#scleromyositis

[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.

[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]

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]

If You Can't Find Something Good To Say...

If you can't find something good to say...you're still allowed to talk.

A January Jar is a lovely idea - put a good thing that happened in the jar every day of the day of the year and next New Year's, look in the jar and read back on all of the awesomeness that the year provided. That's... not what this empty jar is about. Sometimes being an empty jar makes you feel silenced. We hesitate to inconvenience people, or make them feel awkward about our Issue. I was told by a Stanford rheumatologist that I didn't have "enough" of a problem to diagnose. A lifelong vegetarian, he suggested I needed to stop eating red meat and "do some yoga." I have had people ask if I haven't "gotten over it yet." When I want to scream, I will put those thoughts and feelings here. I dunno - I have to put them somewhere. Eventually I hope to say something uplifting. But, until then: you're allowed to complain. And so am I.

[justanemptyjar]

Do you ever feel like the best part of you has been used up? Probably one of the worst things about having an autoimmune disorder is that sometimes I feel like all of the ME is used up, and all that's left is... IT.