My back is extra hurty today, but today is not a stand up in the shower day, so I'm trying to sit in a way that alleviates pressure from my back, on my shower chair. 😅

Wtf

#DisabilityLifestyle @disability

Can other disabled people who have some sort of visiting home care help me put into words why it's so exhausting.

Like I know why, I just want to hear from other people too how they feel about it and what they think is effecting them. Etc.

And how it can be exhausting even when you know it's good and it alleviates a lot of other exhausting things.

@disability #DisabilityLifestyle

Today I'm practicing to actually refer to having PEM as being sick (Post Exertion Malaise). And not refer to it as "just PEM". PEM is some serious shit, cause it's pretty much an autoimmune reaction.

You see sick when you get PEM, don't diminish that. 💚

#DisabilityLifestyle

I was like, let me just finish off this game, then I'll get up and get ready..

Lol, I got up, spilled stuff, cleaned it up and now I have to sit down again lol.

#DisabilityLifestyle

I can almost feel excited that I might be able to get my dog their first proper guide harness! I just gotta get through our monthly bills and my girlfriend's camera, and then I'm like one inclusivity job away from it

I say when I've taken 3 this month and literally can't leave the house, shower, or even work multiple days in the past week week.

fuck.

#MEcfs #DisabilityLifestyle #AssistanceDogs #ServiceDogs

18 May update To do list:

- update crowdfund graphic
- sleep
- boost others' mutual aid threads a lot
- sleep
- Write Your First Comic workshop script
- sleep
- Write Your First Comic thumbnailing
- sleep
- shower (lol)
- sleep
- upload Philly pride pupper to inprnt
- sleep
- upload 80 infinitely autistic files to freesvg (hilarious)
- sleep

And or zone out and watch some bullshit tv show *shrugs*

#DisabilityLifestyle #EvelWork

Wooo I got a scholarship to the Write Your First Comic thing! https://www.storytellingcollective.com/courses/write-your-first-comic

Thank you to my friends @wenotfreeyet for encouraging me to apply for the scholarship and @secretsloth for helping me write the application (two iffy brainz sometimes makes a relatively decently working one apparently lol)

*dances in my mind because I'm tired and trying to save spoons for a shower*

#MEcfs #DisabilityLifestyle

Ate bread and wasn't able to work at all today. Bread is bad. Bad bad bad.

People exist who can just eat food and not die? Unbelievable

#DisabilityLifestyle

5 May To do:

- boost mine and others mutual aid threads a lot (doing)
- sleep (zoning out now)
- shower???
- sleep
- upload 80 infinitely autistic files to freesvg (next week...)
- sleep

And or zone out and watch some bullshit tv show *shrugs*

#DisabilityLifestyle #EvelWork

I'm up to like 8 things I can eat and not feel sick wooo the shake i've been having is really like 5ish things mixed together so kinda up to 13ish things

Gonna add something else today which is my favorite veggie packet!

#DisabilityLifestyle #autistic #MEcfs

I'm just gonna start muting and blocking them

fuck them for acting like only sighted people with working brains get/have #MEcfs

#DisabilityLifestyle is sometimes wanting to burn down the fucking orgs that "represent" you >_<

so I made 90 different #autism infinities and I'm like "I haven't worked enough!!!" lol I'll maybe be able to upload tomorrow? or the day after? ugh. in pain.

So if y'all could boost my support post (it is my first pinned post now) that'd be great, because I think we haven't gotten any yet and uhh need to pay housing and electric bill and shit D:

I have in pain and tired i'm fuckin done with this day. ouch.

#MEcfs #DisabilityLifestyle #chronicIllness

Tomorrow To do:
- reply to @Curator's bipoc thread
- sleep
- boost those two mutual aid threads a bunch
- sleep
- make autism and bipoc autism infinities
- sleep
- upload all the infinities to freesvg.org
- sleep

And or zone out and watch some bullshit tv show *shrugs*

#DisabilityLifestyle

Next week plan: only have shakes. stay in hammock except for maybe two of the days. sleep a whole bunch and work between the sleeps. Get friend's ko-fi goal 100%d and post my own too. Manage to shower once at least. Try not to die.

#DisabilityLifestyle #MEcfs #PoorAF #Tired.

coool joints burning already

I just fuckin love working through the goddamn pain xD

(I'm benig sarcastic but also trying to psych myself up because I have no fuckin choice yknow?)

#DisabilityLifestyle #MEcfs

Fuck your bright ass website about caring for your family member who has ME my eyes are dead and so is my brain

Ugh so fucking tired. 3 day crash that I keep pushing through because I'm poor af... this sux

#MEcfs #DisabilityLifestyle

I made life easier for myself, I brought one of my weights down so I can do my exercises against the tension headache if I'm downstairs as well.

It's such a simple thing, I could've done it a year ago, but also I didn't even have the IDEA to take one downstairs to make it easier for myself.

I guess this is #DisabilityLifestyle

What's a small thing you could do for yourself that would make something you struggle with immediately easier?

Do I want to use my limited energy on learning blender again / more? Ehhh not really

Strictly speaking I hate computers lol would like to have the energy to learn to sail and never be inside a house type building ever again for any fucking reason

But I guess since that's not happening maybe I'll get the focus to blender by watching some tutorials

#MEcfs #ADHD #DisabilityLifestyle #housebound

#brothClub
Got this to try since I was trying a bunch of broths anyhow

Not as good as homemade and isn't a jelly like our homemade always is. Tastes alright, not plain but not fab, needed a little soy sauce
#DisabilityLifestyle

Posting for @evel ! They are spuper excited (in a nonmoving way) they got their wireless keyboard and trackball and they are very gay and pretty. Thanks @maloki and everyone else who helped fund this!! It will make a huge difference in evel's quality of life

#MeCFS #disabilityLifestyle #hammock #TransDayOfVisibility "visibility" because they are in their pod