Non verbal signs of pain: 😟 Facial expressions 🧍‍♀️Body posture. (Pain patients tend to protect their body by holding their limbs close or move unnaturally in an attempt to protect their body) 😭 Crying and sounds of distress Withdrawal from activity or into silence 🤬 Mood changes - quick to anger, aggression, irritability, and agitation 😕 Confusion 👐 Hand movements can show distress or pain 🥵 Excessive sweating 🔗 MySeveralWorlds.com #PainAwareness #PainCounts #LifeWithPain #CPP #ArthritisAwareness #ArthritisStrong #MySeveralWorlds #SuicideAwareness

Non verbal signs of pain
*Face expressions
*Body posture
*Crying and sounds of distress
*Withdrawal from activity or to silence
*Mood changes: quick to anger, aggression, irritability & agitation
*Confusion
*Hand movements show distress/pain
*Excessive sweating
🔗
MySeveralWorlds.com
#PainAwareness

How Does Antiphospholipid Syndrome Affect The Body? (Beyond the Blood to Major Organs) How does Antiphospholipid Syndrome affect the body? Whilst APS is a blood clotting disorder, it is also a systemic autoimmune disease.

"Skin-related manifestations are common & may be the 1st signs of #APS. 40% of APS pts who hv #cutaneous manifestations go on to develop multisystemic #thrombotic events which underscores the need to be extra vigilant" buff.ly/XofExpO
@achronicvoice.com
#AntiphospholipidSyndrome

I sure know this pattern. 1pm to 5pm are what I call 'magic hours' in my home when I can think more clearly. Housebound since 2015. IF I make it outside the house I have around 2 hours tops.

Scrappy the marbled black and white cat for #Caturday
Scrappy was a black cat, whose coat started getting white at the age of 7, due to vitiligo, which is a genetic mutation causing skin or fur to lose its natural pigment.

"Listen to some music Get well soon! Do you really want to take all those meds? You don't look sick Try some B12 Get outside for a walk I get tired too! Have you tried yoga? Your bloodwork is normal I'd love to sleep all day! Just push through it You're exaggerating You were ok yesterday Think yourself lucky, it could be worse!" Credit ©️ Chantel Rallmen #MySeveralWorlds #UnsolicitedAdvice #MyChronicLife

"Listen to some music
Get well soon!
Do you really want to take all those meds?
You don't look sick
Try some B12
Have you tried yoga?
Your bloodwork is normal
I'd love to sleep all day!
You were ok yesterday
It could be worse!"
©️ Chantel Rallmen
#MySeveralWorlds #UnsolicitedAdvice #MyChronicLife

Reliving Heartbreak: Life With A Chronic Illness – Living with chronic illness is heartbreaking. Heartbreak that is repeated again and again as its worst moments are replayed over and over.

"The true heartbreak of living with chronic illness is being forced to relive the worst moments of it over and over again." via @serenebutterfly.bsky.social at My Brain Lesion and Me
🔗
Read it: www.brainlesionandme.com/reliving-hea...

#Spoonie #ChronicIllness #ChronicPain #Disability #ChronicLife

Name changes for Sjögren’s, axial spondyloarthritis ‘a big deal’ for researchers, patients “Ankylosing spondylitis”? “Sjögren’s syndrome”? These terms may soon take on an antiquated feel not unlike “shell shock” or “consumption,” as both...

Name changes for #AxialSpondyloarthritis and #Sjogren's a big deal! #axSpA has come to encompass the spectrum of disease formerly divided into non-radiographic vs. radiographic axial SpA.
🔗
buff.ly/3CISx4v

#AnkylosingSpondylitis #nrAxSpA

@asintfed.bsky.social told @gohealio.bsky.social

Flashback to March 7, 2025 when I filed for disability in Taiwan - just over a year ago. And now here I am in Canada having done so again a year later. "I filed for #disability in Taiwan on Monday. I live with severe #AxSpA and #PsA. I also have fibromyalgia, MECFS, and #APS. My doctor said he supports me, he sees my low quality of life, and will do his best for me, but the chances of getting assistance are quite low." Credit: Carrie, #MySeveralWorlds

Flashback to March 7, 2025 when I filed for disability in Taiwan. Now here I am in Canada having done it again.

"I filed for #disability in Taiwan. I live with severe #AxSpA and #PsA. I also have fibromyalgia, MECFS, and #APS. My doc supports me but the chances are low."

Carrie, #MySeveralWorlds

Sometimes, Physical Pain Isn’t the Worst Part About Chronic Illness When we think of pain, physical pain often comes to mind first. But sometimes, chronic pain isn't the worst part about chronic illness.

