"Being stuck in bed with #ChronicIllness is NOT the same as a healthy person tired in bed. It may sound and look the same but it is NOT the same. Choosing to stay in bed & being forced to stay in bed are completely different physically & mentally."
@invisiblysicklala
#MySeveralWorlds #ChronicTruths
@invisiblysicklala
#MySeveralWorlds #ChronicTruths
August 28, 2026 at 2:52 PM
"Being stuck in bed with #ChronicIllness is NOT the same as a healthy person tired in bed. It may sound and look the same but it is NOT the same. Choosing to stay in bed & being forced to stay in bed are completely different physically & mentally."
@invisiblysicklala
#MySeveralWorlds #ChronicTruths
@invisiblysicklala
#MySeveralWorlds #ChronicTruths
ACTIVITY
Going out for a walk - 1 Day
Cleaning your room - 6 Hours
Cooking a meal - 2-3 Hours
Doing laundry - 4 Hours
Medical Admin - 8 Hours
Having visitors - 1-2 Days
Running errands - 2 Days
Going out with friends - 4 Days
Credit Unknown
#MySeveralWorlds #Pacing #BoomAndBust #PEM #pwME
Going out for a walk - 1 Day
Cleaning your room - 6 Hours
Cooking a meal - 2-3 Hours
Doing laundry - 4 Hours
Medical Admin - 8 Hours
Having visitors - 1-2 Days
Running errands - 2 Days
Going out with friends - 4 Days
Credit Unknown
#MySeveralWorlds #Pacing #BoomAndBust #PEM #pwME
August 22, 2026 at 4:18 PM
ACTIVITY
Going out for a walk - 1 Day
Cleaning your room - 6 Hours
Cooking a meal - 2-3 Hours
Doing laundry - 4 Hours
Medical Admin - 8 Hours
Having visitors - 1-2 Days
Running errands - 2 Days
Going out with friends - 4 Days
Credit Unknown
#MySeveralWorlds #Pacing #BoomAndBust #PEM #pwME
Going out for a walk - 1 Day
Cleaning your room - 6 Hours
Cooking a meal - 2-3 Hours
Doing laundry - 4 Hours
Medical Admin - 8 Hours
Having visitors - 1-2 Days
Running errands - 2 Days
Going out with friends - 4 Days
Credit Unknown
#MySeveralWorlds #Pacing #BoomAndBust #PEM #pwME
August 14, 2026 at 7:59 PM
Learning to pace with #chronicillness isn’t about doing less—it’s about doing differently. In this post, I’m sharing the simple weekly check-in that helps me prevent burnout, plan around unpredictable energy, and stay grounded in what my body actually needs.
#lifewithchronicillness
bit.ly/46Gbm4R
#lifewithchronicillness
bit.ly/46Gbm4R
How to Catch Yourself Before You Burn Out: Pacing With Chronic Illness Made Simple
Learn simple ways to pace with chronic illness using a weekly self-check-in to manage energy, prevent burnout, and plan with awareness.
bit.ly
October 7, 2025 at 6:24 PM
Learning to pace with #chronicillness isn’t about doing less—it’s about doing differently. In this post, I’m sharing the simple weekly check-in that helps me prevent burnout, plan around unpredictable energy, and stay grounded in what my body actually needs.
#lifewithchronicillness
bit.ly/46Gbm4R
#lifewithchronicillness
bit.ly/46Gbm4R
😣 Spent the day masking at work.
🛏️ Spent the evening bedrotting // doing aftercare to recover.
🤞✖️🔥 Hoping tomorrow doesn't bring a flare.
#Lifewithchronicillness #SpoonieSky #Migraine
🛏️ Spent the evening bedrotting // doing aftercare to recover.
🤞✖️🔥 Hoping tomorrow doesn't bring a flare.
#Lifewithchronicillness #SpoonieSky #Migraine
January 15, 2025 at 6:00 AM
😣 Spent the day masking at work.
🛏️ Spent the evening bedrotting // doing aftercare to recover.
🤞✖️🔥 Hoping tomorrow doesn't bring a flare.
#Lifewithchronicillness #SpoonieSky #Migraine
🛏️ Spent the evening bedrotting // doing aftercare to recover.
🤞✖️🔥 Hoping tomorrow doesn't bring a flare.
#Lifewithchronicillness #SpoonieSky #Migraine
I'm trying to tread water and stay afloat, but the waves of the world are crashing closer. #LifeWithChronicIllness
January 29, 2025 at 12:21 AM
I'm trying to tread water and stay afloat, but the waves of the world are crashing closer. #LifeWithChronicIllness
Trying to find solutions to problems no one wants to help us with.
