Medically Induced Hermit

Ridiculous! I wish you didn’t have to deal with this crap.

earth_fae (probably tumblr) "My disabilities do stop me. They control when I can shower, walk, eat, talk, and move. They stop me from working and socializing. They stop me from being able to leave bed. They interfere with me being able to process information, remember things, follow conversations, understand things, read, and write. My disabilities have completely flipped over my entire life. They destroyed my dreams and goals. Saying "don't let your disability stop you!" Isn't kind like you think it is."

When the specialist you waited months for says "sorry, not my department. LOL. Bye." pic of obi wan surrounded by flames screaming 'you were the chosen one!' mybodyistryingtokillme.com

The Unspoken Rulebook of Disabled Life Disabled people are expected to be poor, meek, sad, and apologetic. Break that stereotype and society short-circuits. A raw, sarcastic blog post on the unspoken rules of disability.

“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

going to the doctor when you're chronically ill is weird. It's like imagine everything in your house is on fire, and you're standing there and the fire department come in like, describe the fire to me and maybe we can find what caused it and put it out. and you can't just say everything so you're like... well the fire in the curtain is the biggest but the fire in the photo albums might be doing the most damage also the fire in the couch is really inconvenient occasionally the fire guy is like, well your tv is on fire so it might be electronic-fireitus but that would cause other things like fire in the dvd player and you're like, oh yes. that's been on fire for years. I forgot to mention it because it's always been a relatively small fire. It's right next to the bookshelf which has much more fire. and then the fire guy is like, oh. I wouldn't worry about that. book shelf fire just happens sometimes.

Happy Birthday!

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

So true! I have sleep disorders that have been giving me a really rough time this winter and throwing off my sleep cycle.

Finally falling asleep in the morning around daybreak, and waking up sometime between 12-2pm really limits my hours of daily daylight. It’s weird!

Yes it does suck extra hard. I’m sorry you had to go through that at your own birthday party.

Always so much effort, a high price to pay, and then an added slap in the face or heartbreak from those who misunderstand.

It could make such a positive difference in our lives to have some understanding.

Why I Can’t Just Meet You for Dinner The Reality of Post-Exertional Malaise

"[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

Good choice! 👍 I have a Ukulele. I chose it because it doesn’t hurt my hands and fingers as much as guitar, and can be played while stuck in bed, even lying down. Tabs and Tutorials are easy to find for free on YouTube.

Yes! I’d experienced that before, with my baseline worsening each time I went through physical therapy. But brainfog had me unable to think straight. When she mentioned it was for POTS, I got confused about whether those types of exercises might somehow be ok or helpful. Glad for the helpful advice!

Thank you

(5/5) I tried to talk to all of them about my situation. They didn’t get it. I felt desperate to keep people in my life, to not be alone. After all I’d already gone through, I then lost my friends, family, & boyfriend. I quit dating. Hermit now. TRY HARDER? I’ll never harm myself for someone again.

(4/?) At that time my new boyfriend couldn’t be bothered to make plans a few days to a week in advance, because he never knew what he was gonna feel like doing in his time off work. So I was always pre-resting before his days off, to be ready without PEM in case he decided to spend time with me…

(3/?) At that point I had already been through over a decade of hell with my health, lost my career & income, lost my apartment and was living in a family members basement. I was fighting to keep people in my life, paying a huge price to do so, and none of them cared enough to notice or value that…

(2/?) They had no clue how hard I was already trying just to be with them, what price I paid to do so, or what I was going through. They were not open to learning and understanding. I told my cousin (who was also his friend) how it hurt me, and he was mad at me & judged me for being hurt and upset…

(1/?) Many years ago, in my early 30’s, I was out with a group of friends (pushing myself & paying a high price physically just to be there) and told them how much I wish I could do some of the cool things they were doing in their lives. One said, “Can’t you just TRY HARDER?”. That broke my heart…

They do this in my yard regularly with a variety of trees, fallen dead trees, and stumps.

It has taken a few years, but the woodpeckers have finally made an old stump outside of my bedroom window disappear, piece by piece. It has been a popular lunchtime spot for them. Cool to watch!

>>Satire - doctor asks chronically ill woman to recount 20 years of med history in 20 seconds or less [pic of doctor and patient] mybodyistryingtokillme.com

#Satire

YouTube video by Purrple Cat Purrple Cat - Sea of Stars

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

Happy Birthday!

I would be doing the same, except painsomnia is currently a nightly guarantee. I will be awake against my will until 5-6 am (my current Chronic Illness bedtime). Happy New Year!

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 🤔.

🥳 It always feels good to be human again!

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

❤️