Masthash

#ChronicallyIll

I don't deserve that but still punishing myself.

#bpd #bipolar #depression #autism #Fibromyalgia #chronicallyill #spoonie

All the time.

It's my back up plan just in case I get sick of shit.

#bpd #bipolar2 #depression #chronicallyill

“Pride is not pride without including disabled queer people.”

#bipoc #queer #2SLGBTQIA #disabled #chronicallyill #blackqueer #autism

It's okay to feel useless. Because there are days when my body refuses to do anything, even when I want it to.

I have orders from my Doctor, Wife, and partners that I need to give in to that and just exist.

Because I spent so many years pushing myself to a breaking point, and now my body is demanding rest.

#fibro #fibromialgia #disabled #chronicallyill #spoonie

Tumblr user akindplace:
I’ve been trying to remind myself that I’m not useless when I’m sick. I’m not unlovable when I’m sick. I’m not worthless. I’m just a person that happens to be sick. My life is not doomed because of it. I won’t be left all alone because of it. And maybe you need this reminder too. 
Tumblr user beyond-a-name:
Honestly, I think it's kind of silly to worry about being useless. Sometimes you just are, but who cares. Your value is innate because you're a person, not because your useful. You are not made to be used. 
Sometimes you're gonna be a little useless! Sometimes a lot! Maybe always even. That's fine. People are still going to love you plenty, and people are going to understand and still enjoy being around you and having you around. Many of those people will even enjoy helping you, and you need to trust both them and the ones that don't that they're capable of making sound decisions with their time, including when they decide to help you.

You do not need to know why someone is disabled.

#disabled #chronicallyill #spoonie

Spending the day relaxing, and gaming a little. I'm listening to the doctor's orders to not overdo it and just know my limits. But also try to work out a bit, so I can build up strength.
For the past two or three days I've taken to pushing myself a bit, not by much, but I'm seeing where I have limitations.
Which sucks, but this is life now.

#fibro #Fibromyalgia #chronicpain #chronicfatigue #chronicallyill #depression

Touching or moving someone’s wheelchair without their consent is assault.

#disability #disabled #chronicallyill

"I'm really tired, sometimes I wanna disappear as if I never existed."

#bpd #bipolardisorder #depression #chronicallyill #spoonie #fibro

You're scared to tell people how much it hurts, so you keep it all to yourself.

#bpd #bipolardisorder #depression #chronicallyill #spoonie #fibro

Shiny Amygdala
1 week ago

Mutual Aid Request

Hello everyone.

This month of June has already been off to a really rocky start. Paychecks that were supposed to come, didn't, illnesses, and delayed assistance has put us in a financial bind.

FORTUNATELY we can pay rent, and the van payment, car insurance and utilities, but we may not have enough for medical supplies and essentials for this month.

My PayPal is not working for some reason and I can't accept monetary donations. My family does have an Amazon wish list though!

These are the items we really need for this month. Anything helps.

Tia for any help/circulation any one can do for us :pray::sunflower::purple_heart:

Link:

https://www.amazon.com/hz/wishlist/ls/3AEHSE288266O?ref_=wl_share

#MutualAid #Disability #COVID #trans #Community #ChronicallyIll #LGBT #Pride #autism #HidradenitisSuppurativa #Crohns #EDS #Pots #Disabled

I just want to sleep the day away and avoid being alive.

#insomnia #depression #chronicallyill

“Get well soon”…

Laughs in chronic, progressive illnesses and disabilities…

#disabled #spoonie #chronicallyill

We should send this to every Doctor that refuses to listen to us.

#disabled #chronicallyill #spoonie #chronicpain #chronicfatigue

Image description:
Text reads:
I got my doctor a "get well soon" card. He's not sick or anything. I just think he could do better.
-signed everyone with a chronic illness. You're tired of seeing us so much & were tired of not getting the care we need and deserve

Honestly, whenever my Wife or partners show my affection of any kind I tend to...look like a confused robot.

#bpd #bipoolar2 #depression #chronicallyill #cptsd

Haha, I'm running on windows vista.

#chronicpain #chronicallyill #chronicfatigue #spoonie

Image description:
Text reads:
Me: I am young 
My joints: *CRONCH*

I don't mind having things to do, doing stuff can be fulfilling and fun and (f)interesting. Except maybe inclusivity work... but i definitely 100% hate being sick, especilaly *this* sick. And that I could get even sicker.

