Lmst

Presented without context.

#disability #disabilities #ally #a11y #access #accessibility #funny #ChronicIllnesses

Greg Davies and "Little" Alex Horne in royal red and gold Baroque or maybe Rococo-style thrones, on the set of the show Taskmaster. God/s only know which gd series (season). Greg waves a prompt card nearer Alex. The captions read "'Stop. Hating. People. With. Disabilities."

Some low-energy products for washing one's hair

From: May 2025 Caregiver Call Summary

Links:
https://www.walgreens.com/store/c/walgreens-rinse-free-shampoo-cap/ID=prod6293401-product

https://www.medline.com/product/ReadyBath-RinseFree-Shampoo-and-Conditioning-Caps/Z05-PF66410?question=Shampoo%20cap&

https://www.walgreens.com/store/c/cleanis-aqua-pre-moistened-wash-glove,-shampoo/ID=prod6187681-product

https://www.cvs.com/shop/cvs-health-pre-moistened-no-rinse-shampoo-glove-prodid-920210?skuId=920210&cgaa=QWxsb3dHb29nbGVUb0FjY2Vzc0NWU1BhZ2Vz&gStoreCode=R10694&gQT=1

Hashtags:
@chronicillness
@spoonies
@mecfs
#ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #POTS @pots @fibromyalgia
#Fibromyalgia #Fibro #FMS
#chronicillness
#chroniclife
#Spoonielife
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

Washing one’s hair if one has energy and arm limitations can be very difficult. A call participant mentioned Shampoo Caps that one places over the hair, rubs in, removes the cap and hair is cleaned – no rinsing needed. Some of these are available with fragrance free shampoo

(They said they tried both of these. The Medline was what the hospital provided for their partner.)

https://www.walgreens.com/store/c/walgreens-rinse-free-shampoo-cap/ID=prod6293401-product

https://www.medline.com/product/ReadyBath-RinseFree-Shampoo-and-Conditioning-Caps/Z05-PF66410?question=Shampoo%20cap&

They also told us there are wash gloves with similar shampoo – though they haven't tried this.

https://www.walgreens.com/store/c/cleanis-aqua-pre-moistened-wash-glove,-shampoo/ID=prod6187681-product

https://www.cvs.com/shop/cvs-health-pre-moistened-no-rinse-shampoo-glove-prodid-920210?skuId=920210&cgaa=QWxsb3dHb29nbGVUb0FjY2Vzc0NWU1BhZ2Vz&gStoreCode=R10694&gQT=1

"The doctors are not OK"
https://mecfs.substack.com/p/the-doctors-are-not-ok

Blogpost arguing that doctors may not be willing to admit in a consultation they don't understand a patient's condition/symptoms/etc & instead not treat them well (e.g. gaslighting them) because of the way they themselves were trained

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

The doctors are not OK.
Shame, medical training, gaslighting, and cycles of abuse.
K. Johnstone
Jun 03, 2025
A few days ago I listened to a wonderful podcast, Long Covid MD podcast #50: Ask The Patient - Why Medicine Still Doesn't Listen, with Dr Zed Zha. In it, Dr Zha told a story about her time as a medical student working in a hospital. A senior doctor asked a question and the student replied honestly: "I don't know". The senior doctor responded by humiliating the student, and later wrote in the student’s assessment that she was not fit to work in that particular area of medicine.

Dr Zha recalled feeling intensely ashamed in that moment. The feelings of being shamed were deeply upsetting, even traumatic, and it seems that this experience of being shamed was a common one in medical training. It was even noted that medical training is based on shame.

🧵
Medscape (widely read by health professionals):

‘Symptom Invalidation’ in Clinically Uncertain Diagnoses Can Leave Lasting Mental Health Harms

https://www.medscape.com/viewarticle/symptom-invalidation-clinically-uncertain-diagnoses-can-2025a1000ewd
(may require free registration)

Thought this was good & interesting.

@chronicillness
@spoonies
#lupus @lupus #neisvoid
#chronicillness #hiddenillness #invisibleillness #ChronicIllnesses
#Spoonies #ChronicallyIll
#POTS @pots #IBS @ibs fibromyalgia@a.gup.pe
#Fibromyalgia #Fibro #FMS @longcovid #LongCovid @mecfs #MEcfs
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Medscape Medical News > Features
‘Symptom Invalidation’ in Clinically Uncertain Diagnoses Can Leave Lasting Mental Health Harms
Tara Haelle
June 03, 2025

I haven't read the book but the blog post is interesting enough itself

https://meglobalchronicle.wordpress.com/2023/12/23/the-words-that-saved-me/

"It is about my experiences and the emotional journey of finding hope and courage whilst living with severe chronic illness."

Hashtags:
@chronicillness
@spoonies
@disability
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
@mecfs
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME

Cover for poetry book with this text:

THE WORDS THAT SAVED ME
A POETRY COLLECTION
SARAH MOZER

Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds

https://www.eurekalert.org/news-releases/1074887

Image is a screenshot from June 2025 AMMES e-newsletter

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

A photo of somebody in nature with their head down
with this text:

Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds
A study involving over 3,000 participants – both patients and clinicians – found that these misdiagnoses (sometimes termed “in your head” by patients) were often associated with long term impacts on patients’ physical health and wellbeing and damaged trust in healthcare services.

Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds

Even though I haven't been able to paint due to the #Drought and #ChronicIllnesses I have been able to get these 16 Hastati from #AventineMiniatures ready to join the paint queue. Rain is finally here though.
#MiniaturePainting #Miniatures #WiP #SAGA #AgeOfHannibal #Pyrrhic #PyrrhicWar #Roman #RepublicanRoman #RomanRepublic #3rdCenturyBC #SamniteWar

Przez wiele lat, na innych lekach, nie mogłam się szczepić nawet na grypę. Zmienili mi leki, covid (ja już 7 dawek) wymusił dokładne przebadanie i oto dziś wyszłam z gabinetu z oficjalnym glejtem
Twoja stara jest fanatyczką szczepień.

#SM #StwardnienieRozsiane #MultipleSclerosis #ChronicIllnesses

Back from #mpn specialist, in an awful mood because she said one of my trigger phrases "that shouldn't be happening", no shit sherlock. They have stopped my meds because of all the bleeding events and booked some scans and an endoscopy to look around for damage and/or clues as to what is happening. No progress on #painmanagement because that would be too useful. Already used all my #spoons for the day. #mecfs #ChronicFatigueSyndrome #ChronicIllnesses

Mental health junk journal entry. Acrylic and water color. poem from a Tumblr post.by Rollingblakely https://www.tumblr.com/rollingblakely/782845491714162689?source=share
(I'm leaveslikeglitter on Tumblr)

I don't post the tears at 2am.
When my body screams
And no one answers.
I don't post the meds, the mess,
The grief in grocery aisles.

I post the flowers.
But I grow them
From dirt
You'll never see.

#poem #poetry #medicaltrauma #chronicillnesses #painting #floral #flowers #handpainted #acrylicpainting #watercolor #chronicpain

This is for the #ChronicallyFabulous crowd:

Ever since the creators of the Medisafe android app converted to a freemium payment model in November, I've been working on a med tracking app to replace it for me and my partner. It's just for android, I have no plans on learning iOS dev. It's maybe 90% of the way to a MVP.

It let's you track as many meds as you need, set multiple scheduled reminders per med (for those complicated scenarios), fully control your own data, and a few other nice quality of life things. The intent is to release it as #FOSS.

I'm no mobile dev, nor a graphic designer. I'm just doing what I can. TBH getting this project past the finish line has been less fun than going to the dentist, but I want to finish it.

Does this interest anyone? Should I try to share updates? Is this something you would he interested in supporting technically, creatively, or financially?

#ChronicIllnesses #AndroidDev

:boost_requested: :heart_cyber:

"The Fight to Be Believed: Long COVID’s Toll on Black Americans"
by Rebekah Sager/AP

Black people made up about 32% of long COVID cases, one study found, but are “not being taken as seriously,” said one patient.

https://capitalbnews.org/black-americans-long-covid-trump-cuts/

#SarsCoV2 #CovidIsNotOver #LongCovid #MedicalRacism #ChronicIllnesses

@Venicone There's also the days where my #ChronicIllnesses keeps me exhausted in bed, then I fire up #Satisfactory and wander round just adding stuff to the forever growing planet factory.

"'Twirl With Me, Mama!' by Melissa Beardall & Rebecca Nichols is a moving children’s book that shines a compassionate light on families living with #chronicillness ."

https://hazymaybooks.com/about-the-book/

See next post for more information on this book

@chronicillness
@spoonies #parenting #chroniclife #ChronicPain #Spoonielife
#hiddenillness #invisibleillness #ChronicIllnesses #Spoonies #Spoonie
#ChronicallyIll @mecfs
#MEcfs @longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #POTS @pots

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Drawing of a young girl using a stethoscope on her mother who is in bed.
Has the following text:
"Mama says she sick. She doesn't look sick to me. She isn't coughing or sneezing like I do when I'm sick. "You need to go to the doctor so you can get better," I say. But mama isn't getting better.

Recap of professionally-facilitated support group "Surviving Invalidating Relationships & Experiences"

https://batemanhornecenter.org/wp-content/uploads/2025/03/20250311-Support-Group-Recap.pdf

"by becoming sick with a #chronicillness we become a minority...based on the prevalence rate of these conditions"

#Spoonies @longcovid
#LongCovid @mecfs
#MEcfs #CFS #PwME @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #POTS @pots @chronicillness
@spoonies
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

How Ascendance of a Bookworm depicts the challenges and triumphs of chronic illness

Myne's fight to manage her illness--including social and financial barriers to care and the importance of a support structures--have become a cornerstone of the story.

https://www.animefeminist.com/ascendance-of-a-bookworm-chronic-illness/

#anime #disability #ChronicIllnesses #isekai

My friend Burgandy just uploaded a new video about her life with multiple sclerosis. Join us for a personal vignette in the life of the strongest person I know.

Subscribe for more!

#MultipleSclerosis #ChronicIllnesses

https://youtu.be/o1yiN77HCoE?si=SZmo3x2zi34g7i_D

Blogpost giving some tips on how to maximise the usefulness of appointments with doctors.

https://www.carermentor.com/p/how-to-close-patient-doctor-disconnects

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