emptied: life in the drained lane

Mystery autoimmune disorder(s)? Check. Chronic fatigue? Check. Sick of explaining why you sometimes still wear a mask...? Check.

[justanemptyjar]

Back after long silence, still trying to process, still just an empty jar, drained of all understanding. Two therapists later, still no closer to making sense of how to live with autoimmune disorders... still battling the insurance company, still waiting on prior authorizations and trying to deal with the awkward moment when doctors and pharmacists comment, "Wow, that's a pretty strong drug," or "Oh, that's a lot of meds," without snapping at their oblique questioning of me, my doctors, and my ...integrity? Something.

I acknowledge my privilege: doctors, insurance, and pharmaceuticals I can mostly afford. I have a partner who loves me, friends who want to hang out, and work I can do - for a while longer, anyway.

And yet it all still makes me... angry. Or, tbh, terrified, though rage is easier to name. I'm afraid of losing what I have, of revealing to judgmental, pitying, or disbelieving eyes how near a thing it is some days to not being able to handle it, to wanting to give up and just stay in bed. Does anyone ever learn to deal with this gracefully?

[lunamonchtuna]

to be seen without performing. to be heard without screaming. to be missed without disappearing. to be enough without proving it. to be held without falling apart. to be understood without explaining. to be wanted without conditions. to be. to be.

[justanemptyjar]

This is the roots of a poem.

[visorforavisor]

I think disability justice would be easier if abled people understood that being disabled is a mixture of all three of

I can’t do that without negative consequences

I can’t do that unless I have support for it

I can’t do that

and that trying to treat one of these as if it’s another one will get you nowhere.

[iplaywithstring]

can I add 4. I can't do that now even if I can at other times

[nonbeans]

Me: *wakes up from nap* hey body do you feel rested :D

Body: all our bones are frozen. Your muscles have withered. Your hands are numb. You have heartburn, and you're sweating.

Me: Body what the actual fuck.

[fibro-memes]

[justanemptyjar]

Reblogging every time I see this...

[midnights-dragon]

In case anyone is having a bad night

(The best of this post and its reblogs, but with links that work)

Here is a website where you can scroll down to all the different levels of the ocean 

Here is a website where you can see the future of the universe

Here is a website where you can press a ‘make everything okay’ button, over and over, until things really are okay

Here is a website that you can read if you feel like a burden

Here is a website where you can look at strobe illusions (TW strobe/flashing)

Here is a website where you can cut stuff up (TW blood/sh)

Here and here are websites where you can play with sand

Here is a website where you can draw with macaroni and other fun foods

Here is a website where you can paint someone’s nails

Here is a website where you can grow a garden with emojis

Here is a website with hundreds of videos of people hugging you (rightfully dubbed ‘the nicest place on the internet’ because it really is, y’all, it made me cry)

Here is a website that will take you to other useless websites

Here is a website where you can make a tiny cat play bongo drums (and other instruments!)

Here is a website to help give you gentle reminders <3

Here is a website where you can grow a tiny farm

Here is a website where you can take a bunch of scientific personality tests

Here is a website of calm rain noise

Take a breath. It’s going to be okay, I promise.

[fibro-memes]

[fibro-memes]

[fibro-memes]

[justanemptyjar]

"No, I'm good. No, I'm fine. Yeah, I'm okay. It is what it is...." That grief is the root of the iceberg is so much truth...

[justanemptyjar]

Post-exertional malaise seems like it's not something that should include walking to the mailbox...

[justanemptyjar]

Is anyone else quietly beginning the Spring/Summer Stress Cycle?

[justanemptyjar]

Mostly I put things on here when they make me want to scream, but sometimes I do have to laugh - hope you got at least a wry smile, too.

[chronicillnesshumor-deactivated]

Doctors are like: ughhhhh. You're confusing. Come back if you die

[justanemptyjar]

Right? Like, "Well... this is just really a weird one. People your age/sex/ethnicity don't usually get hit with this... I'm gonna consult with my partners... How about I see you in, oh, six months-to-never?