@achronicvoice.com The Surprising Thing About Chronic Pain buff.ly/2Lvfo5n I’ve lived w. #ChronicIllness for 20 years & have gone through flares that are so disabling that I imagine this is what hell feels like. IMO, one cannot deal w. #ChronicPain when they’re defeated mentally.

#Inflammation & #BloodClots
"Diseases that cause chronic inflammation can lead to damage to the clotting process which can block blood flow in the veins. Common inflammatory diseases include
Lupus
Cancer
Cystic fibrosis
Asthma
Psoriasis
MS
Diabetes
Infection
IBD"
🔗
thrombosis.org/2024/10/infl...

A night of nostalgia proves compassion counts with chronic illness Witnessing acceptance and inclusion onstage at a multi-act concert was proof that compassion counts, writes columnist Kerry Wong.

The New Edition Way Tour was beyond anything I'd anticipated ... but for so much more than just the music! In this week's Sarcoidosis News column, I share what made it so emotional for me.
🦋
sarcoidosisnews.com/columns/nigh...
#ChronicIllness #disability #PatientExperience #sarcoidosis #SpoonieSky

‘Silence can be incredibly hurtful’: How to talk to someone about their chronic illness While it may feel impolite to ask after someone’s ill-health, for those living with chronic conditions never being asked can feel ruder still

"Silence can be incredibly hurtful’: How to talk to someone about their #ChronicIllness

While it may feel impolite to ask after someone’s ill-health, for those living with chronic conditions never being asked can feel ruder still."
🔗
www.theguardian.com/lifeandstyle...

What's it Like to Live with a Heart Rhythm Disorder? I live with PSVT — a heart rhythm disorder/arrhythmia. Read about my personal experiences living with this heart condition, and get tips to cope.

I got heart palpitations every 3-4 days - I had many trips to ER. It isn’t dangerous within normal range, but I was unable to pay attention to anything else. After every rhythm reset I felt fatigue wash over me. I stopped working full-time. @achronicvoice.com
🔗
www.achronicvoice.com/2018/10/04/h...

A color photo of a trio of red, brown & white, speckled Finches perched on a branch in a horizontal row with their backs facing the camera. The capture was taken in Chicago, IL, in the Autumn of 2025. The photo is used with permission, free from copyright by photographer Waqar Younis. The background is solid green.

#BirdOfTheDay
#ECK
( #Speckled )

Red Finches in Chicago, Illinois during Autumn, 2025.

#Finches #Birds #Birdsky #Wildlife #Photography
#BirdPhotography
#BirdWatching
#ArtInNature

“Chronic pain prevents me from concentrating… Then there are the really bad days—where my bones feel like glass and my nerves like molten wires. Where the pain is so much I want to cry… I can’t move or get out of bed—they’re completely debilitating.” https://buff.ly/WRA9Xlg #ChronicPain #RareDisease

Healing isn't always 'love and light'-it's often 'Holy F*ck and WTF' too. XO, Dr. Jen Credit @drjenwolkin #TraumaTherapy #Healing #MySeveralWorlds

Healing isn't always 'love and light'-it's often 'Holy F*ck and WTF' too.
XO, Dr. Jen

Credit @drjenwolkin

#TraumaTherapy #Healing #MySeveralWorlds

Disabled people, self management, and 'being controlling' Disabled people are often seen as demanding and controlling - here I look at an example of why this might be, and what is really going on.

"Disabled people & 'being controlling'
"When you interact w. a disabled person who is 'being demanding' - look again. Maybe all they are asking for is basics that will allow them to function, to be part of society, & to not get worse."
🔗
www.stickmancommunications.co.uk/post/disable...
#disability

It is estimated that nearly 10 million adults in #Taiwan aged 18+ are affected by #pain. The 3 most common types reported are muscle soreness, headache & joint pain, according to the latest survey on pain perception & behaviors in Taiwan. #ChronicPain
🔗
english.news.cn/20240904/ad8...

"I wish able bodied people understood that being forced to rest and lay around because of sickness isn't the same as them getting to rest. It's not enjoyable." Credit: Han @spoonfulofhan #MySeveralWorlds #ChronicTruths #pwME

"I wish able bodied people understood that being forced to rest and lay around because of sickness isn't the same as them getting to rest. It's not enjoyable."

