Hey #poets! I’d LOVE your suggestions!🏳️⚧️
I’m compiling a list of trans/NB #poetry & outlets for a Substack series on poetry lists (yes, Substack’s problematic, but so are my #chronicillnesses & I need a mo for the switcheroo).
I’d planned for this to be later but SC 💩.
#writingcommunity #napowrimo
"Non-coding RNAs turn out to regulate everything from embryonic development to immune responses to brain function. They help determine which genes get turned on and off, and when. They can promote cancer or suppress it."
This info is very promising for #Genetics / #RareDiseases + #ChronicIllnesses ⚕️
When you have intestinal issues, with chronic pain, constipation, AND very little "safe food" (or any food -thankfully paid today), apparently, pain meds don't last as long as normal.
#ChronicIllnesses #Pain
Why do some professionals assume that their diaries and commitments are more important? 📓
Vulnerable people with #LearningDisabilities #MentalHealth issues or #ChronicIllnesses have lives too! ✊🤝
#Advocacy can help to ensure that everyone is included 💙💛
A pin badge of a cute pigeon that says “sometimes I think, but then I forget”
Do you like my cute new pin badge that has just arrived! It’s so cute and so relevant.
#pinbadges #brainfog #chronicillnesses
Screenshot of temperatures & other weather conditions in my area
Picture of a very blue waterfall Type over it says: This too shall pass. And then some other bullshit will come and take its place. It never fucking ends.
Screenshot All text
Screenshot of an article from a few years ago about a former soldier & his wife who both got Long Covid. The important quote says: “I’ve been blown up, stabbed and shot at… but long Covid is worse”
Someone please send me an air conditioner🥵
Summer temps & at least a week long #heatwave have begun🥵
I’m stuck in bed, upstairs, due to my #ChronicIllnesses & there’s no ceiling fans or a/c in my apartment.
One shitty thing after another.
#LongCovid #ME/CFS #POTS #ChronicPain #2026Sucks
News Release 9-Mar-2026 Telemedicine remains popular, but who uses it varies widely Peer-Reviewed Publication University of Pennsylvania School of Medicine FacebookXLinkedInWeChatBlueskyMessageWhatsAppEmail Use of telemedicine spiked amid the COVID-19 pandemic, but is still used significantly more in the years following crisis compared to the time before, new analysis from Penn Medicine researchers shows. Telemedicine’s usage varies across patient groups as well, the researchers found. They published their work in the Journal of General Internal Medicine. Elderly people were more than 50 percent less likely to use telemedicine for their health care visits than going to an office-based appointment. The researchers also found that telemedicine visits were more common in primary care. Those in lower income brackets also more likely (by 6 percent) to make visits via telemedicine than in-office.
News Release 9-Mar-2026
Telemedicine remains popular, but who uses it varies widely
www.eurekalert.org/news-release...
“Telemedicine is no longer just a pandemic workaround—it has become a routine part of care delivery,”
#chronicillness #Spoonie #ChronicallyIll #ChronicIllnesses
#Spoonies
Chronic illnesses suuuuuck
#chronicillnesses
So I suffer from a handful of #chronicillnesses, the worst of them is #fibromyalgia. For the last 4 days it has been severely acting up. So this nosebleed was just frosting on the shit cake. And I'm tired of not being able to do anything productive with my day. #awareness #visibility
#Paralysed #student told she'd never #walk again set to tread #catwalk as #beautyqueen
A #teen once told she would never walk again is set to #strut the catwalk as a finalist in #MissProgressUK.
#ElspethCadwallader #Telford #ME #chronicillnesses #walkagain #pageant
www.youtube.com/watch?v=vpyn...
Having had chronic illnesses for as long as I can remember, getting hit with one I didn't know about and having it feel like the would is collapsing around you in less than 24 hours is really a mind fuck!
Reading up
#chronicillnesses #microscopiccolitis #chronicwarrior #gutproblems #healingmyself
Celebrate maintaining function w/ #chronicillnesses
Got up from the toilet & thought my leg weakness/numbness is worse because my feet/lower legs aren’t lifting right to walk to the sink, then realized I only pulled up my compression tights & my sweatpants are still wrapped around my ankles.
