sick day for sure not working kerplunk tired too tired the cleaning adventure no bugs tho!! no bugs on bed some bugs on floor on bed poster but not on mattress finally relief

Since it is #OrangeShirtDay, I grateful for my grandpa's survival and for the legacy of love, hope and faith that he was able to build and leave for our family. He carried the wounds and the scars but it was his healing that he left for us to carry on.

it’s definitely weird seeing the rise of fascism, and posters that look the same as old nazi propaganda coming from official US gov accounts and it’s weird that lots of kids have grown up with only this environment who can drive and are going to vote soon young adults who spent most of their lives

i keep going between “that was really dangerous to let her clean my bed today” and “omg my bed is clean” there was a bug on the bed post but not the mattress i think i’m holding them off and if not i can clean way easier once i recover and then i can keep it better

feeing a bit better after resting more i got some things close to me and i feel better i have enough things to be ok for a little bit and my work laptop lol and i’m feeling a lot better about things. it’s still going to suck and this was still a really bad idea, but the change in scenery is nice

idk where my cromolyn is i’ve been struggling to open my water bottles and idk where my grip is i should never had said yes to this. during a time i usually sleep. why can’t i think critically about things. why is my brain always on autopilot like that. that was such a bad mistake

H left before finish bc had to go to other work which sucked bed not fully done but i throw some on and it’s ok i gather my meds back my device and they came back in rushed without a mask then say they tested today. um.

Please help me reach my rent goal in time so I can avoid homelessness while I continue my fight for SSI! This is extremely urgent! 🙏🏽💚 $maelee21 V: @ Maelee-Johnson PayPal.me/maeleeJ ko-fi.com/maedaej #neisvoid #disabilitycommunity #spoonie

a-HA! work break through just figured something out aww yeah!! it had been something i told myself i would figure out tomorrow, but it just clicked now! i still need to do work for it but now i have my idea on how to approach it yay!

i told H what i wanted for my room she asked me a question last time about where i wanted a thing and, i didn’t know. i hadn’t planned that far. no one had ever helped me all the way through. so. i never hoped that she would do any more than a basic clean.

i sometimes feel like i really want to help more people haha i mean i always feel like that but sometimes i feel it more. almost desperately, after i read a news headline usually hah. and i wonder how i can do that. i need to be thoughtful about it though. i’m no spring chicken.

Yet again holding up my sign of desperation to try to raise storage funds. $325 including late fee for Sept, $275 for Oct. MUST PAY by Oct 1st or I lose my unit, including spare mobility tools. #PleaseShare, and help if able? #DisabilityCrowdFund #MutualAidRequest #HelpFolksLive2025

haha every moment i feel even a little bit steady and fine, i want to draw or paint or make halloween stuff or be creative it’s nice feeling this way again, even if i can’t act on it oh!! with all the cleaning, i found my water color kit!! from before the small accessible bookmarks

i feel off today i think it’s a mix between autumn slide and crashy because of the ongoing cleaning and also work always takes a lot out of me i feel a bit all over the place today. a mix of things. and some of the mix is my usual mix but more sharp today?

lots of frustration lots of messing up lots of clumsy dropping stuff then the meds hit and i’m back lying down again and resting and things are a little better ☺️

felt suddenly so bleh depleted not exactly sure why rested a bit and wanted more rest but i need to eat so i roused myself and am trying to take meds and eat. maybe make a nice thing? maybe it’s just autumn slide blahs

pinterest has a flood of AI generated fake food and i don’t like it help

i did a chart and then i felt done tired and then favorite coworker asked if i could help with her build hehe so, that will be my next thing. i keep building my charts not the way they want them to be though lol i need to rotate them so they can be read correctly in the place they go

new simple glow in the dark ghost mask chains !! ⛓️ 👻 pick your own color: pink, orange, blue, purple, or green. can be made with a silver or gold chain these are $10 (plus shipping) thru venmo/paypal or $12-$13 on etsy 🤍✨

is it weird that i feel cute now that my room is cleaner?? how odd haha like, i picked out an outfit (or as much as a bedridden person who only wears pajamas can) i feel cute? oh this is weird haha a clean space is helping my positivity so much!!