It is not easy when the solutions you really need aren't available in your area (as in only available in Copenhagen, our capital)
#chronicillness #chronicpain #mecfs #fibromyalgia #spoonielife #pwme #lifewithchronicillness
It is not easy when the solutions you really need aren't available in your area (as in only available in Copenhagen, our capital)
#chronicillness #chronicpain #mecfs #fibromyalgia #spoonielife #pwme #lifewithchronicillness
June 25, 2025 at 9:37 AM
Trying to find solutions to problems no one wants to help us with.
It is not easy when the solutions you really need aren't available in your area (as in only available in Copenhagen, our capital)
#chronicillness #chronicpain #mecfs #fibromyalgia #spoonielife #pwme #lifewithchronicillness
It is not easy when the solutions you really need aren't available in your area (as in only available in Copenhagen, our capital)
#chronicillness #chronicpain #mecfs #fibromyalgia #spoonielife #pwme #lifewithchronicillness
This ME/CFS Awareness Month, we’re creating a community video to show what life with #MECFS or #LongCOVID really looks like. Share your truth—photos, poems, video, or art—by May 11. It matters 💙
Submit here: loom.ly/nhkhUTU
#PatientVoice #LifeWithChronicIllness
Submit here: loom.ly/nhkhUTU
#PatientVoice #LifeWithChronicIllness
Kudoboard for ME/CFS Community | Kudoboard
Kudoboard is an online replacement for the greeting card that you pass around and sign!
loom.ly
April 28, 2025 at 1:51 PM
This ME/CFS Awareness Month, we’re creating a community video to show what life with #MECFS or #LongCOVID really looks like. Share your truth—photos, poems, video, or art—by May 11. It matters 💙
Submit here: loom.ly/nhkhUTU
#PatientVoice #LifeWithChronicIllness
Submit here: loom.ly/nhkhUTU
#PatientVoice #LifeWithChronicIllness
Another way to make your feed user friendly to those with screen readers is to capitalize each word in a tag, such as #LifeWithChronicIllness ...then the screen readers read each word, not just nonsense.
a cartoon of mary poppins with the words supercalifragilisticexpialidacious above her
Alt: a cartoon of mary poppins with the words supercalifragilisticexpialidacious above her
media.tenor.com
November 11, 2024 at 1:24 PM
Another way to make your feed user friendly to those with screen readers is to capitalize each word in a tag, such as #LifeWithChronicIllness ...then the screen readers read each word, not just nonsense.
November 11, 2024 at 1:22 PM
Yea, neither my brain nor body wanna work today.
Highly unlikely I'm gonna stay functional long enough to watch TAR live tonight. Will have to do my usual catch-up post in the morning tomorrow.
(by morning, I of course mean mid-afternoon)
#LifeWithChronicIllness
Highly unlikely I'm gonna stay functional long enough to watch TAR live tonight. Will have to do my usual catch-up post in the morning tomorrow.
(by morning, I of course mean mid-afternoon)
#LifeWithChronicIllness
October 29, 2025 at 8:36 PM
Yea, neither my brain nor body wanna work today.
Highly unlikely I'm gonna stay functional long enough to watch TAR live tonight. Will have to do my usual catch-up post in the morning tomorrow.
(by morning, I of course mean mid-afternoon)
#LifeWithChronicIllness
Highly unlikely I'm gonna stay functional long enough to watch TAR live tonight. Will have to do my usual catch-up post in the morning tomorrow.
(by morning, I of course mean mid-afternoon)
#LifeWithChronicIllness
When your body feels like garbage, it's on fire, or "fill in the blank" your loved ones may think you're upset with them when in reality you're in pain, fatigued, mad at your body, or "fill in the blank." Be open about your experience. #LifeWithChronicIllness #MGWarrior
April 6, 2025 at 3:02 PM
When your body feels like garbage, it's on fire, or "fill in the blank" your loved ones may think you're upset with them when in reality you're in pain, fatigued, mad at your body, or "fill in the blank." Be open about your experience. #LifeWithChronicIllness #MGWarrior
It shouldn’t take 2+ years to get the proper bloodwork and testing, all of these symptoms are not just due to my spine disease. Finally someone’s listening!
#lifewithchronicillness #spinedisease
#lifewithchronicillness #spinedisease
March 27, 2026 at 2:51 AM
It shouldn’t take 2+ years to get the proper bloodwork and testing, all of these symptoms are not just due to my spine disease. Finally someone’s listening!
#lifewithchronicillness #spinedisease
#lifewithchronicillness #spinedisease
Little inescapable reminders of having a ✨️complex medical history✨️ #lifewithchronicillness
February 14, 2025 at 2:34 AM
Little inescapable reminders of having a ✨️complex medical history✨️ #lifewithchronicillness
Chronic Illness Confessions
"It's hard to watch people I grew up with living their lives fully, while I'm barely surviving."
