Son got all of the animals in here (a cat & 3 lg dogs: black lab mix, Staffordshire mix, & a St. Bernard) & he brought me coffee! Gotta admit, as a sick person feeling vulnerable, it’s nice knowing if someone the dogs don’t know opened my door the barking explosion would scare the hell out of ’em 😈

The exterminator is going to be here any minute. I’ve decided to shut all the animals in my bedroom w/me & use that as a convenient excuse not to have to get up or interact w/outside humans. IMHO, #pwme & #pwlc shouldn’t be forced to deal w/outside humans at all, but especially not during a crash.

Got a 1 on the #visibleapp this morning, feels more like a 0 or maybe a -1 My me/cfs + long covid & friends body has been wild over the last 18hrs. Couldn’t sleep, prone HR over 85, sitting HR drops into the 60s, standing is a crapshoot. I sorta feel like I’m unraveling, which isn’t great #neisvoid

@thesporkwitch

Aaaand it’s hanging in one of the intro scenes & spouse is now doing tech support for me Ah, Skyrim, your bugs continue to be stronger than the entire modding community

“What else could really go wrong at this point?” MY BODY: Thanks for asking. I actually made a list.

Love is saying to your spouse that you wanna play Skyrim again & them not only setting up the game but spending most of their Sat night setting up all the mods they know you like especially when you both know you can’t do it anymore bc of long covid & they know it would suck to have to face that

Got my wheelchair ready for when I got out of the tub, but now I’m just gunna wait a bit before I get in…

Digital physiological biomarkers predict within-person symptom changes in complex chronic illness www.nature.com/articles/s41... Screenshot from latest Science for ME weekly update #MEcfs #LongCovid

I’m listening to my kid talk to his D&D group about how much he learned as 1 of 4 white kids in his grade for all of middle & high school. From learning other cultures to loving new foods. That was a deliberate parenting decision & it’s awesome hearing him talk about it as an adult. Context: ⬇️

This study in Florida is still recruiting (they just sent out an email). If you might be interested in taking part, you need to fill in the survey: redcap.nova.edu/redcap/surve... Given there are blood collections, I presume you need to get to the clinics. #MEcfs #PwME

Raging! My eldest (& only queer) son is going off to his friends on Discord about how much musical theatre sucks. I was a theatre major in college, did community theater as a kid, & sang in competitive choir & solos for most of my school years! Where did we go wrong!

artemis splashdown comms or wow raid, you decide

Tried a new sleep med last night. I’m still trying to wake up 16hrs, 1 prescription long-acting stimulant, & a Redbull later. I guess I can’t complain that this one doesn’t work! 🙃 #neisvoid

Spouse brought presents!! iykyk

Yay! Spouse is headed home from his work trip! Things aligned so he was in the same city on the same day my parents flew home from their European mini-Grand Tour. They live down the road from us, so that worked out nicely … & I’m pretending they haven’t all been exposed to a bazillion unmasked ppl 🫠

I am in the worst mood I did things out of order & now I can’t find several things I use throughout the day, & I’m too exhausted to look for them I tried to give myself a little gift by singing a little bit & got a series of painful coughing fits instead #neisvoid

Overton xkcd.com/3230/

My spouse is in San Antonio for work, tonight he & a couple of his coworkers are breaking away to go get puffy tacos. I’m the kind of jealous that leads people to do things like get in the car, drive over an hour, & show up unannounced & uninvited. texashighways.com/food-drink/s...

Regardless of whether it’s all talk, when the leader of our country expresses plainly genocidal intent, everyone has to do something. For citizens of all political stripes, it means rejecting this madness. For Congress, it means taking action to rein him in. Now.

This is a regular topic of conversation in our house. Me: you stood for 4hrs at work!! 27yr old son: yeah, I was busy … um, & it’s kinda normal Me: oh, right. 🤦

Grammar xkcd.com/3229/

@itsachronicthing_

We’re big on supporting local businesses, but our internet is down & the little local carrier we’ve been loyal to since before they had fiber & after a national brand came in for half the cost wants a $150 after hours call out fee. Is this a thing now? It feels like asking for a tip at self checkout

Answered 2 short emails & had to turn off the lights, stop talking at all, get help to climb under a heated blanket, & have someone else close the bedroom door. Yeah, long covid is no big deal & won’t interrupt your life at allll 🙄

That moment when you get to the end of a "funny childhood story" and everyone is like "oh my god, I'm so sorry that happened to you"... I expected you to laugh, why are you offering to give me a hug?!

Today’s theme:

I’d do nearly anything to not be able to understand & identity with this - At the same time, I have so much love for everyone who understands. For everyone who had to pace to read this, who find their phones inexplicably heavy, & have had their once comfortable bed become an island.

Anybody else have an oh-shit-I’m-masking-around-the-people-who-love-me-&-need-to-know-how-sick-I-am moment? ‘Cause wow that sucked & has taken a couple of days of having to be honest w/myself about it that haven’t been at all fun. #pwme #pwlc Or anybody out in the #neisvoid ?

That took a bad turn, & no one got to go the store today 😔 Laughing takes energy & it turned out my me/cfs riddled body didn’t have more to spare so it went from lolz to blacked out to what I think of as low power mode (I can’t really move, but I’m aware.) I’m better now, but it’s dicey. #neisvoid

Spouse: you should ride w/me to the store, just hang in the car, watch videos Me: I dunno S: you can wear your comfy pjs Me: S: I’m just going to go make the list *walks to the bedroom door* no pressure *slowly turns, makes deliberate eye contact & holds it as he backs out & shuts the door* 😂🤣

Currently debating asking Spouse to bake cupcakes at 10pm Granted, youngest son’s gf is going to be here late tonight to stay for a few days & meet us for the first time & he just spent 2hrs making the kitchen spotless so maybe my timing is bad But then she’d also get cupcakes soooo

I had this exact conversation about 5hrs ago, I’ve been dutifully in my room ever since

My mom & stepdad are in Prague, very near where his family hails from, & somehow this made them both think of me, can’t imagine why! 🥰

I’m wincing for our eldest son. He needs a ton of dental work & he got started today, but there was a miscommunication & instead of getting a couple of fillings he had a surprise wisdom tooth removal! We weren’t at all prepared & live in the sticks so he just had ice cream for dinner.

I’d had mild me for yrs when within 1yr: Son had a major mental health crisis & moved home Mom got 2x of cancer, I was her advocate & lead caregiver Son got better Husband was laid off, our only income I was exposed to chemo meds Mom finished chemo I got pneumonia then C19 & am still sick 4yrs on 🤔

Facts. Before my diagnosis I tried to boost my health by exercising more, like we're all told to to do. I trained diligently, and a few weeks out from a half-marathon I crashed. It's taken 3 years to be able to walk for 20-30 minutes max. (I'm a "mild" case.) #mecfs #disability #chronicillness #cfs

Watching people I think of as friends of my kids go on to do things like write nuclear energy policy for their nation, help design & build scientific equipment that just got launched in to space, & work in an influential position for environmental justice is a bonus I did not expect from parenting

I…slept last night 😳 Like, I woke up feeling better than when I went to bed & maybe even felt “rested” (a concept I’m intellectually familiar w/as a #pwme & #pwlc) Maybe it’s the new sleep med, or maybe it’s a blip where I feel better then my body rips the rug out from under me the next day *squint*

Me, last night, reveling in blissful ignorance: Let’s get takeaway from that local place! Me, today, as a far, far less naïve person: Me/cfs + food poisoning = a new & creative level of hell (One of our sons got the same dish & he’s also still in bed reconsidering his life choices) #neisvoid