dSavannah = #disabled #MEep (#pwME)

It's #MEAwarenessMonth, and tomorrow (May 12) is #WorldMeDay. So how am I "celebrating"? Not by doing advocacy, not by sharing a bunch of other posts, not by writing for my blog. I can't. I'm too tired. (Except for this post, of course.) I am one of the #MillionsMissing 1/

Read my review: wp.me/p2Crn0-25J Order the ebook: books2read.com/u/bOXvwg Order the print book: books2read.com/u/bOXvwg #DisabilityAwareness #Advocacy #Activism #StrongerTogether #YouAreNotAlone (photo courtesy of the author; her dog Larry is showing off the book)

The excellent book _The Things We Don’t Say: An Anthology of Chronic Illness Truths_, edited by Julie Morgenlender (@ChronicTruths) is 25% off through Jan 1. Raw, emotional, real #essays about living with #ChronicIllness and the importance of representation.

I’m so saddened to learn this.

In disbelief reading this. As I’ve adjusted to my very-disabled body over the past 2 years, @SFdirewolf has been a guiding light, an inspiration. Disabled ppl have to defend so ferociously their right just to exist. She did so with eloquence, rage, righteousness, joy. RIP 💔

Imagine that you have a pretty heavy new and chronic illness that has changed every aspect of your life. Now imagine that you have to piece together how it works based solely on the commentary of strangers online. #MEAwareness

When you become disabled there’s a few things you notice right away: Ableism is everywhere. People will abandon you. Even those you were certain would stick by you. Just because something is illegal or against human rights code doesn’t mean it’s not happening ALL the time

In 3weeks I’ll be 31. I have never lived away from home, never had a relationship, never been out to work. I’ve not been on holiday with friends, or finished my education, or put down a deposit. I haven’t been out alone in 16years. I have #SevereME I will never stop trying.

@hopefullizzy Sending all my love and solidarity. ❤️ This disease is the worst!!

Existing feels so bloody hard at the moment. I feel freezing cold and shiver and shake but my skin is warm and my temperature is fine, I have awful pain all down my legs that feels like burning and like they need to be pulled, I keep waking up freezing yet covered in sweat

@fionangreg @hopefullizzy Omg purple orchids?!?!?!?!! Gorgeous!

@hopefullizzy My orchids are still alive 🙌🙌🙌 It’s a miracle 🤣

This is especially powerful: “I felt sort of pre-dead: I’d given up all my goals for life, every purpose I’d organized myself around, every expectation that used to ground me. And yet I was still alive. So what was left, with all of that gone? What is it to live, pre-dead?” 2/2

TW: Beth Mazur’s death, and our “meaningless” lives as MEcfs patients by @julierehmeyer 1/ jrehmeyer.substack.com/p/holding-what…

So sorry to hear of the death of @Bridget_OShea who had severe #ME This is a piece of hers on Substack, I’m sure a lot of us can relate to it. Another #ME death 💔 open.substack.com/pub/bridgetosh…

@Z3R0Gravitas @space_and_pace @tessfalor @HollyHK_UTA Mine goes from 94-95-96-99 when I test it. It doesn’t seem consistent at all.

@space_and_pace @tessfalor @HollyHK_UTA @dSavannahCreate It's probably expected. But my morning reading on pulse oximeter (more accurate) is always 97%+ while Fitbit (in sleep) is all over the place, around 96%.

My teen is presenting to his classmates about #MyalgicEncephalomyelitis and the importance of #masking tomorrow. Please join me in cheering him on. 🫶

“I put in the work to get better” This type of condescension is SO insulting to those who have worked so hard at pacing. Don’t ever assume that very severe ppl are working any less hard than you. They are probably working a whole lot harder than you could ever imagine.

@Ron015400771366 @alexandrite113 Kindly fuck off with that nonsense. Educate yourself about Long Covid and Myalgic Encephalomyelitis. No amount of whatever the duck you’re suggesting will help.

Unfortunately, I have to have some level of skepticism about the complete accuracy of this story. I want to apologize to Amy but I work in the medical industry and when I step back and look objectively at the story as presented it has more questions than answers. My first question is do you consistently follow a routine designed to improve your health. By consistently I mean every day 24 hours, 365 days a year. I am 64 and unvaxxed, I have quite a few friends of all ages who complain of chronic health issues. When I talk with them I find one consistent theme, "well I did great for 3 months then, you know, work, family, I couldn't find time, etc." There is no magic pill and staying healthy and fit is hard. As long as your goal is, better today than yesterday, make better health choices i.e. have the chicken instead of the double cheese burger, more often than not. I pray you find a solution to your suffering and I admit my advice and commentary are not just "old school" but ancient, but I think your solution is in you.

I've been 90-99% bedbound for nearly 3.5 years. People say "it's the vax" - I never got the vax. People say "it's laziness" - I used to be an athlete. No more excuses. We need help NOW. #5YearsLongCovid #HalfADecadeOfNeglect #LongCovidAwarenessDay2025

Sometimes it feels like there is a thousand miles between my thoughts and acting on those thoughts.