#ChronicIllness
"No one ever said to me this is grief"
Rae Katz interviews Emily Bazalgette, author of the Grief Sick newsletter.
https://raekatz.substack.com/p/this-is-grief-emily-bazalgette
#ChronicIllness #Grief #Disability #DynamicDisability #Disabled #MEcfs
One of my doctors is such an angel, i told her about all my symptoms today and she was like "wow, that really sucks". Yes it does! Thank you for acknowledging this. And she even gave me options for different treatments (just for her speciality obv) but it felt kinda empowering to decide what will happened to my body #chronicillness
Hello hour 12.
#migraine #MigraineBot #ChronicMigraine #ChronicPain #ChronicIllness
More quotes:
"Like most artistic organizations, Bread Loaf prides itself on being a community. But part of being a community is looking out for all members, including people who may be disabled, immunocompromised, or at higher risk of severe infections."
" 'When we don’t prioritize [disabled or chronically ill people] we’re saying that we’re OK with either leaving them out or with harming them.' "
My Medical bills are now overdue and I'll need to pay a % fee for each day it's late. Please help me get these bills paid! 😭
I need roughly $240 and will most likely owe for late fees.
Also, please, consider boosting as it helps tremendously, even if you cannot donate. ❤️
You can donate directly to my Pay-Pal@ AddriannaWing1
Many Thanks!
#mutualaid #MutualAidRequest #Community #Medicine #Health #Chronicillness #disability #LGBTQ #Mastodon #LGBTQ
#migraine day and I’ve used up all the medication days this month. So I guess today’s just a write-off.
#ChronicIllness #ChronicMigraine #ChronicPain
After 18 months, multiple doctor visits, two cortisone injections that didn't work, an xray, ultrasound, and MRI that showed multiple serious injuries, 12 weeks of physio with reports back to the doctor saying my progress was plateaued and not moving forward, I finally got a script written for some pain relief.
Although that pain relief is tapentadol SR, which is probably going to do next to nothing.
At least this is a step closer to getting something written up that might help when I call back in a week to let them know I'm still in pain.
#Disability #fibromyalgia #ChronicPain #ChronicIllness #Medical #Physio
"you don't look sick to me" but make it an asshole uni employee that stands between me and my bachelor graduation
#chronicIllness #invisibleDisability
On Saturday morning, I'm riding a #bicycle from San Francisco to Los Angeles (530 miles over 8 days) for the THIRD TIME. I'm doing this to raise money for the Arthritis Foundation.
I would be honored if you would have a look at my fundraising page to read my hilarious story and see the non-financial ways you can support me.
Thanks in advance.
Much love,
Adarsh
https://events.arthritis.org/index.cfm?fuseaction=donordrive.participant&participantID=291263
#BikeTooter #SFBA #Oakland #LosAngeles #Autoimmune #ChronicIllness #ChronicPain #Fundraiser
TW: Mild discussion of chronic health issues and grief.
I really miss being able to play MMO's, especially #WoW. I cannot cognitively keep up with worlds like that anymore and it makes me sads.
Everything feels like a job, a chore, a huge undertaking. When I can only spend about an hour a day playing a game (thanks, health)... that's just not it for me anymore. No more long play sessions.
Does anyone else out there feel this sort of grief related to #Illness?
@BootsChantilly Isn’t life a trip?
#chronicpain #chronicillness
Trying to get the strength to call my doctor's office for the 100th time this morning to try to get them to correct the specialist referral they sent for the 4th time because the specialist can't see me for what I need to see them for unless the doctor has written it on the referral even when I seem to know more about why I'm seeing them than the doctor does. (They wrote a referral for a diagnosis I already had 8 years ago...)Dealing with him is so frustrating that I usually end up in tears and then he tries to offer me psych meds. It's like, I'm sorry this isn't a brain imbalance, this might genuinely be a you problem.