🤦♀️but🎉
Chronic Illness Boundaries - I need rest now so let's continue another time - Please give me space to manage a flare - I can't commit to that right now - I'm staying home today - Today is a no stress day for me - No. @theendocorner (dont know their social platform)
Boundaries are important for your mental and physical health 🩵🦓🩵
What would you add to this?
#chronicillness #chronicillnesses #raredisease #EDS #ehlersdanlossyndrome #hEDS #chronicpain
A pill box with its individual day lids open, showing labels for Monday through Sunday am and pm, next to an empty tea cup with a wooden lid with a collection of small and large pills of different colors. Next to that is a water bottle with a sticker. And a collection of empty pill jars. All set on a dark marble or quartz counter top.
Both/and. I’m lucky I have meds that help the #chronicillnesses I have. And it’s exhausting to keep up.
Just feeling the drain and thought I’d send ❤️ to anyone else refilling pill pods this am. 🥄
After I took this, I realized I’d forgotten one (CoQ10, for my lack of stamina* due to POTS). 🙄
K. Johnstone 4d Making sense of ME/CFS "You'd get better if you just...." is bullying and we don't deserve it. People with ME, Long Covid, and other chronic diseases are bombarded with messages that our illness can be treated 'holistically,' using a 'mind-body' approach. We just need to 'calm our nervous systems'. We need to 'reprogram our nervous systems'. The treatment you're supposed to do, the one magic trick that will 'cure' you, keeps changing. Yoga. Breathwork. Mindfulness. No, a different kind of mindfulness. Massage. Positive thinking. No, a different kind of positive thinking. It's exhausting. But more than that, it belittles us. It dismisses us. The people who insist on saying "You'd get better if you just did this one particular type of therapy," see themselves as compassionate, but they are bullies.
Short blog post by K. Johnstone @kjohnstone.bsky.social :
"'You'd get better if you just....' is bullying and we don't deserve it."
substack.com/@mecfs/note/...
#MEcfs #chronicillness #hiddenillness #invisibleillness #ChronicIllnesses #LongCovid #ChronicPain
ARP HomeFit Guide Smart ways to make a home comfortable, safe and a great fit for older adults — and people of all ages What if a home could be suitable for any resident, of any age or physical ability? What if an older adult who wants to live independently despite changing abilities or evolving needs could do just that? The AARP HomeFit Guide was created to help people live safely and comfortably in their home by enabling where they live to be a “lifelong home,” suitable for themselves and others in their household, no matter a person’s age or life stage. The AARP HomeFit Guide can help individuals and families make their current or future residence age-friendly. In addition, elected officials, policymakers and local leaders can learn about and advocate for the types of housing features and designs that communities need so their residents can live safely and comfortably — and thrive. Contents 2 A ‘HomeFit’ Home Fits People of All Ages 4 Entrances and Exits 6 The Foyer 8 The Kitchen 11 The Dining Area 12 The Living Room 16 Hallways and Stairways 18 The Bedroom 20 Closets 22 The Bathroom 24 The Laundry Area 26 The Garage 28 Outdoor Places and Shared Spaces 30 Home Safe Home 32 Quick Fixes and Harder To-Do’s The AARP HomeFit Guide and its companion worksheets are available in English, Spanish, Chinese, Korean and Vietnamese at AARP.org/HomeFit
2/
Table of contents for a free 36 page-booklet
Also at the link are the AARP HomeFit Guide worksheets
www.aarp.org/livable-comm...
#Disability #Spoonie #ChronicIllnesses #Spoonies
#ChronicallyIll
When Home Becomes a Healing Space Designing environments that support energy-limiting conditions Abby Oct 19, 2025 If you live with Long COVID, ME/CFS, POTS, or other energy-limiting conditions, home isn’t just where you rest, it’s where you recover from the world. For many, it’s one of the few places that feels even somewhat safe, a place where the constant stimuli, unpredictability, and demands of the outside world can soften, even just briefly. Unfortunately, safety doesn’t happen automatically. Our spaces either ask for energy or return it to us, and when your body is already working overtime, those subtle exchanges matter. We want to shape an environment that doesn’t demand more from you than you can give, one that allows your body to exhale and lowers the background tension you might experience so that recovery has a chance to begin.