#MEcfs #chronicallyIll #PwME

You know, I should be sleeping.

But once again my body decides to keep the "I'm shitty and can't do what it was originally intended" count really high.

I've been dealing with a messed-up combination of a flare-up, insomnia, and depression.

#insomnia #chronicallyill

That mood when you want to sleep, but a flare up hits and the world feels too overwhelming.

#disability #chronicallyill #spoonie #insomnia

Idris They/Them
3 weeks ago

Today has been tough, it’s always worse when I’m not feeling great and I’ve visited family (and see the support my sister gets.) I’ve been really lost today, not knowing what to do, or being able to decide on anything, even stuff that usually helps.

#Anxiety #Autistic #ADHD #AuDHD #MentalHealthDisorders #ChronicallyIll #Fibromyalgia #CFS #Agoraphobia #Meh

How I feel being chronically ill and not knowing wtf has been plaguing my body for years. Shit sucks, and I've been struggling.

#chronicallyill #chronicpain #disabled #spoonie

When something happens medically to chronically ill folks, it avalanches.

Please ensure you are taking some time to check up on your pains before that avalanche hits you.

#disabled #chronicallyill #chronicpain #chronicfatigue #spoonie

Lanie Carmelo
3 weeks ago

Been using #Brave #browser and like how fast it is and Speedreader mode, but also trying #Bing and #chatGPT. The new Bing is only available in #MicrosoftEdge so I've been opening it for that. Decided I like Bing's answers better. It's really starting to push me back to #Edge because it helps me a lot as an #ActuallyAutistic, #ChronicallyIll woman living with #MemoryLoss and #BrainFog. Helps that there are things I like about #Edge too. #ChronicIllness #NEISvoid #technology #accessibility #a11y

How it feels being disabled in the south:

#southerman #florida #disabled #chronicallyill #spoonie #meme

Literally what happened at my rheumatologist appointment the other day. I explained everything that I've been dealing with, and even showed him...

His response: "You shouldn't be in this much pain. You're 31. I don't understand this.."

But then just as I was about to become hopeless, he responds with: "But we're going to figure this out and I'm going to have some tests run."

Ya'll. I about started crying. He listened to me.

#spoonie #disabled #chronicallyill

Image description:
Text reads:
*Insert weird body thing here*
Doctor: "IDK" (shrug emoji)
Community: "OMG me too!" (Double heart emoji)
Jack (they/them)
3 weeks ago

Reminder that at times using the words 'minority' or 'minorities' to describe demographics that are subject to systematic bigotry/inequality/lack of resources/widespread misinformation/etc can lead people to believe that to some degree the harms done are just an inherent thing that will always happen to a group that makes up only X percent of the population. Even people who know purposeful harms are being done are likely to subconsciously assign some part of the blame for the situation to inescapable ignorance by the masses because of the size of the group effected.

I’m not saying the word minority is not often accurate in these situations or that there aren’t any contexts where it is the best word to choose, but in many contexts it is meaningful to use language that reiterates that people with social/political power are purposefully choosing to say/do things and create societal systems to harm a specific demographic.

If you are looking for a word to describe situations like this (or situations where the demographic experiencing these things is numerically not a minority) two great options are:

marginalized (which Merriam-Webster dictionary defines as “to relegate to an unimportant or powerless position within a society or group” and can be used in phrases like ‘marginalized identity/identities’ or ‘marginalized demographic/demographics’)

or

disenfranchised (which Merriam-Webster dictionary defines as “deprived of some right, privilege, or immunity” and is often used to refer specifically to being deprived of the right to vote but can describe a situation where any social or political right or privilege is being taken from a demographic)

I say this all as a member of many demographics that are minorities, but more importantly that are being actively and purposefully marginalized and disenfranchised by people who want us to not have any social or political power.

The words we use matter, and if we don’t choose them wisely it makes it harder to remind people why these issues matter.

#DisenfranchisedIdentities #MarginalizedPeople #MarginalizedVoices #Disenfranchised #Marginalized #Disabled #ChronicallyIll #Bipolar #ActuallyAutistic #ActuallyOCD
#Queer #Trans #Transgender #Nonbinary #Jew #Jewish

Make your life easier if you can.

