#chronicilness — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #chronicilness, aggregated by home.social.
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1 year warranty on my kidney expires today - been a year since my transplant day 🎂
#KidneyTransplant #KidneyTransplantation #KidneyDonation #KidneyDisease #ChronicKidneyDisease #CKD #ChronicIlness
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That white landscape is quite beautiful, but #snow restricts my mobility quite a bit.
Since I have "drug" induced Parkinsonism, I walk as if there's snow on the ground in every season. Now that it's icy, I'm just housebound.
I can walk reasonably well with spikes, but you can't wear them to/in the supermarket or so...
.....I'm glad it's thawing.Are there other people here with #Parkinsonism? I'm in to liking photos of your cat 🙂
#ChronicIlness #Environment
#Medication #Balance
#Welcome #Thaw -
How can I promote my #crowdfund if I can barely get online? I won’t survive much longer in this house. My doctor agrees. I’m declining and there’s no treatment that can work while I’m constantly being #abused #neglected #controlled you name it.
Please help promote my crowdfund I don’t have long.
https://chuffed.org/project/161937-help-anna-escape
#SevereME #ChronicIlness #MECFS #Disabilty #MutualAid #Neisvoid
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How can I promote my #crowdfund if I can barely get online? I won’t survive much longer in this house. My doctor agrees. I’m declining and there’s no treatment that can work while I’m constantly being #abused #neglected #controlled you name it.
Please help promote my crowdfund I don’t have long.
https://chuffed.org/project/161937-help-anna-escape
#SevereME #ChronicIlness #MECFS #Disabilty #MutualAid #Neisvoid
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How can I promote my #crowdfund if I can barely get online? I won’t survive much longer in this house. My doctor agrees. I’m declining and there’s no treatment that can work while I’m constantly being #abused #neglected #controlled you name it.
Please help promote my crowdfund I don’t have long.
https://chuffed.org/project/161937-help-anna-escape
#SevereME #ChronicIlness #MECFS #Disabilty #MutualAid #Neisvoid
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How can I promote my #crowdfund if I can barely get online? I won’t survive much longer in this house. My doctor agrees. I’m declining and there’s no treatment that can work while I’m constantly being #abused #neglected #controlled you name it.
Please help promote my crowdfund I don’t have long.
https://chuffed.org/project/161937-help-anna-escape
#SevereME #ChronicIlness #MECFS #Disabilty #MutualAid #Neisvoid
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How can I promote my #crowdfund if I can barely get online? I won’t survive much longer in this house. My doctor agrees. I’m declining and there’s no treatment that can work while I’m constantly being #abused #neglected #controlled you name it.
Please help promote my crowdfund I don’t have long.
https://chuffed.org/project/161937-help-anna-escape
#SevereME #ChronicIlness #MECFS #Disabilty #MutualAid #Neisvoid
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This one's for my people in the #ChronicPain and #ChronicIlness worlds...I'm now up to 17 pills a day, and I've having trouble managing them (they've ended up all over the floor a few times). How many pills you all on? Should I be asking for fewer?? Anyone got any cool ideas on homemade blister pack day-to-day thingies?
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When you have been confused all morning and felt like something is wrong and you haven't been able to put your finger on it. And then you realize "Oh, ooooooooh... I don't have much pain today at all and feel well rested". That us so uncommon for me and have had a pretty bad flareup recently.
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plz #boost Situation terrible 😔
Abuse and not fed 2 days. Living on scraps. I don’t think can survive much longer.I’m fleeing #abuse and #neglect Denied basic needs for years.
If anyone wants to take me in & be my #carer you’re welcome to help.
I am #disabled but you really just need to do basics around a normal day. Bring me some food. Throw on some laundry.It would include carer allowance (not means tested, about 75$ week) carer allowance (up to about $500 a week if you aren’t working, or possibly less depending on how much you work.) We could go halves in rent or some other arrangement depending on your living circumstances. If you’ve got your own #home, even better.
I have some emergency savings to get going. Can sort something out.
In #Melbourne, #Australia.
Might even consider moving states. Nobody here been keen to help so far.
The agencies and orgs don’t help disabled people. Tried them all. It’s been years.
If you’re on #Facebook, #Instagram, #Threads, etc please post and share this.
#housing #abuse #neglect #accommodation #mutualaid #homelessness #economy #MutualAidRequest #ChronicIlness #Neisvoid #MECFS #pwlc #Pwme #MyalgicEncephalomyelitis
@disability @disabilityjustice @mecfs @mutualaid @chronicillness @[email protected] @multipledisabilities @socialwork
@neisvoid
@[email protected]
@RAHU -
Guys what do I treat #Covid with? How do I get #Paxlovid? Does it work? This is a 3rd time infection but because of heavy brain fog I can’t remember the treatments or supplements used!😩
Already got #LongCovid!
Help please.
In Australia for Paxlovid reference. Most things closed today (Good Friday).
#ChronicIlness #Neisvoid
#MECFS #pwlc #Pwme@longcovid
@mecfs
@neisvoid
@chronicillness
@multipledisabilities -
Just wanted my birthday but not allowed
😖😭 -
The NIH study on myalgic encephalomyelitis/chronic fatigue syndrome that I volunteered for as a study patient was published recently & led to a lot of disappointment & some alarm in the patient community. The publication in Nature Communications did not discuss the central symptom of post-exertional malaise very much & now NIH has published a FAQ addressing this issue.
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#boost plz Situation terrible 😔
Abuse and not fed 2 days. Living on scraps. I don’t think can survive much longer.I’m fleeing #abuse and #neglect Denied basic needs for years.