Credit: Han @spoonfulofhan

#MySeveralWorlds #ChronicTruths #pwME

These communication barriers include, but are not limited to: * Noisy and chaotic spaces * Rushed interactions with no time to process * Being dismissed, disbelieved or talked over * Cognitive overload under pressure * Having to constantly repeat or explain our needs * A lack of visual or written information for others to process * Assumptions, stereotypes & stigma * Being spoken about & not to Just to name a few Credit: HiAlert #MedicalGaslighting #MentalHealthMatters

Communication barriers include:

* Noisy, chaotic spaces
* Rushed interactions & no time to process
* Being dismissed, disbelieved, talked over
* Cognitive overload under pressure
* Lack of visual or written info to process
* Stereotypes & stigma
#MedicalGaslighting #MentalHealthMatters

Very cool!

Invisible, incurable, constantly in pain: This is what living with fibromyalgia is like Imagine doctors insisting that you are fine, when your body is engulfed in pain. Four fibromyalgia patients tell CNA Insider about their struggles with this invisible illness and how they draw strengt...

We rarely see #fibromyalgia in the news here: #Singapore

"No two patients are the same. Clara likened her #pain to numbness crawling from her neck. Daisy struggles with #BrainFog. Jin Jie endures a deep-seated ache. Rina, a stabbing sensation.

www.channelnewsasia.com/cna-insider/...

We are pushing through this Canadian winter after tropical Taiwan. 💪

GUIDE TO CHAIRS Ehlers Danlos Edition 🪑A comfy position doesn't exist 🪑I'm gonna need a muscle relaxer 🪑Nap time 🪑Good thing I'm flexible 🪑POTS episode 🪑Good thing I'm flexible 2.0 🪑 Spinal instability 🪑 are spines supposed to be this straight? 🪑 Fold me like a taco 🪑 I forgot how humans sit 🪑 Torture device 🪑 I'm gonna need help getting up Credit: fb: what's poppin? #EDSmemes #EDS #EhlersDanlos #MySeveralWorlds

CHAIRS
Ehlers Danlos Edition
🪑 A comfy position doesn't exist
🪑 Need a muscle relaxer
🪑 Nap time
🪑 I'm flexible
🪑 POTS episode
🪑 Spinal instability
🪑 Are spines supposed to be this straight?
🪑 Fold me like a taco
🪑 forgot how humans sit
🪑 Torture device
🪑 Need help getting up
#MySeveralWorlds

Chronic Noise Exposure Led to Parkinson's Disease Symptoms in Mice | The Scientist Noise as loud as 85 to 100 decibels over time led to irreversible motor defects and loss of dopamine neurons in a mouse model of pre-symptomatic Parkinson’s disease.

"Chronic noise exposure may do more than harm your hearing.

New research linked repeated loud sound to dopamine neuron death and movement issues in mice, offering insight into how environmental noise could contribute to #ParkinsonsDisease."
🔗
bit.ly/3Xhya5f

It is my pleasure always!

Fresh off a 14 hour flight from Taiwan to Canada on Dec 28 2025 in my wheelchair with two Asian housecats and a few things that represent my 23 years in Asia.

My friend helped me leave my ex and helped me and my cats onto the flight that got me to safety.

The kind porter in Toronto who helped me with my cats and luggage.

Three months ago, I saved my life. I fled Taiwan in my wheelchair with my cats. I left an intolerable home situation with no support/care. I packed 23 years into 12 boxes in 25 days. I am sheltering with my parents in Canada at 51 years old with health on fire. Hoping safety means I can rebuild. 💪

Autoimmune Hangover (noun) an increase in #autoimmune symptoms caused by overexertion or an increase in stress, often following a busy weekend, holiday, or travel. Synonym: spoonie hangover Credit: @shannanemrow #MySeveralWorlds #AutoimmuneDisease #Spoonie

Autoimmune Hangover (noun)
an increase in #autoimmune
symptoms caused by
overexertion or an increase in stress, often following a busy weekend, holiday, or travel.
Synonym: spoonie hangover

Credit: @shannanemrow

#MySeveralWorlds #AutoimmuneDisease #Spoonie

👉 I always feel like I am too much and spend half my appointment apologizing! ❓What about you? "You need to know that competent, smart people are routinely made to feel stupid & "dramatic" in medical situations. It has nothing to do with how smart you are or how valid your medical issue is. It's a systemic problem that is happening to lots & lots of other people too." Credit: Dr. Glenn Patrick Doyle #MedicalGaslighting #MedicalTrauma #MySeveralWorlds

"Competent, smart people are routinely made to feel stupid & "dramatic" in medical situations. It has nothing to do with how smart you are or how valid your medical issue is."
@drdoylesays.bsky.social

#MedicalGaslighting #MySeveralWorlds
#MedicalTrauma

“The whole thought process of a #chronicallyill person is vastly different from a “healthy” person… they have no idea what it’s like—there may be 20 or more decisions you need to process before you can walk out your door.”
🔗
buff.ly/46vXYyv

@KimberlyJPenix

#Spoonie