2 of our sons work for my mom as the foremen of the family ranch & they help out w/her rental houses (she’s a dream landlord.) They live w/us in one of those rentals. Upside: we cover rent, food, & bills! Downside: they have weekends off, but today they had to go under our house to fix ductwork 🥵

Incremental gains are core to being a #pwME &/or a #pwLC Every tiny bit of energy, friction, sludge I shave off can decide if I have the energy to enjoy my tiny life or am just surviving. For me it’s things like coffee left for me in a travel mug, HUE lights, the Visible app, & an ecobee thermostat.

Sooo, this disgusting pos showed up in my world on here today. Join in the report/block party! (also pls forgive the lack of alt text, I don’t have the spoons)

This is ME

@WisdomMadeEasy

David joined #MillionsMissing with his #pwME wife Shaina. He shares that it is a beautiful life but that it involves grief for the life they hoped hoped for. Full video on YT. Take action for disability marriage equality w Disability Rights Education & Defense Fund https://ow.ly/m9ro50Z5nQY

I rarely drink things like Coke, but I do know how they work! Tonight I poured a Coke over ice while sitting in bed next to my spouse It began to fizz alarmingly I made an alarmed noise Then my brain froze & the Coke overflowed into my lap Spouse: it’s ok, that happens No, no it does not #pwLC

Our eldest & their fiancé bought a house a year ago. It’s a small older home that needs some work…in Massachusetts, which is a whole other kind of “older” & “needs some work” than in newer parts of the US. It’s day 3 of this-house-is-a-nightmare text tirades. I don’t miss being a homeowner at all!

The incidence & prevalence of #LongCovid worse than anticipated in the US, with 1 of 6 persons affected & of these 89% had at least 1 chronic condition requiring management. From 58 hospitals, 4 regions, 457,950 patients. Prevalence increased thru mid 2024! jamanetwork.com/journals/jam...

I started out today by having to walk through our house into kitchen for the 1st time in a while. It was bad, we have 3 big dogs & I don’t think a vacuum has been run in weeks! I was livid & essentially threw a grenade into our house group chat. Being angry costs so much, but I couldn’t avoid this.

Having long covid & therefore far worse me/cfs has changed so much. My driver’s license expired, I can’t renew it online - this is a logical issue that involves my spouse having to take time off work. Flash flood evacuation warning - my 1st thought: We all float down here 🎈

Dear home tech, I take my relationships seriously & I’m only looking for long term solutions. I spent months learning about you. I even got to know a few your exes. I thought I had reasonable expectations, but you updated & now you’re unreachable after 11pm. I’m just not sure this is going to work.

Youngest’s good friend made dinner, at youngest’s suggestion she added queso. He didn’t realize it contained capsaicin. It smelled amazing, I was very hungry, I chose to risk a reaction. I chose poorly. Now, post reaction crisis, we all feel various forms of guilt. #MCAS sucks

Doing my damnedest to try & do some of the things we planned while staying within my miniature energy envelope while silently repeating “getting frustrated won’t help” to myself… Wanna guess how that’s going? #neisVoid

Nothing says I love you (not at all I want your sandwich) like your dog fake snoring upside down with his head on your lap while you’re trying to eat lunch

Life w/long covid & me/cfs incudes dilemmas like: Spouse & I have a date planned. He’s going to get snacks for us, he’ll be gone for 2hrs. I’m feeling like I could play a favorite video game. Do I risk my energy by playing or do I rest until he gets home, & will trying to decide use up my energy?

Tbh, my whole body does

This disease is one of many dualities. For example… Heat makes me feel better (from showers, heat packs - NOT weather) BUT Heat flares my MCAS and makes me tired. There is no winning in #longcovid #mecfs #pots #mcas

When my body runs low on energy it panics & does this whole process that’s normally for when one breathes irritants - so now I’m exhausted & breathing is causing coughing fits, counterproductive much? #longCovid is the worst

Happy healing

ya know that “oh shit, I overdid” feeling? it hit me about 2hrs ago & being flat & quiet hasn’t helped - it’s actually gotten a little worse thoughts & prayers for my tentative weekend plans* *watch some comedy, play a video game, have my parents over - it was gunna be wild! #pwME #neisVoid

@vorpalithic.bsky.social @spool32.bsky.social I mean, maybe it could be a thing? I’m also very curious about the range they take into account. Anosmia is not even close to one size fits all.

