It’s been so long since I’ve been able to remember the feeling of being alive, free, and hopeful in a healthier body. It was a lighter feeling than chronically ill life is now. The smell of today’s fresh spring air kept briefly taking me back to better springtimes from my past, and it felt SO nice.

Powerful testimony on #MECFS by Emma Shorter in the Scottish Parliament from 2018 “It turns fit and active people into ghosts… I know teachers who can’t teach, children who can’t play, and parents who can no longer hold their children.”

There was all kinds of drama going on between the crows and the squirrels yesterday and I was awfully grateful to be a casual observer and not a participant

I’m left-handed, but I can only snap my fingers on my right hand. This confuses me. I feel like since I have better fine motor control with my left hand, it should not be the Dud in this finger snapping situation.

@chronicnotebook.bsky.social

ME Advocates Ireland - advice for Occupational Therapists meadvocatesireland.blogspot.com/2026/01/occu... Screenshot from latest Chronic Living Therapy @chronicliving123.bsky.social newsletter #MyalgicEncephalomyelitis #PwME @lammasleaves.bsky.social

I wish more people understood the terror disabled people face when dealing with housing insecurity, poverty and unsafe caregivers. Many in the community are forced to rely on abusive people for survival. It shouldn’t be this way. We desperately need more support & resources.

#Osprey #Birds #WildlifePhotography

#BlueJay #Birds #WildlifePhotography

"My aim with ‘A Chronic Voice’ through this blog and various channels is to raise #awareness about lifelong #illnesses from various #perspectives ..I also want to encourage #empathy amongst all facets of society and not just within #healthcare.": buff.ly/5jk5jDB #ChronicIllness #advocacy

#Grasshopper #WildlifePhotography

#Grasshopper #WildlifePhotography

I’ve been going through some old pictures and found some to share. #Osprey #Birds #WildlifePhotography

The endless exhaustion and frustration of having to explain #ME and PEM to health professionals who are not convinced is heartbreaking and aggravating beyond belief. They should know, they should be disturbed and interested enough to get themselves informed and then help us. Act please!

disabled people who cannot work deserve so much more money than governments give them to live.

A swan #LookingAtMe. Every time I see a swan, this quote from the movie Billy Madison plays in my head- “Stop looking at me swan!” 🤣 #Birds #WildlifePhotography

Intro to a 1993 documentary on #MECFS When medicine doesn’t understand an illness, patients are often mistreated. New discoveries challenge existing beliefs, but in the meantime, for those suffering, life can be a living hell.

Today is Disability Day of Mourning. People with disabilities are far more likely to be trapped in abusive relationships. To be killed. To be assaulted. We’re forced into legislated poverty & made to be dependent on people who don’t always have our best interests at heart.

Older video of a busy afternoon at the window bird feeder. #Birds

I’ve said it before, and I’m sure I’ll say it a thousand times more: If you believe you love freedom but don’t care if it applies to everyone, what you actually love is privilege.

“Apparently, if you’re #disabled, you’re only allowed to exist under 1 condition: Poor. Meek. Sad..Want a garden? Selfish. Go on holiday? Fraud. Dress nicely? Suspicious. Cashmere? Criminal. iPhone? Scam artist. Takeaway curry? Witchcraft.”: buff.ly/OJVO4FM by goblinbloggeruk #disability #NEisVoid

Everything outside is white (covered in snow) and frozen. Cabin fever often kicks in mid-February, but I’m keeping in mind the little treasures I’ll find out in my yard starting in Spring… when I emerge from Hibernation and go outside with my camera. 😊 #ChronicIllness #Disability #NaturePhotography

"[People] think you’re not trying hard enough. In reality, you’re trying so hard you’re causing yourself harm just to maintain the bare minimum of participation in the world." (Why I Can’t Just Meet U for Dinner): buff.ly/7mmPR6G by @darthfoo.bsky.social #ChronicPain #awareness #pwME #spoonie

Purrple Cat ❤️ youtube.com/watch?v=kLvZ...

I’ve been doing my backup career plan for awhile already. Obviously it is #4, hermit of the cursed end of the forest, lol. I feel like I am due for a promotion though 🤔.

This is nothing new, but I still feel great relief. After too many days of moving it from Today’s To-Do list onto Tomorrow’s, I finally accomplished a SHOWER. Victory! 🥳 I’m Clean! #ChronicIllness #ChronicPain #Disability #ME/CFS #PEM

I'm Not Ignoring You, I'm Too Sick To Talk: A Memoir

Introduce yourself with 5 concerts you’ve seen: 1. Bob Seger 2. Tom Petty 3. Dave Matthews Band 4. Bob Dylan 5. Bush/No Doubt/Goo Goo Dolls

Introduce yourself with 5 animals you’ve seen in the wild: 1. Turkey 2. Whitetail Deer 3. Loon 4. Red Fox 5. Bald Eagle

Part of what makes medical PTSD so painful for people experiencing chronic or complicated medical conditions is being at the mercy of doctors or others who often don't understand or believe what they are struggling w/ every day.

Because of how my #ChronicIllness situation affects my body and brain, I can’t do groups anymore. Including holiday & family gatherings/meals. I’ve spent every holiday alone for over a decade. I mean, Hermit much? 🥴 But I’m glad that I have memories of The Kiddie Table AND of aging out of it, lol!😊

We’re sorry, but The Void is full of screams today, so please try these alternatives: - headbutt the sea - have a dance battle with squirrels - write a bad Yelp review of the moon - mutter obscenities into your soup bowl

I need advice please. My doctor often ignores that I have #ME/CFS, and occasionally gives harmful recommendations. We’re considering that I may have Autonomic Dysfunction, and she told me to research Graded Exercises for POTS. Is this more bad advice for ME/CFS that I need to protect myself from?

A stupid life lesson that I learned the hard way: **Clear Flex Spray does NOT stay clear!** 🥴 It yellows 😡. Now I have some dumb looking “simple” home repairs. Leaky crack on my white shed and my white gutter? Now yellow spots showing where I fixed the leak, Argh!!!

#chronicillnessmemes #chronicillnesshumor #chronicallyill

Plus, some people on SNAP are unable to prepare, cook, and clean up meals due to illness/disability/limitations. Not everyone has the choice to not eat those types of foods.

People believe when you become disabled, support magically appears Many of them think assistance is provided based on how sick you are It doesn’t work like that There’s very little support available. You don’t get more when you have a setback… you’re on your own We need better social supports

#Sunset at the beach.

We REALLY need this. The number of careless errors, of serious symptoms overlooked, of biased judgements made and documented in my medical notes... it's mind-blowing. And it does so much harm. #NEISvoid #DoNoHarm

Separate from other fluctuating #ChronicIllness symptoms, I’m always trapped inside during the hottest and coldest parts of the year because my body can no longer tolerate temperature extremes. Seasonal relief is coming! I look forward to walking to my mailbox in less misery, lol. #Spoonie

Kiddie Table! 🤣