"When Home Becomes a Healing Space" by an OT who specialises in ME/CFS & long Covid.
onelifelivedwell.substack.com/p/when-home-...
This particular article is pretty general & suitable for people with lots of chronic illnesses
#chronicillness #Spoonie #MEcfs #LongCovid #ChronicIllnesses #Spoonies
Next heatwave arriving on Saturday and lasting longer than the previous ones. So over this crap. My #ChronicIllnesses flair up severely.
Life with Chronic Illness - Happiness and Pain Can Co-Exist
"I suffer from a number of #ChronicIllnesses whose names sound like tongue twisters. #AntiphospholipidSyndrome. Systemic #Lupus Erythomatosus. #SjögrensDisease. Paroxysmal Supraventricular Tachycardia... #epilepsy is the easiest, except that it isn’t.": buff.ly/yw0HHFX
Chronic Illness Support Have you heard of Cards2Warriors? We want to highlight (again!) the special work this nonprofit does for those affected by rare or long-term illnesses —including patients, caregivers, siblings, and medical professionals. Cards2Warriors has a special program called Happy Mail, where they send snail mail cards to those who need encouragement and cheer. It doesn't matter which of the 7,000+ rare or long-term illnesses you've been diagnosed with —Cards2Warriors welcomes YOU and wants to shower you with some snail mail support! Open to warriors worldwide, with an option for digital cards. Learn more and sign-up here.
Image is from an email from Institute for Neuro-Immune Medicine Center for Collaborative Research
Links from image:
www.cards2warriors.org
www.cards2warriors.org/happy-mail
#chronicillness #illness #Illhealth #ChronicIllnesses
#Spoonies #Spoonie #ChronicallyIll
We just published our first newsletter! Check it out and subscribe for FREE!
#litmags #chronicillnesses #disabilities #mentalhealth
"Partners and potential partners have also written me off due to my multitude of #ChronicIllnesses ; they do not even want to begin w the slightest possibility of me being unable to conceive.": buff.ly/ZyThOky
#MondayBlogs #parenting #AntiphospholipidSyndrome #infertility
THE LONG COVID ULTIMATE BINGO Grid showing lots of irritating comments people with long Covid and other chronic illnesses may hear said to them
Many with ME/CFS and other chronic illnesses may be able to relate some if not many of these
This was posted as a comment on my FB page today, but I'm not sure who created it originally.
#LongCovid #MEcfs #chronicillness #hiddenillness #invisibleillness #ChronicIllnesses #Spoonies #Spoonie
Yes it does. Happiness is being able to afford proper health care and help (for yourself and your elderly parents), medicines and groceries. They make life a whole lot more bearable when you don't have to pinch every penny just to make ends meet.
#solocaretaking #chronicillnesses
Quote this with what you gave accomplished in 2025, no matter how big or small.
I survived. That’s it, that’s the post. #ChronicIllnesses
"This is the hardest part of being a #caregiver for me – the #emotional roller coaster. 1 min I am feeling great abt how well my wife is doing & the next..I am feeling down about how her #ChronicIllnesses are impacting her life.": buff.ly/gKs8y5k
#ChronicPain #carer
"A lump gathered at the base of my throat. I presumed that it was some random ailment, which you get from time to time living with so many #ChronicIllnesses. Then a sudden #panic flooded through my veins, and I hurried to seek comfort.": buff.ly/Wp1NJKO
#epilepsy #aura #seizure
I haven't been on in awhile. I've been struggling with my health and trying not to crashout. #Disabilities, #chronicillnesses #zebbrawarriors life is not for the feint of heart. The current climate is stressing me out. Between ai in my Medicare possibly deciding if i live or die and
no, I will not shoot custom content relating to My illnesses or disabilities, stop asking.
I'm not kinkshaming but for a lot of us with #chronicillnesses who are trying to spread #disabilityawareness, fetishizing the suffering our bodies puts us through is NOT something we want to film/edit/relive
