Lmst

Fuck my LIFE, y’all.

(No I have not done any strenuous exercise)

Sorry the photo’s blurry - I physically cannot hold still.
#POTS

A slightly blurry photo of my Apple Watch, which is letting me know that my heart rate today has ranged from 60-166. I have not done any exercise and have only been awake for three hours.

Its starting to get warmer out and my body is hating it. This winter was fun while it lasted in the sense of cool weather so im able to do more without passing out. My #POTS is already starting to kick my butt with the small temp increase we've gotten. Guess im going to have to go back to being accessed all the time and doing fluids everyday so I can do really anything besides being horizontal. Hopefully my meds my specialist gave me can make a difference too. Otherwise now that its warmer ill be horizontal and staying indoors doing nothing. I also have at least another month for physical therapy to help me understand my body better with my #hEDS Guess its gonna be a lot of hand held gaming and reading for a while

No long list of tips in this particular blog post by this knowledgeable OT but I agree with the general points e.g. small changes in things like energy conservation and routines can make worthwhile differences.

https://onelifelivedwell.substack.com/p/the-quiet-work-of-making-life-possible

#MEcfs #LongCovid #POTS @pots @longcovid #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

1/

The Quiet Work of Making Life Possible
Why sustainability (not effort) is the foundation of meaningful life.
Abby
Dec 29, 2025

Here’s a thing that’s easy to miss: Small changes rarely make a scene.

They don’t announce themselves.

They don’t arrive with a before-and-after photo. They’re not marked as milestones. They don’t even feel especially satisfying at first. Sometimes they feel almost… disappointing. Too small. Too ordinary. Too quiet to matter. Easy to dismiss. Easy to forget.

And yet (and this is the part I keep returning to gain and again) they’re often the exact changes that hold everything together.

I’ve watched this pattern long enough that it’s hard to unsee. In work with people living with energy-limiting conditions, the moves that restore a sense of life aren’t dramatic. They’re precise. They’re humble. They tend to slip under the radar because they don’t look like progress the way we’ve been taught to recognize it.

2/

“Doctors told him his POTS was probably caused by the upper respiratory viral illness he contracted while with the Celtics in late February 2025. He sat out eight consecutive games , telling reporters after his return that he was still dealing with "lingering fatigue" because of a lasting problem they weren't able to identify yet.”

#POTS #MEcfs
@mecfs @pots

Long article on the 'mysterious' illness of NBA star Kristaps Porzingis'

https://www.espn.com/nba/story/_/id/48102994/kristaps-porzingis-mysterious-illness-warriors-uncertain-future

One person has collated just the parts on his health struggles here:
https://www.s4me.info/threads/well-known-famous-people-with-me-cfs-public-thread.31768/post-678954

Viral onset plus all these symptoms suggest ME/CFS as a strong possibility. Best for his long term health I think to take an extended break

#PostExertionalMalaise #PEM #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#POTS @pots

But when Porzingis addressed reporters afterward, before the fifth question, he let out a yawn.

An uncontrollable, extended yawn. Porzingis apologized, as if to make sure he wasn't being perceived as rude.

Then he yawned again, sending out a hidden reminder of the persistent exhaustion that is threatening to derail his NBA career: The 30-year-old former All-Star was diagnosed last year by Celtics doctors with postural orthostatic tachycardia syndrome (POTS), an autonomic condition that can dramatically increase heart rate and cause dizziness and fatigue.

"I felt all right. Far from being in perfect shape," Porzingis said. "But I think for [the] first game back after a while, getting some energy back, feeling good. ... I think it's just a matter of time to get in a better rhythm."

Three mornings later, Porzingis woke up sick in his team-provided San Francisco hotel room and called the training staff. He went from being the spotlight story of the ABC afternoon game against the Denver Nuggets to being so ill that he couldn't even come to the arena.

In der #Praxis habe ich den Satz „Das kann nicht sein!“ gestrichen. Erkrankungen wie #MECFS, #hEDS, #HIT, #MCAS, #MCS, #FQAD, #PoTS und #SFN haben mich rasch eines besseren belehrt!

