Week 5: Day 2

For the most part, I've been surprisingly able to scrape together enough motivation for rehab days. I think a lot of this is because they have made sure I don't go overboard, run myself into the ground, and get my ass kicked by the mind-fing fatigue. But man, today? Today I am cranky. Weather is all wonky, my period just ended, I'm tired, have had no focus in order to write or do anything creatively productive. And all I can think about is how MUCH TIME it takes me to do EVERYTHING. How I want to speed up but I can't—at least, not without fantastical bodily repercussions. I can't write this damn book any faster even though it's been years; I can't pedalpedalpedal through this program any quicker to the end of it/possible new quality of life; I can't take my sweet, darling dog on all the long walks she deserves and has missed out on over the last 10 years of this crap.

But it's not like I can slow down, either. Because that would just add to all the time it takes to do everything. Because then I would just be sitting still. Wouldn't I?

I try to take things as they come. To understand limitations and the reality of my situation. That things will happen when they will. And I'm usually pretty OK at keeping this viewpoint at the forefront. I have to be or else the stress and worry and emotional turmoil of it all would just exacerbate my body and nervous system and I'd wind up even farther back in my progress. But goddamn, is it frustrating.

So while changing my expectations and not perseverating on things has been a HUGE component of getting my health where it currently is, I have been flop-moping around the house all. freaking. day. Protesting and procrastinating on today's rehab like a champ because if there's one thing I can do other than throw silent, pissy tantrums, it's procrastinating.

But, the thing is, I know I'm gonna do it. Hell, I'm looking for my workout pants right now as I complain. Because what other option is there? Sure, if I couldn't physically do it today, that's one thing. But my pain is currently manageable. My fatigue, although present and accounted for, is no where near the shitbucket levels I've had in the past. So, really, what other option is there? I've already tried all the other stuff. I've tried not working out, not hydrating, not doing the bajillion other things I need to do daily. And I know where it gets me. So yes, while everything takes far too long and days (like today) I feel absolutelyfuckingcertain I will never accomplish any of my dreams, it's still happening right? I'm writing intermittently but I'm writingish. I miss soccer something fierce, but I'm exercising three days a week. Granted, it's low-level intensity compared to my full-on athlete days but, I mean, the last time I did any form of exercise three times a week was more than a decade ago. And Niyabear still isn't getting all the walks she deserves, but god am I trying.

And yet some days I can't help but think how nice it'd be it were, just, more. If #RareDiseaseDay was just the ONE day—where we can post all these infographics and things about POTS and then forget about it the next day like everybody else. But no, #RareDiseaseDay is every single day. And shit, I am still doing it. I have been doing it. And I will do it again today—not with a smile on my face or ounce of hope in my chest, but fuck it if I'm going to give up now. If I'm going to give up ever. There is too much I want to do. Too many walks I want to take with my puppy and too many things I want to see and and too much life I want to live. So if my choices are it all taking years upon sodamnmany years vs. never getting any of my dreams at all, then you can find me and my cranky ass pedalingpedalingpedaling away on this stupid, infuriating, and ironically-stationary, bike. Because, even though I may not be going as quickly as I would like, I'm still going. 

Just Sarah (Addendum)

The other day I wrote about having to tell a potential new friend I couldn't go on a 6 mile hike because of my health and how, for whatever reason, that was really difficult for me to do. I knew it was a passing emotion and usually I probably would have found excuses for it and what not. But I felt it and I honored that so gold star!

However, a couple dear friends reminded me of something very important:

Everyone has limitations. They are all different. Some may be obvious, some aren't. Some maybe persistent while others may change. And while, yes, limitations due to chronic illness are tough and unique, that doesn't change the fact that everyone struggles against his/her own self in some way or another.

So, I'm glad I was open (#Honesty2016, y'all!) because I realized that sometimes I focus so much on explaining what life with chronic illness can be like that I forget how we're all still a lot the same.

And, also, what else could make me feel more like Just Sarah than good friends. <3

"Each has their sufferings." <3

Inside an Obsessive Mind: Pie Poetry Edition!

First Christmas that my lad and I
will be apart from kin,
so I brainstorm something special
to keep the season in:

"I shall make some yummy things!
Like all the grown-ups do!
A turkey! Stuffed with stuffing!
And smashed potatoes, too!"

I stopped just short of "Vegetables!" -
hot damn, was that one close.
I may be faux grown-up-ing it
but veggies are still gross.

"PIE!" I yelled at very last
though I knew it since the start.
"Pumpkin and delicious!
And spiced to warm the heart."

So Christmas crept in tiny paces
until its Eve arrived
and I mixed and poured and baked
and soon a pie was pied.

"It's good." I said after a bite,
the fork still in my hand.
"But it's just not right 'enough' I think."
And that's when it began:

"I will make a new one!
To make it how I must!
New custard and new sweetness!
A new and flaky crust!"

'Cept two pies, although good,
might make digestion skewed;
"I could toss the first", I thought,
"but I don't like wasting food."

"Give slices to our neighbors then?"
But that was weird as well -
'Here is half a pie, new friends!
Aren't we friggin' swell?!'

"Accept it, Me!" I told myself.
"It's not a big 'to do'.
Love and friends are all that's right!"
And I know this through and through.

But minds are silly, funny things.
And mine the most of all -
Stuck in little endless thoughts,
looped and imbecile.

So here I am, I'm wide awake,
with options all repeating.
None of which'll fit just right
but none of which are leaving!