i didn’t say what i truly think

which is. that boss is a bad manager and bad project lead and isn’t very logical in those ways to even understand the concept of all that, and they lead without listening.

but that is the problem i’ve seen time and time again. i am cassandra.

i told a coworker i am coming to trust more that i cannot keep working like this with the boss who is annoying me

and we are going to figure something out

because i don’t want to like. be transferred out or stop that work.

but it’s at a point where i cannot keep working with them acting like that

we have a new person joining and i got so excited and wanted to onboard them

and my coworker laughed and said yeah, i already put your name down to do that

hehe i was like a puppy

If I didn’t have to coordinate and manage help to clean regularly, or trying to take the trash out myself, I could spend my tiny amounts of energy for quality of life things

like enjoying the fresh air
painting
drawing
responding to friends here

It would uplift me so much 🥹

Right now, almost all of my energy goes towards survival tasks. Including working enough, managing multiple complex chronic illnesses that keep me nearly bedridden and in the hospital multiple times a year, and staying fed / warm / not overheated.

A little help would be so much to my small world

Also I do have a job working remote. So I can contribute in that way, by paying rent! But I take a lot of sick days and hours off, approved by medical leaves.

If I get some solid help around the house, I might be able to work more hours and help us both more! or heal more! …or make art 🥹

Once my room is set up to be accessible for my current low level of function, it will be MUCH easier for me to maintain.

And with Ommer Draven’s support for things like taking the trash out without me having to do a ton of coordinating with people, I can use my EXTREMELY limited energy to heal

I am in california and it’s a much more accepting state to be in for trans care and healthcare

also the weather is steadier here in southern california it does not snow and stuff

And, once the big mess is cleaned, it will be clean
Ommer Draven can help with that too

and help me with my room

We also have talked about other ways we can help each other

They can use the garage as a work shop

and we can share food, which means shared food costs! The savings from that like getting bulk yogurt we can scoop, and they can scoop for both of us, means we can both eat better

They have health issues too and living in a tent outside in a red state makes all of them worse.

But they have more function than me on more days, and could help me open boxes or bring me more medical supplies from the living room when I am too sick to move!

That will be life changing!

Ommer Draven is coming to live with me and help!

And unlike my former roommates, they are very nice about when I lose my words, and accepting of my disability, and understanding.

It will be nice having a bit of help, and a roomie who understands 💛

to do that they need to survive and ship stuff

right now most of my problems speaking are POTS related. it costs so much to speak its energy and just. low blood volume sucks

but as the day goes on i lose my words in an MECFS way and fatigue way and rhat is different

and people are expected to volunteer for work and it all works out

like if we need to make a new spreadsheet boss says we need that and i say I can do it! because that is my job

but also sometimes people directly ask me for help and that’s ok too

i can’t move much or talk much. it sucks a lot.

but my work is mostly support roles. and most of what i have to say is “ok thank you!” when someone asks me to help

or “i can help with that!”

this team is very nice and we all chip in and that is nice

there’s a lot of complications to this

but yesterday i briefly had a peripheral line! that i did myself! and that was nice haha

and today a friend is coming by to clean later a little bit

not my room the boxes in the living room. yeah. medical IV supply boxes and delivery boxes.

meanwhile. another part of my job is a complicated overview of something i used to do field work for and i am knocking that out of the park lol

i’m also doing well at pacing and all.

i’ve adjusted to no central line wel enough. it’s hard and it sucks but now it’s my norm. for now.

i am still not great at that either but i know different stuff than other people here and together we can make things happen and that is nice

some days i feel so stupid at work

because of brain fog
or because i kinda changed careers and so much is new even if it’s about stuff i know

and then suddenly it clicked that our job isn’t just literally make drop downs, it’s to make this a manageable document for everyone

and i had some ideas for how else to do that and keep it accessible

of COURSE i love accessibility hehe

there are a lot of plans.

i don’t know why my coworker kick started my brain today but i am glad

she suggested some drop downs and i’m like OH yeah that makes sense, that is right

and then i could even suggest things to build off of that lol

i guess it’s like. a plan book

a document spreadsheet that says a list of the plans we have so we know what we have
and some high level details to know what the plan contains but like. just to reference it

a table of contents of plans

the right place is “where is this”

because this is going to be a place to gather up a bunch of stuff and it’s from different areas but it’s going to be finite areas that are already defined and we know them

but the other things we don’t know yet so we can’t make drop down options

this is a kind of autistic literalism i experience when i am brain foggy

and i spent time looking at this and being all, uh do we make a drop down for the date??

and knowing that feels wrong but not knowing what is right

and missing the right place for drop downs

there are some drop downs needed

but it wasn’t until today that i realized ohhh they want us to clean this up and make it useful, practical, and a good template so there’s less clean up we have to do once we get the data.

and that’s because i got stuck on the literal request until coworker came

like

i sat here thinking what if i did a drop down for the numbers…

haha but there’s so many numbers that could be picked and that makes no none zero sense

and it took time to realize they want me to like. clean it up and make it nice. not just literally add drop downs

the drop down options are things i have worked with for like years lol

but my brain just. had no idea.

and i was like uh we can add… um… hm. i don’t know
how do we even drop down
why
what for

…. but like this is my job lol to make the things

open ended direction sometimes fumbles in my head

a boss asked me and another person to clean up a spreadsheet template and make the drop downs

and since that was asked i’ve been like
uh

i don’t know what drop downs to add
this feels complicated to me

luckily my coworker suggested some and that kick started my brain

brain fog. yeah.

my hair just below my shoulders. lots of big waves and a few loose curls! some straight pieces too because of course my hair isn’t consistent either. dark brown hair, i am white. my cami strap that can be seen is purple and pink.

my hair got so cute when i curled it, stopped brushing it every day, and stopped washing it so much (then brushing it straight)

i like my hair now. this hair style works really well for me. short enough to maintain and layered so not as hot, but able to be tied back.

and the curls 😍

a black and white tuxedo cat, sitting in a patch of sun in front of an electric blue cabinet. his eyes are half closed in a dopey happy way. he is looking at the camera, sun drunk and content

This is DQ my old roommates cat

and when i blacked out or got sick he would come by me and not leave until i was ok. and watch carefully.

i wish you could have a DQ support with you now but here is a picture of him sunning himself

Dr’s office: You need to come in ASAP. Me: Ok. Dr’s office: This is important. Me: Got it. Let’s do it. Dr’s office: Next available is mid-2029 MyBodyIsTryingToKillMe.com

i’m have a system where i only like a post after i decide if i wil comment or not and send the comment if yes

that way it’s like a checklist

but i just cannot do for the hospital comments

they lifted me up but i’m so tired still and behind

so fresh start! and thank you all for ththe beolidarity