#healthcare #healthcareInCanada #healthcareWhenPerceivedAsFemale #medicineWhenQueer #CanadianMedicine #FML #chronicIllness #chronicPain #mecdf #pots
My first day out in the world since my battle with myasthenia gravis started was daunting but also felt great.
#myastheniagravis #myasthenia #myastheniawarrior #chronicillness #disabled #accessibility
Having a high #pain day and feeling especially defeated
I've been incredibly focused on staying calm for half a week, using my watch as a guide, and prioritizing calming activities, meditation, analog, over digital obsessions, quieting my cacophonic mind.
And my reward? I've been experiencing even further cognitive decline and fatigue. I'm back to thinking through mud.
To avoid getting discouraged, I'm promoting the theory that my body and mind aren't used to operating on such low adrenal levels, and that after some time of feeling worse, I'll adjust, and things will start improving.
The struggle is the point. I can't stop struggling, because then what?
Update: after a long while on the phone with ISP (which triggered a #ChronicIllness #MECFS flare-up...) the internet seems back up. Now we just wait and see how long it'll stay up😑 #BellCanada #Tech
@shaknais
I realize folks are awkward, and don't know what to say, but "You don't look sick" is pretty ridiculous! 🙄
I hope folks will boost this cartoon ⬆️
Help educate folks so they'll stop saying it so much!
Like @maggiemaybe , sometimes I say "Good thing I don't look as bad as I feel!" with a smile 😉
Folks with disabling chronic illnesses often mask symptoms while doing errands. And folks see us only when we're well enough to leave the house.
Good Days and Bad Days (Living with Chronic Illness). 17 years ago, I was diagnosed with rheumatoid arthritis and fibromyalgia. I won't stop fighting. #blog #blogpost #writing #WritingCommunity #spoonie #chronicillness
Went to see the doc for my yearly checkup. Flu shot, tetanus booster. My rheumatoid arthritis has been worsening, so 3 vials of blood and complete blood work up on top of that. And it's not even 10 AM yet. 🤣#chronicillness #spoonie
I try to limit my posts about #ChronicIllness and invisible disabilities, I've got more interesting things to talk about.
But these past few weeks have kicked my ass something fierce.
Left work at 19 last night, fell into bed. Up at 7, roll into work 'round 8:45, and hope like hell I can make it through the day.
Thanks to the internet, I know there are folks who can relate, and who live through worse.
But damn, a day of not struggling once in a while would help.
Massachusetts ME/CFS and FM Annual Event
"ME/CFS: Changing the Narrative"
October 28, 1-3 PM Eastern Time (on Zoom)
Guest Speaker: Ed Yong
Fee is $10 for non-members
Full details: https://www.massmecfs.org/news-events/866-me-cfs-changing-the-narrative
Here's the latest News in Brief from the Science for ME forum, a summary of news for the week starting September 18.
This 2 part summary includes news articles, research, advocacy, coming events, and more:
https://www.s4me.info/threads/news-in-brief-september-2023.35197/#post-495378/
I made a gofundme for my friend who has recently been diagnosed with: Ehlers Danlos Syndrome Type III, Postural Orthostatic Tachycardia Syndrome, and Median Arcuate Ligament Syndrome. She was terminated from her job, and is looking for a new job that she can do remotely and that caters to her physical limits. Consider helping her out, if you please! Any amount helps.
Xoxo
#POTS #MALS, #ehlersdanlos #gofundme #chronicillness #geneticdisorder #support #philadelphia
Leave it to a chronically ill patient doing research to restore her own health and vitality to become the Rosetta Stone for one of the possible causes of #MECFS.
