iiinova — where your digital self keeps evolving

Deidre @deeder.bsky.social · 22/09/2026

The process of trying to get edisability will make you want to quit 3000 times just to get a denial, then another 2000 times to appeal that denial. My husbands prcoess started April 2025 & we're working our way through the appeal process. AKA round 2. #ChronicIllness #InvisiableIllness #mecfs #POTS

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Deidre @deeder.bsky.social · 20/09/2026

So it's our 17th wedding anniversary. With his #chronicillness of #MECFS that doesnt't leave us a lot of options to choose from. We both miss being about to go out and have drinks & dinner somewhere. So Surf & Turf our way. 🍽️ 🍜 #FoodSky

A round plate sits centered on blue warm tray topped with roasted crab legs, a small ribeye steak, and sauted zucchini sepears.

Our typical "celebration" dinner. Crab legs are spritzed with olive oil, sprinkled with salt, pepper, and paprika then slow roasted for about 30 minutes. A small ribeye steak is cooked on the stove top a long with zucchini spears.

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Michelle says: Be kind. Always. ❤️ @snarkysillysad.bsky.social · 19/09/2026

Planet Wild creating the beginnings of a Solarian Renaissance: #AGoodPlace

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Deidre @deeder.bsky.social · 11/08/2026

Windows software is just getting worse & I'm near tears dealing with it. I no longer want to support the system & I'm struggling to find a reason to go on Vs just closing down my biz. The sad part is, I know it can get worse; I just don't know if I can survive it. #techlife #smallbusiness

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Bateman Horne Center @batemanhornecenter.bsky.social · 08/08/2026

💙 Today is Severe ME/CFS Awareness Day. Severe ME/CFS can leave people bedbound, unable to tolerate light or sound, and dependent on others for basic care. This publication highlights why greater recognition and care are urgently needed: bit.ly/4fi8aRp #SevereME #MECFS

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Tom Kindlon @tomkindlon.bsky.social · 06/08/2026

"Symptoms made worse due to physical or cognitive exertion in Myalgic Encephalomyelitis & Chronic Fatigue Syndrome" #MEcfs #PwME #CFS #ME #MyalgicE

Word art of the data from "Symptoms made worse due to physical or cognitive exertion" in #MyalgicEncephalomyelitis & #ChronicFatigueSyndrome i.e. symptoms that are more common are bigger in font size than ones that are less common

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The Golden Ratio @thegoldenratio4.bsky.social · 31/07/2026

Think Like a Dog, all about dog psychology and why it makes them awesome, is out September 1! Check this link in for pre-ordering and tour dates and giveaways linktr.ee/thegoldenrat...

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Deidre @deeder.bsky.social · 29/07/2026

A lovely client treated me to lunch today. She's aware that my DH struggles w/a #chronicillness. She said to me, " I hope someone has your back. Someone has your back through all this, right?" I could only come up with my parents. No one else checks in on me. I see friends b/c I push to see them.😞

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Deidre @deeder.bsky.social · 26/07/2026

I'm so geeked right now, she's where my parents got the idea for my 1st name.

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Deidre @deeder.bsky.social · 23/07/2026

"Guys, is that better yet?"

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Deidre @deeder.bsky.social · 19/07/2026

My #pwME can talk to 2 other #pwME that live in our area, including 1 being his son's aunt. They talk through FB messenger or via text. All need support, but struggle to find it. #Chronicillness is everywhere, you just have to be aware of it to see it. #MECFS #Frailbutfurious

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Deidre @deeder.bsky.social · 14/07/2026

Applying & waiting for SS disability in the USA is a multi-year process. It's a hateful, disheartening time for someone to go through. You desperately need the approval for assistance, but have a small chance of winning. #mecfs #chronicillness

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Deidre @deeder.bsky.social · 28/06/2026

This month has been a struggle. Biz is way down. The car we wanted to buy was sold the day after the test drive. Our car then needed $1k in repairs. My PwME had a few PEM events and struggled with headaches all month. June was not pleasant, & now a heat wave is about to start. #mecfs #POTS #smallbiz

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Deidre @deeder.bsky.social · 27/06/2026

@bouncebckbelle.bsky.social I got mail today. Prefect timing as I had just returned from the library with a small stack of books to find it waiting in my mailbox. Love it. Thank you! 😍🤗 #FOTS

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Capt. Kandy Franklin ⚓️🍬 @captkandy.bsky.social · 24/06/2026

This was sent to me by one of the naturalists. Multiple whale breaches.