#disabled #chronicallyill #disability

Image description:
Screenshot of a Tumblr post:
:rawrda:
This is your daily reminder to not be ashamed of making your life easy for yourself. 
Cut your food into small pieces, make the font size 30 on your e book, use straws to drink, get a pen that’s comfortable to hold, take more naps, walk slowly, eat another cookie, buy velcro shoes, re-watch the part you couldn’t understand the first time, write things on your hands so you don’t forget it... whatever you want and/or need 
Don’t let anyone tell you how you should be doing things. We don’t need to prove each other anything
Acey :neuro:
3 weeks ago

Despite the weather getting colder in New Zealand, it looks sunny and warm.

I'm still processing that I live here now... Can't believe I did it...

#NewZealand #Gardening #Garden #ChronicFatigue #ChronicallyIll #Disabled #Autistic #Today #AbuseSurvivor

Front view of our wooden patio, this side has a roof extended from the house. There's a tall wood fence surrounding the front area and separates another house from ours. There's a plethora of overgrown grass, shrugs, and flowers.
Left view of our patio, this side is not covered by a roof but shaded by a second neighbor's trees. A glass table with a folded outside umbrella rests in the center of this part of the patio. A dirtied, white plastic chair is pushed in. There's a green garden hose on the patio floor, a wooden bench that lines the right side of the patio, and a clothes line holding a few towels.

Reminder for anyone following me or seeing this post..

I'm a biracial ( indigenous ) creator, who is disabled, and chronically ill. I try my best to help raise up voices of marginalized people.

This isn't a plug, just a little post where I shyly tell you about myself and just try to reach out to others. I don't talk much, but I want to meet like-minded souls. Maybe be friends?

#BIPOC #2SLGBTQIA #twospirit #indigenous #bpd #depression #disabled #chronicallyill #spoonie #autism

Me; when I tell my body we need sleep in order to be well rested for our appointment in the morning and it promptly ignores me in favour of being wide awake and in pain:

#disabled #chronicallyill #spoonie #insomnia

Jack (they/them)
4 weeks ago

One of my favorite things about mastodon is the ability to write private notes on people's profiles.

Realizing I have a spot to put reminders for myself about a person's pronouns, labels/terms they use as self descriptors or specify they do or do not want to be used to describe them, and any other facts about them or interactions I want to remember is AMAZING (especially as someone in multiple communities where those things are often relevant to posts/interactions who has severe memory loss issues).

I made a little template cased on the info I am most likely to want to know so I can keep it all organized and also note if certain info is NOT shared, which I like a lot because in many instances someone talking about a demographic having never mentioned if they are part of it is very different than someone who has specifically said they do not belong to that demographic (ie as a Jew I tend to give more weight to posts about antisemitism by people who specifically share that they are Jewish but I also feel like there is a relevant difference between if I have not seen a person ever mention their religion at all and therefore they MAY be Jewish and someone who has specifically said they are a Christian-raised atheist).

I don't think I could overstate how positive it has been for me to know that instead of constantly worrying about forgetting basic info about a person I follow I have a note I can quickly check anytime I need to. I love it, it's great, 100/10 do recommend doing for anyone who would benefit from having a spot to keep track of stuff like this.

#Queer #Trans #Nonbinary #Pronouns #ChronicallyIll #Disabled #MentallyIll #Bipolar #MemoryLoss #Neurodivergent #Neurospicy #ActuallyAutisitc #ActuallyOCD #Jewish #QueerCommunity #DisabilityCommunity #NeurodivergentCommunity

Well it took 13 hours but me and @actualcassomary did it! Free to download but money incredibly needed and appreciated!

cw: it's fuckin sad!

https://aldercone.itch.io/help-me-zine-for-world-me-day-2023

No epub version rn because I could not get any convertors to work. I think in the future I'll handcode HTML then go to epub and printable pdf from there??

#MEcfs #chronicallyIll #Aldercone #WorldMEday #MEawarenessDay #Disability #zine #itchio

I think if I didn't have to work the measly amount of hours I do manage to that I wouldn't be getting sicker. And we're not even making enough money and I have to desperately beg strangers every month.

#DisabilityLifestyle #WorldMEday #MEawarenessDay #MEcfs #chronicallyill

amiTea
1 month ago

The long awaited #introduction has come! I’m Amity :remVV: a #queer and #trans chill #ChronicallyIll, grunge/goth #gamer who can’t pay the bills. I’m also a fan of #anime, most music genres (mainly female rap/hip hop, Kpop, electropop, EDM, neo-soul, R&B), TV/film, writing, birds, and spirituality.