https://www.washingtonpost.com/health/2023/09/17/fatigue-cfs-longcovid-mitochondria/
#ChronicIllness #WomensHealth #CancerResearch #ChronicFatigue #LongCovid
Downside of today's internet install; the tech worker seemed *so* offended when I asked if he could wear a mask since I'm immunocompromised/chronically ill and didn't seem to understand why he should mask up. In the end he begrudgingly put one on but asked me to leave while he worked since he thought he'd catch my chronic illness🤔 #ChronicIllness #MECFS
Good news! If you've been following my medical and #healthInsurance nightmare, you might know I haven't had a doctor appointment since my family moved a couple months ago, and I wasn't expecting to see anyone until next month, which isn't good since I'm out of 3 prescriptions and can't refill them. Well, with help from someone from my insurance, I have an appointment tomorrow! Hopefully I can get refills, referrals to specialists, and help with my constant pain. #NEISvoid #chronicIllness
The Power of Peer Support for Queer and Disabled People | The Tyee https://bit.ly/48v3T7o #2SLGBTQ #Disabilities #ChronicIllness #cdnpoli @cdnpoli
Superb essay in Time on #ableism and justice. Cannot recommend highly enough. #disability #diversity #nonbinary #trans #queer #LGBTQIA #Jewish #Muslim #ageism #accessibility #chronicIllness This needs more hashtags, it’s for us all. Free article.
Pensées visuelle pour les badass d'@noscorpsresistants. 🥰
Free #myasthenia art to download and use as #stickers or #pins!
Want more? Check them out: https://ko-fi.com/i/IC0C6PHG8C
#myastheniagravis #funny #chronicillness #disabled #disability #mestinon #coffee #memes #autoimmune #medication #mg #myastheniawarrior #myasthenia_gravis #Myasthenia #art #stickerart #pinart
Smaller breakfast meals
So far i have stayed awake in the mornings! But its like two days of data so yeah
I'm also increasing how often i take iron to 3 times a week and eventually i'll end up at a doc again and ask them to check my vitamin levels and all. Some day. Probably
Thanks you for all your replies 🤎
It’s Saturday night, so that means refilling my pill organizer. It’s a total party, and when I say “party,” I mean pitty party.
10/
"Those with #disabilities face hurdles every day the able-bodied cannot fathom. If you are concerned that the #disabled are getting a “privilege” that is somehow “undeserved,” you are entitled to your opinion but please don’t act on it."
#chronicillness #Spoonie #Hiddendisabilities #Invisibledisability
@chronicillness @spoonies @disability @mecfs @longcovid
"Energy-Saving Self Care Cards" from Ricky Buchanan
https://www.energysavingselfcare.com/
The cards are not free but she does post some examples on the associated social media pages
e.g. https://www.facebook.com/energysavingselfcare/
#chronicillness #chroniclife #Spoonielife
#Spoonies #Spoonie #LongCovid @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @chronicillness
@spoonies
@disability
@longcovid
9/
"4. If someone would like to help those with #disabilities, there are better ways to do this than by leaving notes on someone’s car or making disdainful comments... You can spread the word that many disabilities are invisible and learn more about why disability and illness are often considered “invisible.”..."
#chronicillness #Spoonie #Hiddendisabilities #Invisibledisability
I am having a hard time getting my head around the fact that my sibling (who I have not seen since January 2020 because she also has been isolating and flying isn't safe for her) is about fly to FLORIDA with a friend to go to Disney. I'm the super-high risk one in the family, but she is also now high risk. She has been so careful and now apparently she has to do THIS for her mental health. Make it make sense.
#NEISvoid #Covid #ChronicIllness
(Not ME-specific)
Green Paper on Disability Reform: A Public Consultation to Reform Disability Payments in Ireland
@chronicillness
@spoonies
@disability
#Disabled
#Disability
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
Disability At Home:
"This website documents the ingenuity and creativity that caregivers and disabled people, including those with chronic illnesses, use every day to make home accessible..."
https://www.disabilityathome.org/
#Disability #chronicillness #chroniclife #Spoonielife #Spoonie @chronicillness
@spoonies
@disability @mecfs
4/
"But I was wrong. I was and am disabled. I got the [parking] placard and ended up using it every day because it was a life saver. I wished I had gotten it sooner when I needed it, long before I finally talked to my doctor about it."