OMG!! it’s Green Mechanical Pencil!!! it’s been found!! yay!!!

bam! i finished a chart aww yeah

my scrunchy matches my shirt hehe yay matching and!! i have halloween fuzzy socks on!! these are witch socks yes yes no one is seeing it but it’s cute oh wait! H is coming back today i think so if will be seen haha ooo what a nice thing

a coworker made the folder colors so cute pink and purple and dark pink i forget what she called dark pink something fun but now our work folders are cute hehe yay

it hurts to click ow ow ow but i saw some fresh pumpkins today!! and my room is clean ish! so i am a happy pumpkin

hehe look at these lovey pumpkins!! fresh off the vine! 🎃💫

me: i’m working on my work boss: will you finish in time by tomorrow?? you have to present your findings tomorrow. are you going to be late should we move that? me: ….no we are on schedule. (she didn’t ask anyone else if they will be late there’s like a dozen people doing stuff)

i wish i had some time off to enjoy life and my clean room and paint and paint and paint hehe yeah i’m so lucky but i want more, how greedy am i right now? but it’s been literal years since my room was clean years and so long since i’ve had help like this

i keep getting giddy and filled with hope when i remember or see my cleaner room haha like, just now i was all “what if i can shave my legs again?!” i’m just excited for possibilities

in other work news, stuff i called out a month ago is still a problem because my boss didn’t do anything to fix it haha sigh.

i feel much better with my IV fluids yay but still autumn slide icky but a lot better with fluids! so glad i have them again. i want to paint hehe but work instead which is still good because i like being a live and eating snacks and occasionally painting hehe

someone at work asked for feedback on their document to know if it was what i needed to make my charts! this is how work should go haha glad it’s been no-chaos work lately and their document was fine, i will need to clean it up for my needs but i always need to do that. it’s nice that they asked

what am i supposed to do at work i forgot haha maybe i will try again later surely i wrote myself a to do list somewhere or someone told me what to do and i saved it my head is so foggy maybe bit more IV

i find happiness in my secluded world. then i see some current events and my heart drops into my stomach. i fear for my Black and Brown friends, my queer friends, my disabled friends. my community. experiencing the rise of fascism from a bedridden state feels like a bird in a cage. safely trapped.

eee!! my room is cleaner!! i woke up and didn’t think of it and i just remembered right now haha and more will be done today and the floor is more seen! and this is so exciting!!

good morning ☀️ i got a little more rest in yay feels like i didn’t sleep at all. but that’s #MECFS for ya haha. it feels worse for me in autumn slide time. I hope the autumn slide is gentle for you all today and every day 💛💫

i browse the timeline here a little bit but mostly i cannot and it is a low power mode day but i hope everyone having a nice day and some nice times yes yes

it’s weird how sick i am and how ok i am with it now haha being around another person cleaning my room was so much energy and i feel crashy and awful but mostly i’m so glad it’s getting done and H is helping so much and didn’t run away when she see the bugs and offer to help me even MORE

i felt very slow crashy yesterday was a lot having H in my room a lot of the day it was a lot it’s been a long time since someone else has been in my room i forgot how exhausting it is. with MECFS. it makes me glad i don’t have nurse visits anymore to save spoons for that

hehe my room is cleaner i leave it go to pee come back OMG so much floor! and H coming back to helping more on Monday! hehe idk if i can talk to them much on monday bc i will need to work before they come and then i will be tired yeah it’s gonna suck 😅 but i need help

Lots of us know how hard it is to get disability benefits. Mae could use a hand during this long process.

Bex wasn’t able to get extremely necessary cancer treatment this week. Again, share and give if you can. * I shouldn’t have to preface “cancer treatment” with “extremely necessary” but that’s where we are.

I kind of need to start begging for money again as the bills and daily expenses from my disabilities chip away at what we've collected for the relocation, but I don't want to and I feel bad about it, so I'm gonna half ass it for today to ease my way back in.

So many apologizing for needing help to stay safe/fed/alive. There’s no shame in needing a hand. Shame on our systems, yes. You? None. Be kind today. If that’s creating visibility by sharing an ask or giving where you can, it spreads and we need the kindness to spread. Sharing some here.

hehe clean yay H

i woke up at around my normal 2:30am but went back to sleep now i am up bc i really had to pee haha because i didn’t lower the IV flow early enough before sleep hoping i can sleep more or at least rest to recover from yesterday it was a lot yeah

6 HOUR PANIC. #PleaseShare, and help me keep my room? At $375 of $700 due 11AM TODAY, also desperately need help with $600 total storage (late and upcoming.) Anything helps, but please help ASAP. #DisabilityCrowdFund #MutualAidRequest #HelpSky

Due to unfortunate circumstances beyond my control, I'm awake

there was a moment where H looked at my bedding and said, do you want to wash your bedding next? and my eyes got all teary 🥺 and i nodded it’s been so long since i’ve had clean sheets so H said she will take all my things to a laundromat on monday so that she can clean everything at once

aww snaps i forgot to turn down the IV flow before i planned on sleeping and now my schedule will be off a bit it’s not too bad it will be ok. i had extra fluids today bc i kept my mask on and wasn’t drinking water bc H was cleaning my room. so, i used more IV to stay hydrated without drinking.