. I want to convey to any readers the overwhelmingness of it all. The day-in, day-out, 24/7, struggle. I want to be heard, not advised. I want to be seen...

Today, my goals are...to bathe and cut my nails. That's it. (My last bath was last Thursday; confessions of the chronically fatigued.) Other than bathe and cut, I'll feed myself and take my supplements and meds (which I take 5 times a day, every day). Every day, I chart how much prednisone I take so I know how to titrate up and down. I make notes as to any activities I may have done that day and how I'm faring. I've done this for almost a decade. 

I've also read today and will read some more. I've already napped. It's 4:55 PM. I'll get my teeth brushed at some point. Tonight, I may watch more CSI Miami reruns. My new motto is, "What would Horatio do?" 

I've not been able to cycle much lately, inside or outside. Outside, it's hard due to the cold. And my big toes are becoming numb more often than they used to. After all, I do have nerve damage, and I live with pain, a mostly low-level ubiquitous pain. 

In my head, I can hear the critics. Aw Carol. You have a husband and a house and food and clothing. You get a disability check. You don't have anything to complain about. You should be thankful for all that. You aren't a single mom or have a partner that beats you or berates you. Your material needs are met. You can drive and ride a bike. So shut up. You have no idea what it's like to really suffer. 

Okay....

Feel where it comes from...

What am I to do with my self today?

Up until 3AM last night. 

I completed Part 3:4 of my story.

 
I feel blue.

I cannot write to impress. I feel a little of that coming on. 

I cannot write to explain. Don't even try to explain. 

And you don't need to make up things based on probably-what-happened if you can't recall what happened, exactly. 

You can share the bits and pieces you do recall. 

And there is no guarantee that that recall is accurate, but you are being honest in that that is how you remember the situation. 

I think you do want people to grasp the enormity of it all... 

And the entrapment... 

It is another world. 

So ALL So everything. 

Sealed so nicely...this gigantic bubble, spherical in shape. 

More like a spaceship than a bubble. Nowhere else to go. 

That's how it was.
Inescapable delusion, believing any choice outside the household was tainted, wrong, impure, ungodly, 

It's like my fishbowl poem. 

Anyway, I'm really tired after the weekend of travel.
And having all my bowel trouble.
And not eating well.
And not vaping.

 
All these "nots."

But there was so much that was so wonderful about the weekend.
And, Carol, you were able to do...to get Kate, etc.
And you are glad you did it.
And you got all unpacked last night.
And you got to see the slide show of Patagonia. 

So, what to do today?
It's 2PM. You need to wait until at least 3:00 to eat. At which time you need to do a smoothie, seeing as you didn't drink it yesterday. So maybe today...just a smoothie and a salad. That is all. Though toast would be nice. But you ate what - 4 pieces of bread and 3 waffles and 4 spring rolls this morning at 2:00 AM? 

For today, simply ask, What's next? 

And do that. Do what mindfully enters your mind...not what reactionally enters.

Feel what it comes from. 

Feel where it comes from.

 

Feel where it comes from...