Pls boost so I can find some more Black, LGBTQ, #disabled folk with similar interests!

brain turning to sludge

being pissy about what #MEcfs is called is for people who are less sick than me i guess. i don't care. it just killing me, my relationships, my family.

Gonna go crash and super hope my brain can work later today

#DisabilityLifestyle #chronicallyIll #PwME

My favorite other game is staring at a pill bottle I am holding accusingly and asking it "Did I already take you? I don't FEEL like I took you." and doing that for like 20 minutes to make sure you aren't doubling up.

#disabled #disability #chronicallyill #spoonie

Image description:
Text reads:
*opens pill bottle* 
*opens water bottle* 
*pours some water out into my hand* 
"Wait. No, that's...no.”

Stretching isn't enough I need my spine removed and repeatedly cracked like a whip.

#disabled #chronicallyill #spoonie #chronicpain

It’s not the job of disabled and chronically ill people to be positive all the time in order to make everyone else feel more comfortable.

#spoonie #chronicallyill #spoonie

If you need a mobility aid some days but not others that is OK. It doesn’t mean you are making it up. Chronic illness isn’t static, every day isn’t the same. You have good days and you have bad days.

Your need for mobility aids is still valid, no matter how often you need it. Don’t be ashamed to use your mobility aid. Also don’t feel guilty on the days you don’t need to use it.

Sauce: https://www.tumblr.com/notesforselflove/172992743660

#mobilityaid #disabled #chronicallyill

Kit Muse
1 month ago

Looking for a community to discuss health and wellness in a safe, caring manner, especially if you're #neurodivergent or #ChronicallyIll? Check out the Chicken Yogi Club. Free memberships grant you entrance to the social club and more.

https://club.chickenyogi.com #ChickenYogi

Cassowary
1 month ago

So I've been steadily adding photos to my Inprnt page. That means if you love one of my photos and want a print you could get one! I look forward to seeing what people like. All of the money, of course, helps support our #autistic #trans #Disabled #chronicallyIll #Indigenous-run #gameDev and #art studio! I hope it can help fund a replacement camera.

Anyways check it out!

https://www.inprnt.com/gallery/cassowary/

#photos #mastoArt #Aldercone

Lilli
1 month ago

I'm at the point in my journey, where energy management and preventative measures become their own part-time job.
#ChronicallyIll #Spoonie

Made pillowcase for the #MEaction thing and it should get there just in time hopefully

I am real fuckin tired now. Done with the day

#MEcfs #myalgicEncephalomyelitis #chronicallyill

A white pillow case saying "Help ME. I am so tired. Help my family. Sick since 2001" in black paint except for the ME and 2001, those are in red paint. Dry brushed with gray paint and the whole thing is pretty grungy

Things I wish I learned in #school: How to balance 50 different business ideas, projects, hobbies, etc and make sure you actually follow through on them. (And not burn out)

A nigga need employees for all this stuff. 🤦🏽‍♀️ On top of being #chronicallyill and #neurodivergent, lord help me lbs.

#Entrepreneur #BlackMastodon #Blackfedi #ContentCreator #SmallBusiness

Stop telling disabled people this shite.

We know our bodies.

#spoonie #disabled #chronicallyill

Theodora Rosenberg
1 month ago
Mx Kestrel ᓚᘏᗢ
1 month ago

Anyway, gonna start talking daily (if I can remember) about what brings me joy for some #DailyTransJoy

Today it’s my cute new compression socks to help with my POTS legs and the absolutely delicious loaded potato bake meal I just ate! #chronicallyill #transjoy

A pair of feet in greenish socks with a leaf pattern on them and D20 purple leggings
A pair of grey socks with dragonfly designs laid on a bed.

Please work, body. I want to go to the beach so badly tomorrow.

I don't want to be trapped in this house anymore.

This is worse than have severely debilitating depression & anxiety.

I'd give anything to go back to a decade ago when I was less sick.

Give me a time machine to go back before i was ever sick and give me a mask to wear

20 years is too long.

I'm not even the sickest person with ME.