#chronicillness #chroniclife #Spoonies
@chronicillness @spoonies @disability @mecfs @longcovid
3/
"My doctor signed it without question. I still was not comfortable with the term “disabled” then and I was still trying to pretend I could physically do what I was longer able to do. “Passing” as able-bodied was significantly easier than trying to live with disability (or so I thought at the time), and I was coasting on denial as long as I could."
@chronicillness @spoonies @disability @mecfs @longcovid #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
Fellow folks w/ chronic illness and/or anxiety, I'm curious, if you don't mind sharing, did you struggle w/ anger growing up - in the repressive sense, in that you weren't allowed to express it? Just had a great group talk about this w/ folks w/ chronic illness. They lovingly called me on my deep reticence to express anger, even my tendency to laugh while doing it, to buffer it. They really had my number, lol. Wondering if others do this, too.
🧵
"To Anyone Afraid to Get a Disabled Placard Because You're Worried About Judgment"
https://themighty.com/topic/disability/what-to-know-about-getting-a-disability-parking-placard/
@chronicillness
@spoonies
@disability
@mecfs
@longcovid
#chronicillness
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
#Butyoudontlooksick
#Invisibledisability
#Disabled
#Disability
#Hiddendisability
#Hiddendisabilities
1/
Also, it amuses the fuck out of me that this is a sex related injury.
The christians were right! Masturbation will end up in eternal torment!
..they just didn't warn me that it would involve so many medical tests.
#Disability #fibromyalgia #ChronicPain #ChronicIllness #Medical #Physio
8/
13. “I’m often so tired that even taking a deep breath is exhausting. I will even put off going to the bathroom for as long as possible because just walking the few feet from my couch to the restroom feels like walking a mile. My whole house feels like it triples in size on my bad days and everything is so far away.”
@chronicillness @spoonies #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll
Still extremely pissed that arsehole of a GP "accused" me of "driving my own medical care" today.
Well, that's because no one else is doing it, you prick! Least of all you.
MRI done.
Just as an aside, if you have piercings, check with the MRI tech before pulling them all out, because it mightn't be necessary.
Now, to get all these unnecessarily removed piercings back in...
#Disability #fibromyalgia #ChronicPain #ChronicIllness #Medical #Physio #Piercings #BodyMod
It's MRI Day!
Hopefully this will actually find what the problem with my shoulder is, and will lead to finally being able to do something about it so I can raise my arm again.
I guess I'd better start removing my piercings...
#Disability #fibromyalgia #ChronicPain #ChronicIllness #Physiotherapy #Medical
One more note on this: Most people with ME/CFS do not *look" sick at all (although some of us certainly do). I haven't seen this on mastodon but elsewhere I've seen comments saying she can't possibly be that ill because she looks so vibrant in these photos.
If I get 9 hours of sleep, take some Adderall, and the stars align, I can look vibrant for a little while too.
But it is a communications challenge, as photos transmit so much information.
Are #terpenes a real #pain relieving thing? Still legal in Oz.
#Myrcene has been suggested.
Microdosing #mushrooms of various kinds have also been suggested. Can’t get the magic kind without a prescription from a psychiatrist, but the rest are legal afaik. Do they work?
#ChronicPain
@chronicpain #NEISvoid #MeCFS #PwME @mecfs
#ChronicIllness @chronicillness
I'm dropping off an iron at someone's house today, because they posted that they need an iron, and for some reason I have two of them.
They just messaged to say they're feeling a little sick and have a slight fever, so if I still want to drop it off could I just leave it at their front door, but it's also ok if I don't want to do that.
This is exactly how it should be done. They give me information about whether they are sick, and I get to make an informed decision that manages my risk.
it is soooooo hard to wanna work when i feel so extremely much less like a corpse if i do not work!! fuuuuuck. if only the billz would stop for even a few months of the year so I can rest.
7/
8. “I’m on the verge of losing it at everyone because everything seems so loud, like it’s way louder than normal. And it’s so annoying it makes me angry. Like even someone drinking a drink seems like they have megaphone at their throat.”