If anyone wants to take me in & be my #carer you’re welcome to help.
I am #disabled but you really just need to do basics around a normal day. Bring me some food. Throw on some laundry.It would include carer allowance (not means tested, about 75$ week) carer allowance (up to about $500 a week if you aren’t working, or possibly less depending on how much you work.) We could go halves in rent or some other arrangement depending on your living circumstances. If you’ve got your own #home, even better.
I have some emergency savings to get going. Can sort something out.
In #Melbourne, #Australia.
Might even consider moving states. Nobody here been keen to help so far.
The agencies and orgs don’t help disabled people. Tried them all. It’s been years.
If you’re on #Facebook, #Instagram, #Threads, etc please post and share this.
#housing #abuse #neglect #accommodation #mutualaid #homelessness #economy #MutualAidRequest #ChronicIlness #Neisvoid #MECFS #pwlc #Pwme
@disabilityjustice
@disability
@mecfs
@mutualaid
@[email protected] @[email protected]
@[email protected] @multipledisabilities -
On Wedsnesday, I took the longest walk I've taken in some years, I have no idea how many. It was mostly flat ground, with benches for resting. I was able to manage due to years of immunoglobulin treatment and a small dose of Adderall. Very grateful for it.
#MEcfs #Disability #ChronicIlness #NEISvoid #Nature #Seals #Beach #Ocean
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I'm grateful to this Garmin watch because I would have no way to measure my calmness and sleep quality without it. I can't go based on how I feel, because sometimes I'm feeling stressed when it says I'm calm, or I'm feeling calm when it says I'm freaking the fuck out. I wake up feeling tired no matter what my body battery score is and no matter how well I slept. To the point where I wondered if it was even accurate, but it does match up with my overall experience, so it's accurate enough. I can see what works (guided meditations, sustained periods of breathwork) and what doesn't (wishing I were more calm, willing it to happen, only 3 breaths). I can see which meditations work better than others, and all kinds of semi-scientific processes. I highly recommend a good health watch and feel incredibly blessed to have this technology. (Garmin Vivoactive 4s.) Even so, it has taken an act of will to take calmness seriously.
4/4
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I just don’t know what to do anymore. I’m scared of everything. I‘ve got so much #trauma from #doctors. I’m scared my #GP will yell at me today and I won’t get a chance to get my treatment, scripts, go though very bad bloodwork and figure out what to or follow up referrals. My immune system is really screwed. I really need my IV. He’s dragging his heels. He yelled at me a few days after my mother had a stroke. That’s why I need to record this guy. How can I do this all in 10 minutes? The clinic won’t even let me email them to pass anything on in preparation. They denied it for 8 months but finally admitted it. I can’t go anywhere else because don’t have the energy. I’ve got no support. I ask one #disability advocate to help they say they don’t do that and pass me on to another one that sends me back. Don’t know what to do. Hospital doesn’t help. What the hell do I do? I’m not asking a lot. I just want treatment and people who should be helping me to stop treating me like shit.
#SevereME #ChronicIlness #LongCovid #PwME #MECFS #NEISvoid
#CoerciveControl #Abuse coming from everywhere.
@mecfs -
I had forgotten that Paul Berg, the Nobel Prize-winning biochemist who was instrumental in developing recombinant DNA and developing the first rules for how not to misuse it, was also a board member of the Open Medicine Foundation, dedicated to curing myalgic encephalomyelitis/chronic fatigue syndrome. Berg played "a significant role in moving the needle forward on ME/CFS," says OMF founder Linda Tannenbaum. Berg recently died at 96. #MEcfs #ChronicIlness #Genetics #Medicine
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CW: Illness, abuse, lack of help.
The road to hell is paved with paperwork Unsure about good intentions.
“You know that essay you wrote? Yeah, didn’t read it” or “You aren’t eligible.” You couldn’t have told me this?
How can there be any more forms left to fill in? Questions to answer?Are there any people left to contact? Underfunded #social #services to work through?
How can I rest? My #adrenals will burn out completely if I continue like this. I need to stop adding #hydrocortisone #steroids to get things done. I didn’t just suddenly wake up. This is VERY bad for me.
If only #help and #housing was #safe and #accessible. It’s hard enough for the #abled. I need an #advocate. More forms.
#ChronicIlness is a full time unacknowledged job. #Abuse is the sprinkles.
#severeME #pwme #mecfs #LongCovid #ChronicPain #Disability #NEISVoid
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CW: Illness, abuse, lack of help.
The road to hell is paved with paperwork Unsure about good intentions.
“You know that essay you wrote? Yeah, didn’t read it” or “You aren’t eligible.” You couldn’t have told me this?
How can there be any more forms left to fill in? Questions to answer?Are there any people left to contact? Underfunded #social #services to work through?
How can I rest? My #adrenals will burn out completely if I continue like this. I need to stop adding #hydrocortisone #steroids to get things done. I didn’t just suddenly wake up. This is VERY bad for me.
If only #help and #housing was #safe and #accessible. It’s hard enough for the #abled. I need an #advocate. More forms.
#ChronicIlness is a full time unacknowledged job. #Abuse is the sprinkles.
#severeME #pwme #mecfs #LongCovid #ChronicPain #Disability #NEISVoid
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CW: expressing grief about chronic illness
15 years with #fibromyalgia:
you get hope, and then you lose it again.
you get hope, and then you lose it again.
you get hope, and then you lose it again.repeat. apparently forever.