#PwME #MEcfs #chronicallyIll

We have to take time for ourselves. It doesn't benefit you or your body if it's being pushed past the limits..

#disabled #chronicallyill #autism #adhd

Tumblr user breelandwalker:

A gentle and loving reminder that if you ever feel like you're useless or not doing enough or that your worth as a person is tied to your ability to produce content / work more hours / meet deadlines and quotas / function every day as though you were a neurotypical able-bodied person with boundless time, money, and energy (especially if you are none of these things)....

Babe, that's the patriarchal capitalist grind culture talking.

You have worth because you are alive and breathing.

Never forget that.
BlinkPopShift👁️🫧⤴️
2 months ago

Bed art history! Being chronically ill and making art from bed is not new. These are only a handful of artists that made work from bed. Do you know any others?

#ArtSchoolFromBed #art #disabled #chronicallyill #arthistory #bed

https://youtube.com/shorts/VkUJa2UEJEc?feature=share

Tom Kindlon
2 months ago

3/

It ends:

“All I ask is that next time, if you’re young and one of your friends has to keep canceling for mental or physical illness, give them the benefit of the doubt. And if you see someone young who is struggling, don’t tell them they should be grateful for their youth, give them your care, because they know all too well what they’re missing out on.”

#chroniclife #chronicallyill #spoonie
#chronicillness #spoonielife
@chronicillness @spoonies

Hypolite Petovan
2 months ago
@Andrewhinton Here are the hashtags I know about around the subject:
- #ChronicIllness
- #ChronicallyIll
- #ChronicPain
- #ChronicFatigueSyndromw
- #MECFS
- #LongCOVID
Anna
2 months ago

@Lilysea closes April 5th. Rally at the end? Please sign the petition:

https://www.aph.gov.au/e-petitions/petition/EN4872

It would help #crips like me a great deal.

(Petition Requests the Government to change #Medicare billing rules so that patients can claim #telehealth consultations as long as they have had one with that #GP in either 2019, 2020, 2021 or 2022.)

I don’t think it matters much if you’re from Australia or not.

#ChronicIllness #Disability #ChronicallyIll #PwME #PwLC #MECFS #LongCovid
@mecfs
@chronicillness

Lilysea
2 months ago

Recently Medicare rules changed so that you cannot claim ANY rebate from Medicare for a telephone consultation with your General Practitioner unless you have seen them IN PERSON in the past 12 months. This creates a massive barrier to medical care for anyone who is housebound due to chronic illness/Disability; and also to anyone who cannot afford to risk catching COVID in a doctor's waiting room. There is a petition to change the rules back here: https://www.aph.gov.au/e-petitions/petition/EN4872

#Medicare
#Telehealth
#GP
#GeneralPractitioner
#Disability
#Disabled
#ChronicIllness
#ChronicallyIll

Danny Boling 🌈 ☮️
3 months ago

"Telling #disabled and #ChronicallyIll people to 'stay home forever' is cruel. Our country’s most vulnerable deserve to be part of #society. That's why I'm still taking #COVID seriously. You should, too."

#WearAMask #CovidIsntOver #TakeCareOfTheDisabled #TakeCareOfTheSeniors

https://www.usatoday.com/story/opinion/voices/2023/03/19/covid-pandemic-not-over-high-risk/11472097002/
COVID isn't over. Why is everyone moving on but me? | USA TODAY

#IAmDB

Just been to see the rheumatologist, and he's super pleased with my progress.

I'm off joint supports, and now am increasing medication, coming off caffeine, and doing even more exercise, to hopefully exhaust me into sleeping 😊

#ehlersdanlossyndrome #eds #hypermobilityspectrumdisorder #hypermobilesydnrome #chronicallyill

a white hand holding a paper coffee cup. the coffee cup has a brown cardboard body, and a white plastic lid. The white hand also has an orange puffer jacket sleeve.

The background is a snowy street, with some trees, a car, and some terraced houses.
a white person, with short buzzed dark brown hair, looking at the camera. They are wearing black over ear headphones, an orange puffer jacket, a green jumper, and a blue rucksack. They are stood in the street, with a corrugated metal door to their right, and cars to their left.

Decided to take my YouTube video that mentions I have chronic health issues down in case potential employers see it, and the videos mentioning that I'm ace down so I don't get outed to family.