Whelp, I’ve hit a new variety of desperation as a pwME & as a pwLC. My “plan” to feel less trapped is to try a week of doing guided breathing, 2 mins of very light exercise, & some woowoo vagus nerve stuff every day. It’s wild to me that it’s reasonable to be frightened by that list, but it is.

Caroline Kingdon speaking about functional impairment and mortality in #MECFS Biobank research has shown people with ME/CFS to be more functionally impaired than people with MS. And between 2001–2016, ME/CFS was mentioned on 88 death certificates in England and Wales.

Dark humor for the win

I’m losing my bed There’s a St Bernard on the floor next to me, thankfully she doesn’t much care for snuggling with the other dogs

According to this tiny 90lb lil guy thunderstorms require snuggles to survive

Wild how I made one of the best decisions of my entire very complicated life when I was 21 (& spool was only 20 😮) Here’s to over 30yrs of talking shit together on the internet!

I’m as happy to see the antiviral study stuff as the next guy, but I’m also really concerned about the “we’re saved!” vibes.

Spouse & I got curious about what a very healthy person’s data would look like on the #VisibleApp so he wore my armband for an hour. He did dishes & laundry, walked around the house normally, & got frustrated - he used .6 pace points. I used 3.6 taking a leisurely bath last night. #pwME #pwLC

When people talk about illnesses with fatigue, e.g. ME/CFS, Long Covid, etc. the fatigue has the same relationship to “tired“ as depression has to “sad“, or as multiple leg fractures have to dropping a book on your toe. Whatever you think tired is, clinical fatigue is *very* different.

The AI boom is unsustainable because the entire thing is predicated on cannibalizing the future. Is this a better way to search? Maybe! Will there be anything new for the AI to search if no one gets web traffic from Google Search anymore? There will not.

I know this is a wild hot take, but just hear me out: Doing basic things required to live shouldn’t cause PEM, that should be against some universal law of physics or something. Basically, I’m saying I’d like to speak to the manager… #neisVoid

Today I had an important talk about $ w/our son, did a bunch of logistics around work & family w/my spouse, visited w/my Mom, went over some financial planning, & though that shower I was so looking forward to tonight isn’t possible anymore I feel like a completely flattened badass. #ME/cfs choices

Maybe this is shallow of me, but every time the right flips out over a person who isn’t white being cast in a role, I get a little giggle. It’s like, look at all of those folk out here just showing their whole ass while proudly trumpeting that their family tree is only a trunk

Aaarrrrg Today: Temp: 89f 80%+ humidity 0% chance of rain 35mph wind gusts FULL of pollen & dust (this is where valley fever comes from) Lots of air quality warnings I’m over here hiding in my house w/various air purifiers running & look like

Corrections to the 2 biggest misconceptions about this “oldest Old English poem” news story: 1) we already had the poem, but this is a really good & old copy of it; 2) many sources miscopy the Old English letter for [w] as a /p/. More context and text in longer video on youtube: youtu.be/bzRB_gVRbSM

With Long Covid or ME/cfs you too could experience real variety in life! Don’t miss out on: My upper half is feverish, but my legs are ice cold! Perpetually feeling like you’re on a boat! I ate this yesterday, why am I allergic to it today? & the all time classic; mid-sentence confused silence…

Netflix suggested Confessions of a Good Samaritan to me, the story of a woman who anonymously donates a kidney to someone she doesn’t & won’t ever know. I understand why someone would do that, & I’ve never questioned why it seems obvious to me - & I really didn’t realize most ppl think it’s odd.

It’s day 2 of getting part way through writing a post, replying to a text, or responding to an email & having my brain just stop. The words lose meaning or get tangled, & reading over what I’ve written is confusing. I wish crashes had continuity. #neisVoid

Results Age xkcd.com/3245/

This is why, despite being queer & having LGBTQ+ kids, we’re still in TX. I have good drs (plural!) & our son, who has a complex mental illness, has an outstanding team! It’s awful that the risk of bad or abusive medical care is so ubiquitous that staying in a state that hates us is the safe choice.