Credit @katieandbelle888
#ChronicTruths #MySeveralWorlds
#LifeWithChronicIllness
"It's hard to watch people I grew up with living their lives fully, while I'm barely surviving."
Credit @katieandbelle888
#ChronicTruths #MySeveralWorlds
#LifeWithChronicIllness
April 19, 2026 at 3:02 PM
Chronic Illness Confessions
"It's hard to watch people I grew up with living their lives fully, while I'm barely surviving."
Credit @katieandbelle888
#ChronicTruths #MySeveralWorlds
#LifeWithChronicIllness
"It's hard to watch people I grew up with living their lives fully, while I'm barely surviving."
Credit @katieandbelle888
#ChronicTruths #MySeveralWorlds
#LifeWithChronicIllness
Pretty much!
Chronic illness schedule:
• Day one: Rest
• Day two: Rest
• Day three: Flare anyway
• Day four: Recover
• Day five: Recover
@CAROLINEEETHERIDGE
#ChronicTruths #MySeveralWorlds #LifeWithChronicIllness
Chronic illness schedule:
• Day one: Rest
• Day two: Rest
• Day three: Flare anyway
• Day four: Recover
• Day five: Recover
@CAROLINEEETHERIDGE
#ChronicTruths #MySeveralWorlds #LifeWithChronicIllness
April 1, 2026 at 2:31 PM
Pretty much!
Chronic illness schedule:
• Day one: Rest
• Day two: Rest
• Day three: Flare anyway
• Day four: Recover
• Day five: Recover
@CAROLINEEETHERIDGE
#ChronicTruths #MySeveralWorlds #LifeWithChronicIllness
Chronic illness schedule:
• Day one: Rest
• Day two: Rest
• Day three: Flare anyway
• Day four: Recover
• Day five: Recover
@CAROLINEEETHERIDGE
#ChronicTruths #MySeveralWorlds #LifeWithChronicIllness
Dealing with #ChronicIllness symptoms
Spoonie: *googling* Is this symptom normal?
Google: WHAT THE F*CK. NO GO TO THE HOSPITAL!
Spoonie: *googling* Is this symptom normal? + *disorder*
Google: Oh, yeah, you're fine, life sucks doesn't it?
Credit:dysfunctionalqueer
#SpoonieProblems #SpoonieProbs
Spoonie: *googling* Is this symptom normal?
Google: WHAT THE F*CK. NO GO TO THE HOSPITAL!
Spoonie: *googling* Is this symptom normal? + *disorder*
Google: Oh, yeah, you're fine, life sucks doesn't it?
Credit:dysfunctionalqueer
#SpoonieProblems #SpoonieProbs
October 17, 2025 at 4:17 AM
Dealing with #ChronicIllness symptoms
Spoonie: *googling* Is this symptom normal?
Google: WHAT THE F*CK. NO GO TO THE HOSPITAL!
Spoonie: *googling* Is this symptom normal? + *disorder*
Google: Oh, yeah, you're fine, life sucks doesn't it?
Credit:dysfunctionalqueer
#SpoonieProblems #SpoonieProbs
Spoonie: *googling* Is this symptom normal?
Google: WHAT THE F*CK. NO GO TO THE HOSPITAL!
Spoonie: *googling* Is this symptom normal? + *disorder*
Google: Oh, yeah, you're fine, life sucks doesn't it?
Credit:dysfunctionalqueer
#SpoonieProblems #SpoonieProbs
Cautiously optimistic that the low histamine diet might finally help me to stop getting sick almost every time I eat. Ate some chicken & rice yesterday fine, but feeling sick today after eating it as leftovers. If just freezing leftovers will help, I might cry with happiness. #lifewithchronicillness
November 14, 2024 at 9:41 PM
Cautiously optimistic that the low histamine diet might finally help me to stop getting sick almost every time I eat. Ate some chicken & rice yesterday fine, but feeling sick today after eating it as leftovers. If just freezing leftovers will help, I might cry with happiness. #lifewithchronicillness
What a difference a fortnight makes! Granted I'm wearing make-up on the right (today), but there's times I don't recognise myself 😔
#LifeWithChronicIllness
#Migraine #MetastaticBreastCancer
#Menopause #Fibromyalgia #Arthritis #CRPS
#LifeWithChronicIllness
#Migraine #MetastaticBreastCancer
#Menopause #Fibromyalgia #Arthritis #CRPS
March 4, 2026 at 2:30 PM
What a difference a fortnight makes! Granted I'm wearing make-up on the right (today), but there's times I don't recognise myself 😔
#LifeWithChronicIllness
#Migraine #MetastaticBreastCancer
#Menopause #Fibromyalgia #Arthritis #CRPS
#LifeWithChronicIllness
#Migraine #MetastaticBreastCancer
#Menopause #Fibromyalgia #Arthritis #CRPS