One day it'll be nice to able to be publicly me. Of course, if I can get to the point where I can monetise my YouTube then I won't have to worry about employers, but that's a way off, and also there's no guarantee it'll happen.

And that still leaves the matter of family 😐

:blobcat_thisisfine:

#lgbt #lgbtqia #asexual #chronicallyill

Lilysea
3 months ago

Recently Medicare rules changed so that you cannot claim ANY rebate from Medicare for a telephone consultation with your General Practitioner unless you have seen them IN PERSON in the past 12 months. This creates a massive barrier to medical care for anyone who is housebound due to chronic illness/Disability; and also to anyone who cannot afford to risk catching COVID in a doctor's waiting room. There is a petition to change the rules back here:
https://www.aph.gov.au/e-petitions/petition/EN4872

#Medicare
#Telehealth
#GP
#GeneralPractitioner
#Disability
#Disabled
#ChronicIllness
#ChronicallyIll

My co-op / household (it's the same people!) are really struggling! We are #autistic, #trans, #disabled, and are #chronicallyill. 3 of the 4 of us are #Indigenous (Chicane). So not the worlds fave ppl & shit is fucking hard.

(1 time or monthly)
- https://www.patreon.com/aldercone
- https://www.buymeacoffee.com/aldercone
- https://ko-fi.com/aldercone
- venmo & cashapp: aldercone
(our goods)
- https://aldercone.itch.io
- https://k-23.bandcamp.com

#transCrowdfund #disabilityCrowdfund #actuallyAutistic #SettlerSaturday #indieDev

My #disabled and #chronicallyIll household started #Aldercone b/c it's impossible for us to have "normal" jobs. We are trying to get enough regular support for us to survive right now. Community support of all kinds really keeps us going b/c we are extremely struggling. All help is great, from money to boosts and follows to kind and encouraging words!

(monthly)
- https://www.patreon.com/aldercone
(one-time or monthly)
- https://www.buymeacoffee.com/aldercone
- https://ko-fi.com/aldercone

#indieDev #PoCmade

grungy graphic with a bright orange wolf outline drawing, the words "Today is a good day to learn to thrive, together", and a fuschia cockroach sitting on top of a trans + philly pride rainbow. It has a whole bunch of links on it: twitch.tv/diceybrute + throne.me/evel + aldercone.itch.io + mastodon.art/@evel + patreon.com/aldercone + buymeacoffee.com/aldercone
3 months ago

"A new study by #OhioStateUniversity in conjunction with the #NationalInstituteOnAging has shown that #AdultChildren #caring for their #parents, as well as parents caring for #ChronicallyIll #children, may have their life span shortened by four to eight years."

🤷🏻‍♀️ at least i won't have to suffer a long life in this disgusting country, assuming i outlive my parents

(SARCASM) because... being left without options, support, outlets, adequate gerontological care or universal #healthcare, are truly the marks of a superior country & politic in good condition

it's quite amazing, how very prideful so many americans are... considering how little america cares for us. though... when looking at the abusive relationships of narcissists... this tracks. america being a narcissist, & citizens being codependent hostages enduring unrelenting serial abuse, because we don't know what love is

opinion: america is a failure. a plainly pathetic failure

#eldercare #caregiver #caregiving #elderly #child

https://www.lbda.org/long-term-caregiving-may-shorten-life-up-to-eight-years/

PajusCreations :autism:
3 months ago

@Curator Hi I’m Paju, Autistic, chronically ill and disabled jack of all trades when it comes to art’n crafts! I knit, crochet, paint, draw, sew, mend, upcycle, embroider, craft, cast resin and so on.

I dont have a shop set up as fulfilling and mailing orders is way too stressful when even my everyday life isnt in order atm.

any way, i do create almost constantly and it is my birthday today so please boost as a treat. 💚 #DisabledArtist #AutisticArtists #FiberArts #ChronicallyIll #ArtistOfMasto

round braided rag rug in the making.
half pom-poms (poms) in all the colours in the rainbow on a box.
two paintings hanged on wall. 1. content looking fox whisking his tail to make Aurora Borealis appear on the sky behind.
2. a content looking bear blowing sparkly bubbles.
gouache painting of sunflowers on royal blue background.

#PwME thought: Maybe it is all in my head?!

