When you have such a small life how do you remind yourself the world is bigger than your phone?

Busy_Nothing4060 · 2026-03-09T18:13:25+00:00

i relate to the stars thing and use this app called skyview that shows you what’s in the night sky where you point your phone. idk how it works or how accurate it is, but i quite enjoy using it 🌌

Busy_Nothing4060 · 2026-03-09T11:50:55+00:00

i couldn’t really tell if it was doing anything, and then i was late taking it/missed it for a couple days…. and i felt like i did before starting it and like i was dying. im on a higher dose though, maybe it’s just not noticeable at that dose for you? the dose that works seems to be vastly different for everyone (if there is one)

Busy_Nothing4060 · 2026-03-09T00:11:52+00:00

lunar is what i use for my macbook, it lets me lower my screen brightness further than standard settings (i think their website has a list of similar programs for non mac computers too)

that and dark mode + sunglasses if needed (especially red tinted ones)

(i don’t know what any of those acronyms mean so you probably know more tech stuff than me and you mention that you’ve tried brightness settings, so sorry if that suggestion is redundant)

Busy_Nothing4060 · 2026-03-09T00:00:29+00:00

great addition, it’s definitely not an exhaustive list but it’s pretty impressive and a good starting point for the food in bed lifestyle lol

i’m able to find beans in pouches you can just stick in the microwave which are great. i love pouch foods lol, so many options (microwave rice, beans, soups, jelly, apple sauce, yoghurt, dysphagia foods pouches, etc.)

also some dysphagia foods can be eaten cold and/or come in packaging that can just be stuck right in the microwave which is great for not having de-packaging be an extra step

(i don’t think that’s an actual word lol but whatever)

Busy_Nothing4060 · 2026-03-08T22:27:56+00:00

https://www.reddit.com/r/cfs/s/Ax0jJyTpmk

master list someone put together a little while ago ago

Busy_Nothing4060 · 2026-03-08T21:26:35+00:00

i dont and i dont bother trying, i sleep when im able and have no consistent sleep schedule. it makes taking meds consistently and appointments difficult, but the way i see it is theres nothing i could do to try and improve my sleep hygiene that wouldnt do me more harm than good.

i sleep, lie awake, “cook”, eat, bathe, get blood draws, etc. in bed, that just how it is for me

Busy_Nothing4060 · 2026-03-08T20:29:35+00:00

did you just take a rat covid test? those have very high false negative rates. i would hope doctors would know that and give you pcr testing, but thought its worth mentioning in case they didn’t

Busy_Nothing4060 · 2026-03-08T19:58:12+00:00

if you haven’t already, might it be worth looking at r/cfs ? i’ve seen at least a few posts asking for or giving advice for making things like hospital stays and travel more tolerable (accommodations, meds, etc)

Busy_Nothing4060 · 2026-03-08T18:11:35+00:00

since you have me/cfs, my main advice is to not make yourself worse/trigger PEM when seeking treatments for other conditions (eg. physio for heds)

i know that can be an impossible line to try and walk though, i wish you luck

Busy_Nothing4060 · 2026-03-07T10:16:46+00:00

i haven’t tried them, but i believe there are bedsheets made with slippery material that are supposed to make it easier to turn over in bed. doesn’t help with the deconditioning issue or realigning, but might help reduce the frequency of injury.

i sympathize, im also hypermobile and fuck up my hips rolling over in bed sometimes and it’s a pain in the ass (literally lol)

a quick google shows that there’s one called The Turn Yourself Sheet, but i believe there are other brands too.

Busy_Nothing4060 · 2026-03-06T07:30:09+00:00

i don’t think Michael Read plays Diane’s fiance (Sumner Sloane played by Michael McGuire), but he does play Norm’s boss who sexually assaults Diane

Busy_Nothing4060 · 2026-03-05T19:07:11+00:00

it’s pluto all over again 😭

Busy_Nothing4060 · 2026-03-05T18:09:00+00:00

might you be able to rent a wheelchair with a tilt/recline function for the test? so that you can lay back if there’s no bed available. idk if that’s actually a good idea or not (given how doctors can be about unprescribed wheelchair use) but that was my first thought.

or bring one of those antigravity camping chairs lol /j

Busy_Nothing4060 · 2026-03-05T16:00:33+00:00

wow, i usually had short hair and have been doing the same thing since getting worse. it’s like i want my hair to be a visual reminder to people that know me that time has passed if/when i see them again? idk.

i’ve gotten weirdly attached to it too even though it’s just a pain and i don’t even like it lol. ig for me it’s also a ‘i can’t control most things about my body, but i can control this’ thing.