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#MEAction Network @meactnet.bsky.social · 22/06/2026

It is Monday and that means it is time for #MedicaidMondays! Today we are sharing facts about Medicaid, upcoming changes, and how to take action. See our #FrailAndFurious campaign page here: www.meaction.net/frail-and-fu... #Disability #PwME #MECFS #LongCovid

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Deidre @deeder.bsky.social · 20/06/2026

I already stopped by 1 of my local libraries and walked out with 2 cookbooks & @davidpogue.bsky.social new book, Apple: The First 50 Years. #BookSky 📚💙

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Democracy USA @oilgaschemicals.bsky.social · 16/06/2026

Want to dump Amazon audible... Get a library card . If your library Supports HOOPLA AND LIBBY GET IT!

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The Verge @theverge.com · 12/06/2026

If you need to cool down for a bit this summer, allow me to sing the praises of the library. If your local library system is anything like mine, it probably offers a lot of great things for you to do, both tech-related and not, at no extra cost. Read more from @jaypeters.net:

theverge.com

The library rules (and so do library streaming services)

Borrow ebooks and stream TV and film for free from home.

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Deidre @deeder.bsky.social · 06/06/2026

@thegoldenratio4.bsky.social They probably didn't ask to get bitten in so many words but @isamiscreant.bsky.social probably would approve. #FOTS

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Deidre @deeder.bsky.social · 04/06/2026

My PwME was denied a Permanent handicap placard b/c the cardiologist's PA thinks his conditions "may improve". Um, #MECFS has no known cure or treatment. Guess who just got sent the @batemanhornecenter.bsky.social Clinician Guide. #chronicillness #frailbutfurious

static.klipy.com

Tom E Jerry: Jerry's Angry Face

ALT: Tom E Jerry: Jerry's Angry Face

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Deidre @deeder.bsky.social · 03/06/2026

Tried to get a permanent handicap placard for my PwME; instead, the PA said they could reissue a temporary 1 again and that we'd have to see a specialist for a permanent one. What specialist??? This is the 5th temp. #ChronicIllness #mecfs #invisibleillness #frailandfrurious

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Deidre @deeder.bsky.social · 31/05/2026

It's the final day in #MECFS Awareness Month, and I'm ending it with a note about Quality of Life for the family. Chronic illness is devastating, not just to the person with it but to their family. Thanks to @tomkindlon.bsky.social for posting this graph. 🧵 #chronicillness #Frailbutfighting

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Deidre @deeder.bsky.social · 30/05/2026

For decades, people with #chronicillness where ignored and told that they were fine; they just needed mental help. My husband was no different. 🧵...

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Deidre @deeder.bsky.social · 29/05/2026

Day 29 of spreading awareness. #MECFS is a cruel, invisible illness that deserves more attention, research, and knowledge. #ChronicIllness #ChronicPain #InvisiableIllness #POTS

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Deidre @deeder.bsky.social · 28/05/2026

The founder of Modern Nursing. A naturalist who helped shape parts of modern science. Yeah, these 2 were 2 of the laziest people in history. 🙄 #mecfs #chronicillness #unitedwithME #frailbutfighting

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Deidre @deeder.bsky.social · 27/05/2026

My husband is mostly house-bound. We do our best to keep his inflammation down, which means a strict diet/lifestyle. He's lost muscle strength in the last couple of years. He has Erosive Osteoarthritis in his hands. He has POTS. Just to name a few things that work against him. #mecfs #chronicillnes

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Deidre @deeder.bsky.social · 26/05/2026

Aww, and he's perfect for #MECFS awareness month. 🐙

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Deidre @deeder.bsky.social · 26/05/2026

We went in for a Tilt Table Test for my husband and walked out with an #MECFS diagnosis. 2 years later, he got the POTS diagnosis as well. Currently, still on the wait list to see the POTS specialist in our area, have been waiting for over a year now. #chronicillness #Frailbutfighting

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Deidre @deeder.bsky.social · 25/05/2026

It is a complex, multi-systemic disease that profoundly impacts physical and mental function, often causing more functional impairment than conditions like congestive heart failure or multiple sclerosis. The quality of life of someone with MECFS isn't really a quality. #mecfs #fibro #chronicillnes

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Deidre @deeder.bsky.social · 24/05/2026

When you have a #chronicillness, there is no road map to recovery. #mecfs

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Dave Jorgenson @davejorgenson.bsky.social · 23/05/2026

Colbert guest hosted a public access TV show in Monroe, Michigan a day after the Late Show ended. Guest star: Jeff Daniels Special appearance by: Eminem Musical director: Jack White Genius. youtu.be/jJTXB5uT_C4?...

youtu.be

Only In Monroe --- May 22, 2026

YouTube video by Stephen Colbert

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Deidre @deeder.bsky.social · 23/05/2026

Unrefreshed sleep is common in many #chronicillness. For my husband, falling asleep isn't the issue; it's staying asleep. We work at improving sleep hygiene, and a decent night of sleep makes a world of difference in managing his other symptoms. #me/cfs #frailbutfighting #UnitedwithME

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Deidre @deeder.bsky.social · 21/05/2026

Every day, my husband works at trying to manage all his symptoms. I help him manage some. Things we've done to manage his #MECFS include restrictions on foods, eliminating WiFi/Cellular signals, air filtration, mold mitigation, & more. #mecfsawareness #UnitedwithME #frailbutfighing #chronicillness

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Deidre @deeder.bsky.social · 20/05/2026

My husband works, but to maintain his condition. It's something he does every day, throughout the day, with no vacation time earned. It doesn't earn an income. #mecfs #chronicillness #untiedwithME #frailbutfighting.