Same person: Ok if I rest with only maybe 2 hours of *total* non-physical activity a day for 4 days, then on the 5th day I can leave the house for a few hours, as long as I make sure I can do literally no physical or mental activity for 2 days to recover, and my girlfriend needs to know and our kids need to know and our whole life revolves around me in my hammock...

#chronicallyIll #MEcfs #disability #DisabilityLifestyle

ty @actualcassomary for getting my TV working again.

goddamn i am so fucking tired. ty hammock and ty TV, but fuck you illness. #MEcfs #PwME #DisabilityLifestyle #chronicallyIll

Jax
4 months ago

Being a human barometer is trash. I'm getting more and more migraines with weather changes. It's exhausting and I would like to cancel my subscription. #chronicallyill #chronicpain #migraine

Evie (SleepyCatten)
4 months ago

I don't know who needs to hear this today, but:

* It's okay to not be okay.
* It's okay to need support from those around you.
* You are NOT a failure.
* You are worthy of being loved.
* We love you for everything that you are, warts & all.

Okay? 🥺 :blahajHeart:

#trans #transgender #enby #NonBinary #genderqueer #genderfluid #agender #disabled #ChronicallyIll #spoonie #MentalHealth #POC #neurodivergent #ActuallyAutistic #ADHD #AuDHD

Tom Kindlon
4 months ago

4/

"As we meandered through this system, dazed and confused, the weeks have turned into months. We’ve now been on this hamster wheel for three years. Naturally, you feel like criminals — lawyers, experts, courts, procedures and appeals. You battle on knowing this has been designed to make you give up."

#neisvoid #chronicillness
#chroniclife #ChronicPain
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll @chronicillness @chronicpain @spoonies

Tom Kindlon
4 months ago

3/

"Rather than promoting learning and understanding of the nuances around chronic illness, the UWV packages all patients into a blob of the insoluble and leans prejudicially towards your illness being a temporary situation. One day you will get better"

#neisvoid #chronicillness
#chroniclife #ChronicPain
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll

rune
5 months ago

Requesting #MutualAid.

I am still $2,000 in debt after fleeing across the country from a traumatic home. I have been housing insecure for a  decade, my entire adult life, and while my current home is the most promising, I am still unable to work and struggling endlessly with interest and fees for this existing debt. It feels so small and yet impossibly large.

My abusive father has just rescinded all of his (meager) financial support as a punishment to me for a polite request. The good news: I will never speak to him again.

My bills are $250 a month. Anything helps. Please do not donate anything you cannot afford to spare.

https://cash.app/$RuneArcana

#actuallyAutistic #ADHD #AuDHD #chronicallyIll #disability #housingInsecure #CPTSD

Lilysea
5 months ago

If you have a medication that you take at random times of day on an as-needed basis where you need to avoid accidentally taking dose #2 too close to dose #1, or need to avoid accidentally taking more than the safe amount in 24 hours - Paracetamol/acetaminophen/Tylenol is a common example - you can send yourself an SMS/text message on your phone so that you can easily see when your last dose was, and how many doses you have had in 24 hours.

#ChronicallyIllTips
#Spoonie
#SpoonieTips
#NEISvoid
#ChronicallyIll
#Disabled

rune
5 months ago

Well, here goes... Requesting #MutualAid.

I am still $2,000 in debt after fleeing across the country from a traumatic home. I have been housing insecure for a decade, my entire adult life, and while my current home is the most promising, I am still unable to work and struggling endlessly with interest and fees for this existing debt. It feels so small and yet impossibly large.

I just got hit with $60 of overdraft fees due to a transaction error. I'm disputing the charges, but I am so, so tired, and I just want to worry slightly less about my finances and focus on recovery.

Anything helps. Please do not donate anything you cannot afford to spare.

https://cash.app/$RuneArcana

#actuallyAutistic #ADHD #AuDHD #chronicallyIll #disability #housingInsecure #CPTSD

Tom Kindlon
5 months ago

🧵
I thought this was very good:

"Insights into My Chronic Illness" (2021)

"Written from the perspective of an individual with chronic illness to a #caregiver, friend, spouse, etc. This letter provides insight into the patient experience & how you can support them"

https://batemanhornecenter.org/wp-content/uploads/filebase/Caregiver-Letter-Insights-into-My-Chronic-Illness-V5.pdf

Extracts to follow

@chronicillness @mecfs @longcovid
#Caring #Caregiving #chronicillness #chroniclife #ChronicPain #Spoonielife #hiddenillness #invisibleillness
#Spoonies #Spoonie #ChronicallyIll #CFS

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Stories and Folklore
5 months ago

Good morning Gang,

I've been pretty quiet recently and that has been because of #Arthritis -- even though it was isolated in my left foot and ankle it has caused me a lot of problems. The pain has made me feel miserable and because I have been walking in a weird way it has given me terrible back ache.