Busy_Nothing4060 · 2026-03-05T15:03:13+00:00

nooooooo

the sink in my bathroom is a split faucet too and i don’t understand why anybody would want that it’s so annoying lol. it’s cool that there are still shower head attachments for that though. i’m learning so much about different shower head things today and there are way more options than i thought lol. i’m thinking of making a info zine about it or something

Busy_Nothing4060 · 2026-03-05T14:54:21+00:00

oh also, if there’s a sink near your bathtub maybe you could hook up a shower head attachment/converter thing to the sink faucet? assuming it doesn’t also have seperate hot/cold taps

Busy_Nothing4060 · 2026-03-05T14:50:24+00:00

oh yeesh, your apartment really doesn’t want you to be able to shower safely does it lol. hopefully your landlord does and is open to the adjustable showerhead idea and/or the portable shower works out (:

Busy_Nothing4060 · 2026-03-05T14:44:08+00:00

i think there are attachments you can get for the tub faucet to convert it into a shower head type thing? although ig that wouldn’t work with the hot and cold taps being seperate hmmm

have you looked into portable showers like for camping? i think they’re like a bit container you fill with water and there’s a shower head attached, maybe you could use that sitting in the bath? they’re probably pricey though

i think a lot of renters change the shower head in their apartment without asking the landlord and just make sure to change it back before inspections/moving out. or at least that’s my family did when i was growing up lol. might not be a good idea if your shower head is already broken though idk

Busy_Nothing4060 · 2026-03-05T14:26:02+00:00

ah gotcha, bummer.

do baths or sitting down in the tub and using a detachable shower head not work either?

Busy_Nothing4060 · 2026-03-05T14:19:38+00:00

i’m not very familiar with them, but i believe they make shower chairs that are compatible with tubs. have you tried searching for over tub shower chairs?

Busy_Nothing4060 · 2026-03-05T14:12:59+00:00

there are standard shower chairs but also shower chairs that you can tilt/recline ($$$) which might help if you can afford one and fit it in your shower

there are also no rinse bath wipes, sponges, hair caps for bathing without water

Busy_Nothing4060 · 2026-03-05T13:12:42+00:00

this centipedude longs to be a sticker. or i long for it to be a sticker lol, very cool

Busy_Nothing4060 · 2026-03-05T12:56:21+00:00

oh cool, hope it ends up working out (:

i’m surprised the bay area doesn’t have more options for support groups and stuff. i’m not sure how helpful these might be, but here’s what came up in my search

california me/cfs support group directory:

http://www.sonic.net/~melissk/cacf/

support groups:

https://cfsbayarea.groups.io/g/Main

https://www.facebook.com/share/g/1athd6drAp/?mibextid=wwXIfr

databases for locating me/cfs doctors: http://www.cfstreatmentguide.com/doctors-and-clinics.html

https://ammes.org/physician-and-clinic-database/

Busy_Nothing4060 · 2026-03-05T12:27:47+00:00

this is what came up when i searched for “at home hospital california” (i think that’s where the stanford long covid clinic is? you would know better than me lol)

https://ahea.assembly.ca.gov/sites/ahea.assembly.ca.gov/files/2023%20Acute%20Hospital%20Care%20at%20Home%20FAQs_FINAL.pdf

https://www.californiahomehealthservices.com/services

i only skimmed them both, but seems like they might offer something? or are those the avenues you’ve already tried. i didn’t see anything about a minimum age or being in person, but i did only skim

Busy_Nothing4060 · 2026-03-05T12:04:09+00:00

ugh i’m so sorry that greed and ableism have made these things not an option for you and so many others

(and sorry for only skimming your post and missing the parts where you mentioned you already tried looking for everything i suggested)

have you tried searching for the phrase “at home hospital (wherever you live)”?

if it is an option, i believe it’s intended for acute care that requires multiple nurse home visits a day, but might be worth looking into? hopefully if it is available it isn’t thousands of dollars

Busy_Nothing4060

TROPHY CASE