@chronicillness @spoonies #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll
Why I invite you grocery shopping if I love you.
For many reasons, but right now, it's mostly because it's a mini adventure and dream for the future I can share even with #ChronicIllness and #disability.
Boost this. The public needs to "own" and protect this research. If everyone covets this it will make it more difficult for Big Pharma to disappear it.
#ChronicIllness https://mastodon.social/@noondlyt/111066765579869735
3/
"Now that I’m living with #chronicillness, I have to put serious consideration into much of what I choose to do throughout the day because it will have an immediate effect on Current Leslie, as well as risk having an impact on Future Leslie."
#chroniclife #Spoonielife #Spoonie @chronicillness @spoonies @mecfs @longcovid
2/
4. Deciding how to respond to “I hope you feel better soon!”
5. Deciding if you’re actually able to do ‘The Thing.’
6. Deciding how much social interaction you can handle.
7. Deciding when to ask for help.
#chronicillness #chroniclife #Spoonielife #Spoonies #Spoonie @chronicillness @spoonies @mecfs #MyalgicEncephalomyelitis #MEcfs #CFS #PwME @longcovid #LongCovid #PwLC #postcovid #postcovid19 #LC
🧵
"7 Challenging Daily Decisions When You
Live With Chronic Illness
https://themighty.com/topic/chronic-illness/challenging-daily-decisions-with-chronic-illness/
Here are the 7 headings. The article itself expands on these
1. Deciding if you’re going to take a shower.
2. Deciding where to spend and save your spoons.
3. Deciding how to answer “How are you?”
#chronicillness #chroniclife #Spoonielife #Spoonies #Spoonie @chronicillness @spoonies @mecfs
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC
1/
This is HUGE.
This should be HUGE.
This must be HUGE.
make this HUGE
This is an amazing breakthrough for chronic illness and looks promising as a potential cure and reversal for MS, Crohn's, and many many more.
Making a list right here for #NEISvoid #disability #ChronicIllness people who haven't gotten invites to the #Bluesky app yet. It isn't perfect (no private account setting) and it isn't a substitute for Mastodon, but it might help people find their communities.
Also welcome to reply to this are any marginalized people that don't feel safe on Twitter or other spaces. #BIPOC #Indigenous #LGBTQ #Queer and others.
As people get invite codes, this could be a place to find people who need them.
Therapists of all sorts assume the chronically ill, poor, and disadvantaged need to improve their sense of self worth to improve their condition. Why do very few analysts, policy makers and society in general realize that it is they who need to see the worth of the “unproductive”? We know we’re worthy. We wish others thought so too. #disability #chronicpain #chronicillness #disabilityjustice #socialsecurity #votingmatters
8/
"It’s discouraging and isolating, especially when you feel that you can’t make plans simply because you do not know that you’ll be able to carry them out."
@chronicillness @spoonies @mecfs @longcovid
#chronicillness #chroniclife #ChronicPain
#Spoonielife #ChronicIllnesses
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC
7/
"You may have to start cancelling plans, which can leave you feeling flaky and unreliable, especially when those plans were with someone that saw you on a good day recently."
@chronicillness @spoonies @mecfs @longcovid
#chronicillness #chroniclife #ChronicPain
#Spoonielife #ChronicIllnesses
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC
6/
"Fluctuating conditions are also shockingly unpredictable, especially at first, when you don’t know what will trigger a flare or are not yet experienced enough to recognize the warning signs."
#chronicillness #chroniclife #ChronicPain
#Spoonielife #ChronicIllnesses
@chronicillness @spoonies @mecfs @longcovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC
Do you have ME/CFS or Long Covid, either formally diagnosed or suspected? Fill out the survey at https://meandmore.net/survey + share it on social media and with your support groups and others
With your help we hope to inspire future research.
from https://instagram.com/sunnivainnstrand for a survey by https://instagram.com/m.e_and_more/