Eindelijk een douchestoel, wat een vooruitgang. Tot nu toe zat ik op een kratje, niet heel stabiel en ook niet echt aangenaam. Voor wie ook nog een stoel zoekt, ik heb deze van Ikea. Best betaalbaar, zit echt lekker en ik vind 'm ook best mooi #LongCovid #mecfs #mcas #pots https://www.ikea.com/nl/nl/p/basingen-douchestoel-antraciet-10595967/

Hab hier gerade ein #ELSA #Modem, bei dem ich die Firmware ausgelesen habe. Schön, was man da direkt im Header der #Firmware findet 😉. Ach so... das landet natürlich auch alles wieder in meinem Weblog. Da es dafür ja nichts gibt, sichere ich das jetzt mal zumindest für mich. Evtl. parke ich es auch noch auf Archive.org - mal sehen. #Retro #POTS #dialup #rockwell

Man sieht einen Ausschnitt aus der EPROM Programmiersoftware Xgpro. Im Ausschnitt ist der Hexdump 0x100 Bytes zu sehen und rechts daneben sieht man die Übersetzung in ASCII Text. Im Text steht "(C) ROCKWELL.-CP steht hier ausschliesslich aus programmiertechnischen Gruenden. Es gilt: (C) ELSA.17.12.96 14:14"

Years of scapegoating rhetoric has led to ‘envy & resentment’ of those with blue badges, research finds

Note: blue badge = UK name for disabled parking permit

https://www.disabilitynewsservice.com/years-of-scapegoating-rhetoric-has-led-to-envy-and-resentment-of-those-with-blue-badges-research-finds/

Screenshot from AMMES March 2026 Newsletter

#Disabled #Disability #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots

Blue badge symbol

Years of scapegoating rhetoric has led to ‘envy and resentment’ of those with blue badges, research finds

In a survey of 300 people, 74 per cent of disabled people said they had been accused of “faking” their impairments while using their blue badges.
These types of encounters were particularly common for younger disabled people, with some told they were “too young” to be disabled.
One of those who took part in the survey, who is 49, said: “A member of the public stopped me as I was parking in a Blue Badge space.

“He knocked on my window, I wound it down and he told me I shouldn’t be parking there, and I had no right to be there.

“I explained I was disabled. He said I was too young and there was nothing wrong with me.

“I proceeded to get into my wheelchair and get out of the car, in fairness, he did look quite embarrassed when I got out of the car.”
Read more here>>

#ThereForME @theguardian.com@bsky.brid.gy @davetuller1.bsky.social@bsky.brid.gy #ME #Chronicillness #LC #PEM #POTS #LivesWeCannotLive #MissingMillions @meassociation.org.uk@bsky.brid.gy @longcovidsupport.bsky.social@bsky.brid.gy @davidjoffe64.bsky.social@bsky.brid.gy @nhsengland.bsky.social@bsky.brid.gy @thelancet.com@bsky.brid.gy @rcgpt.bsky.social@bsky.brid.gy @cgatist.bsky.social@bsky.brid.gy

The cartoon series is called - This Weekin Disbelief

A man and woman are sitting opposite each other in armchairs - the man is Simon Wessely, the woman is asleep.

The title says “TWO pathogens cause suffering in people with #ME...”

The caption says “...the worst one isn't even a virus!”

The cartoon maker is #FanningTheFlames

Soll ich was zu medizinischen Gaslighting schreiben oder lieber lassen?

Es ist unerträglich.

#MEcfs
#PAIS
#MCAS
#POTS
#PostCOVID

Unfortunately, a fast benzodiazepine detox, where benzos are removed from the patient's system within a short period, such as 2-4 weeks, or less, can cause serious protracted withdrawal issues.

Read more 👉 https://lttr.ai/AozhL

#ProtractedWithdrawal #POTS #BIND

My god, AT&T's support for POTS lines is awful. Support webpage says to call their 800 number. 800 number offers to send a link to their support webpage. Eventually tries to connect me to a service representative, and they have technical issues and cannot connect me to a representative, please try my call again later.

It's almost like they don't want to be in this business.

#ATT #POTS #customerservice

2019 me: I’m so glad I’m getting a pump, I can’t go anywhere easily dragging gravity drips for 4 hours a day

2026 me: thank god I get to go back to gravity drips for a few days, there is rarely ever air in the line but the pump won’t stop beeping

#Palliative #HomeInfusion #POTS

If you have ME/CFS, have you ever tried Hawthorn?

@mecfs

#Hawthorn #MECFS #POTS

They have responded to public outcry 👍

Health New Zealand has removed controversial recommendations that people suffering from a rare connective tissue disorder not be given certain treatments.
It follows criticism from patients and advocacy groups.

https://www.rnz.co.nz/news/national/588410/health-new-zealand-removes-some-new-advice-about-ehlers-danlos-syndromes-and-hypermobility-spectrum-disorder

#EDS #POTS #MCAS #Hypermobility #Hypermobileehlersdanlossyndrome #ChronicIllness
see above post