[nonbeans]

Me: does one chore

My body: time for sleep now 🥱

Me: what? I just walked to the recycling and back

My body: night ✌️😴

[justanemptyjar]

GAAAAAAAAAAAAAAH. The struggle is real.

[justanemptyjar]

Today, the jar is lying on its side, spinning...

I give myself very good advice But I very seldom follow it. That explains the trouble that I’m always in. -“Very Good Advice,” Disney’s Alice in Wonderland

Lately I have learned the phrase "activity hangover." It's what you get when you do too much with an autoimmune disorder. It feels like the past four months have been a full-on activity hangover. I was doing so much better - the meds were working, fatigue was intermittent, at least, and work was chugging right along, then - wham - I hit a new wall. As happens with so many people, my new biologic drug isn't working as efficaciously anymore. My labwork is showing rising inflammation numbers. As my symptoms multiply, my choices diminish - as do the number of "good days" I have. Dear GOD, I am so tired - and I'm tired of being tired, but other than lying down and weeping, there is nothing I can do. And so I return to living life by the Highlander's Principle: there can only be one. ONLY ONE CHORE: clean clothes, or tackling the bathroom so the slime molds in the shower doesn't spark some hideous respiratory disease? ONLY ONE ACTIVITY: well, sure, I *could* take a thirty minute walk through the neighborhood. Or, I could play it safe and do an eight minute, low-impact video workout. BOTH of them are going to make me need to ice my hips and back. ONLY ONE CHOICE: Today's choice is to deal with it. Cry or don't cry, it's happening. Like it or hate it, you're going to hurt regardless. ONLY ONE SPOON: that is, if you speak Spoon. If you speak Jar, not even sticking a spatula in there will produce anything... it's done. As always, there's a disconnect between who my brain thinks I am, and what my body knows I can accomplish. I can keep pretending that none of this is happening - keep failing to track my symptoms, keep ignoring the effect that crappy food has on my energy levels, and keep writing activity checks that my body struggles to cash. Or I can deal with my actual life as it is, and not live within what I wish it were. You'd think this would be easy, be logical: just stop fighting what IS, and deal with it. Instead, it's a lifetime wrestling match with my brain.

[justanemptyjar]

Read the whole poem here: https://andreagibson.substack.com/p/benefits-of-befriending-our-mortality It helps sometimes to remember we're all in the neighborhood.

[justanemptyjar]

Today the jar doesn't feel so fragile.

I was up at four, dreading the whole thing. No amount of breath practice, creating a mental script or reminding myself of what I would or would not say helped with the prospect of having to see a new doctor. I went into the waiting room this morning with a sense of dread.

We control so much of how we present ourselves. We accentuate our best bits, and layer over and deflect from the rest. With the right clothes, accessories, and attitude, we can present the image we choose... until we go to the doctor, and have to take off our clothes - our layers, our shields.

A doctor can open doors you don't want to unlock, ask questions you don't want to answer, and require that you do it all naked - literally or metaphorically. Add a murky autoimmune issue to the mix, and that discomfort is multiplied by shame. Why is my body attacking me? What did I do? Why can't I just shake this off? When do I go back to normal? My collection of symptoms - pain, skin plaques, hair loss, swelling joints, overwhelming exhaustion - makes me feel at fault for not presenting with something clearly marked as EASILY IDENTIFIABLE DISORDER on the label. Doubting my own observations and having medical practitioners doubt me has made me feel weirdly conflicted about my own health. I have gotten the feeling before that doctors think I'm lying, or wasting their time, and so I go in to new doctor visits with too long of explanations, too many words, too much on the defensive, where every word is a silent scream of LISTEN TO ME! LISTEN! DON'T DISMISS WHAT I SAY BECAUSE I'M TOO FAT OR NOT SICK ENOUGH OR TOO CONFUSING!

This is what makes a doctor who has empathy and listens worth everything. I found Dr. Cinque today who didn't act as if she'd never heard of any of my symptoms. I feel less crazy after having spoken with her. The nauseating spin of my own anxiety has slowed now, and I can breathe.

Sometimes all it takes is ONE humanizing encounter. One.