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Deidre @deeder.bsky.social · 19/05/2026

Let's talk sleep & ME/CFS, or rather the lack of sleep. My husband struggles nearly every night with sleep. Waking up throughout the night, struggling to get back to sleep. We've taken multiple steps to create better sleep hygiene, & the struggle continues. #chronicillness #mecfs #frailbutfighting

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Deidre @deeder.bsky.social · 18/05/2026

Last night, my husband had a ME/CFS crash. His head was sweating, and his pulse & oxygen rates both dropped. I did what I could to help stabilize him & he eventually leveled out. Sounds like fun Sunday night, doesn't it? #chronicillness #mecfeawareness #UnitedwithME #frailbutfighting

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Irish ME/CFS Association @irishmecfsassoc.bsky.social · 17/05/2026

17/ May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by sharing and/or liking this image. Day 17 #MyalgicE #MyalgicEncephalomyelitis

Myalgic Encephalomyelitis (ME) How ill are people with ME? In mild
cases, people lose 50% or more of their function, their symptoms don't
allow them to function normally. Most people would consider having to
decrease their activity by 50% due to illness severe, not mild!
Moderate cases of ME cannot work, are mostly housebound and often
cannot care for themselves fully 5 or need to use a wheelchair out of
doors. . Severe cases are bedbound, with many H debilitating symptoms
and very low quality of life. & Very severe cases are paralyzed,
cannot tolerate any stimuli or being touched, need tubefeeding or
oxygen. They are some of the sickest people on Earth. ME is an
extraordinarily disabling disease

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Deidre @deeder.bsky.social · 17/05/2026

I made 1 trip to the ED with my husband, and we decided that we'd never go back unless he is bleeding out. That's how awful the experience was. #mecfsawareness #chronicillness #MEaction

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Deidre @deeder.bsky.social · 16/05/2026

As we sat in the ENT's office, & we realized that my husband was going to be appointment-free until September. We get the summer off from Doctors. This is the excitement in the life of someone w/MECFS. #Chronicillness #mecfs #unitedwithME #MECFSawareness

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Deidre @deeder.bsky.social · 15/05/2026

When I have been saying it's more than just tired, I mean it affects multiple systems in the body. #mecfsawareness #fibromyalgiaawarenes #UnitedForME #frailbutfighting #chronicillness

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Deidre @deeder.bsky.social · 14/05/2026

ME/CFS is more than just being tired all the time. It comes with a gang of partners that reduces the quality of life. #mecfsawareness #fibromyalgiaawarenes #UnitedForME #frailbutfighting #chronicillness

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Deidre @deeder.bsky.social · 13/05/2026

You won't see him on a bad day unless you come to our house. The limited energy he has has to be rationed to do the basic things in life. Visiting with friends, Dr visits, attempts at exercise have to be thought out. Doing too much on a Good Day can result in several Bad Days afterwards. #mecfs

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 13/05/2026

If you're thinking of donating this #MillionsMissing, please consider donating to the #MEAction Emergency Department project! If you donate, there is a triple match right now-- details in replies.

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Deidre @deeder.bsky.social · 12/05/2026

Hey #musicsky, can we get some likes and listen to a new album? #music 🎧 #musicianfeed #MusicianSky

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Deidre @deeder.bsky.social · 12/05/2026

Why did my husband develop ME? Is it genetic? Is it from trauma? Can we fix it? Can anyone help? Millions of people worldwide are crying out for help. #frailbutfighting #unitedwithME #mecfsawareness #missingmillons

INTERNATIONAL ME AWARENESS DAY - 12 May
Doctors can't tell you much about
ME/CFS. They can't tell you why you have it, why you can't get better or even if you'll recover. Without more research into ME they'll never have any answers.
May is M.E. Awareness Month.
Every day this month I will post something about M.E. Please share to help raise awareness and challenge misconceptions about this illness.

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Deidre @deeder.bsky.social · 12/05/2026

My husband & I have yet to meet a medical professional familiar with ME/CFS. This is yet another source of information that I will be sending out. #mecfsawareness #unitedforME #frailbutfighting

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Deidre @deeder.bsky.social · 11/05/2026

I look, watch, and wait for PEM to arrive in my husband. After a walk, after a DR visit, after a long conversation with a friend. It's like a shadow lurking behind him, waiting to pounce when he puts forth even 1 ounce more effort than he should. #mecfsawareness #chronicillness #missingmillions

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