In summary I haven't really felt like doing much creative at all.

I am starting to feel better, slowly, slowly...

#ChronicallyIll #ChronicPain

Juliet Martinez
6 months ago

New here!

I'm a #GenX #Journalist and managing editor of a #CommunityNewspaper in #Pittsburgh. Pronouns are they/them.
I'm #ChronicallyIll with an #InvisibleDisability and two wonderful disabled and chronically ill kids. One of them turns 13 today! 🎂💚💙💜

I report on an array of topics affecting communities in my circulation area, including #Infrastructure #Transit #FoodJustice #Health #MentalHealth #Politics and so much more. Looking forward to some good conversations here.

#Introduction

Squidly Co.
6 months ago

Here is today's shameless #selfpromotion post because I'm #disabled and groceries are fuckin' #expensive. :hearthands:

Do you like stickers? Do you like supporting marginalized creators? Great! For $5 a month you can get a fresh batch of stickers in your mailbox!

These stickers are just a few examples, but you'll definitely love them if you're #queer #chronicallyill #polyamorous #nerdy and/or #kinky!

Patreon Link is in my Bio. 💙🤙🌈 #mastoart

A pill of bright, colorful stickers. A few readable ones say things like 'Monogamy? In this Economy?' 'I'm here, I'm Queer, My joint pain is moderate to severe.' Theres also a purple Axolotl.
Cap'n Mastodon
6 months ago

Someone said elsewhere that this (meaning the #pandemic) won't last forever.

And, yeah, there may be some solace in "this too shall pass." But at the same time, if #COVID were to disappear tomorrow, could life really return to the way it was?

Even if you set aside the devastating facts that we can't regain lost life and that people have been permanently disabled by #LongCOVID, is a return to "normal" even possible? Or desirable?

No. "Normal" was only a pleasant illusion that allowed the privileged to ignore the crushing of #life and #equity and basic human dignity beneath the gears of #capitalism and #ableism.

If a sterilizing #vaccine became available tomorrow, I would be #thankful, but I wouldn't be able to unsee the last three years.

@novid #COVID19 #disability #ChronicallyIll #InvisibleDisability

Voyager (they/hen)
6 months ago

Apparently introductory posts are the way to go for meeting new friends, so let's go!

Hi, I'm Ina, or Voyager, if I feel like it. I'm a #queer #nonbinary #librarian from Germany. Also a #NorsePagan (I specifically work with #Loki, #Freyr, #Thor and to a lesser extent #Sigyn). I love #bunnies, #dnd, #podcasts, #fantasy, #scifi, #space, #science, #videogames, #nature, #libraries, and many other things. Sometimes I'm an #author, albeit not particularly interested in publishing.

Misc info I didn't know where else to fit in: I'm #ChronicallyIll and #neurodivergent. Politically I'm closest to #ecosocialism. I support #LandBack, #BlackLivesMatter, #MeToo, #PrisonAboliton, #PoliceAbolition. I strongly believe in #equality, #DisabilityJustice, #ClimateRestoration, #FatLiberation, #SWRights.

Frequently featured other topics are #politics, queer stuff, #ChronicIllness, #MentalHealth, #accessibility, #inclusivity.

"Media I like" section ahead! To find fellow fans and give you an idea of my tastes :)

Podcasts: #CriticalRole, #TheMagnusArchive, #TheStrahdcast, #TheSiltVerses

Books: #StormlightArchive, #TheLockedTomb, #Witcher

Videogames: #DragonAge, #MassEffect, #Witcher3, #PathfinderKingmaker, #HorizonZeroDawn

That's all I can think about for now! I hope I can connect with some cool folks!

Colin-Roy Hunter
6 months ago

@kevmarmol Well #UKgov insists on all services being digital but has thus far failed to provide internet, a tool and training for elderly, #disabled &/or #ChronicallyIll nor DE-households. It is a deliberate policy of #exclusion to reduce the #WelfareState.