Top Tweets for #moderateME
#MECFS #ModerateME My daughter functions about 50% if that. She ran out of vyvanse for narcolepsy (has MCAS, hEDS (AAI Chiari tethered cord), dysautonomia, SIBO. She's in a crash. She lives with fiancé. He is totally on board with her illness and need for empowerment as well as care. He's talking with me for her because she can't. I HATE THIS ILLNESS. I HATE WHEN YOUNG PEOPLE ARE FALLEN the absolute most. MY sister's fate plummeted (same illnesses) before she was 12. My daughter before she was 12 though age 12 was the point of no denial.
#ModerateME You spend all your time divving up unpredictable functioning. The planning aspect which involves the constant moving or appointments and deadlines is a massive drain of what precious functional capacity one has. I just want to give up. I regret the years of programming that taught me what I am what I produce.
#ModerateME my spine has been inflamed since tree pollen elevated here. It's causing unrelenting pain (no treatment is helping) and chronic NAUSEA. Muscle relaxers are not helping. I have spasms in cervical impacting Chiari and several unstable vertebra as well as thoracic vertebra. MCAS inflammation causing increase in hEDS. The nausea is the worst.
#ModerateME Last two days have been about setting myself up to make tomorrow's doctr appointment. This means extreme rest.
Not to take over the original post, but this is it exactly. I constantly mourn the girl who never really got to live. On my best days, even my eyes (inflammation)don't fully open compared to my worst days of #ModerateME. I feel like a shadow thx to #SevereME #SaveKatiana #pwME
Nikotin auf 3,5mg erhöht.
2 Stunden später in der Lage, den kleinen Deltaschleifer in die Hand zu nehmen.
2 Minuten später: Der Akku des Geräts ist leer.
Oh the irony.
#moderateME
This 🔽is heartbreaking. 5th yr. I don't know how to manage this. I just don't. Been on X a lot lately which not great for my nervous system. Can't read a book #PENE. Do not, can't figure out how to socialize. Moved rt bf pandemic. No friends. #ModerateME body not in my control.
@MEFoggyDog Debra has #ModerateME with #POTS, where orthostatic intolerance consistently causes a higher HR/too fast. She uses a beta blocker (Propranolol), which can be spread through out the day (as needed). She monitors her condition with a HR tracking watch.
@the_dramamama @FaithOxenbridge @TalkTV @petercardwell It amazes me how Healthcare Professionals can’t understand how #SevereME seriously impacts our ability to speak. I’m currently worried how eating is now becoming difficult. The future looks so bleak unless they come up with a cure soon. I realise now #ModerateME was a blessing!
@MECFSNews @MichelleBull4 @karenphysiocouk @sunsopeningband Unfortunately the mention of doing household tasks like this disregards the reality of #SevereME #VerySevereME and even #ModerateME This illness #MECFS is a spectrum or on a sliding scale of severity which even #NHS doctors, nurses and Healthcare professionals don’t understand!
Today I crapped my pants while sitting in my chair watching TV. #ModerateME this is what you risk with every Covid infection.
"Severe ME affects roughly 25% of people with ME... One lesser-known but crucial issue that significantly impacts the lives of individuals with severe ME is malnutrition." @WorldMEAlliance #EndMalnutritionInME #SevereMEDay
https://t.co/6V2Hhl2UqF
#pwME #ModerateME #SevereME I’m the most ill I’ve been since I got diagnosed 5 years ago. I’m bed/house bound most days in a small flat and have very little concentration. How do you stay smiling? How do you make your days as happy as can be?
15 Uhr.
Ein Telefonat.
Angezogen.
Eine Wäsche angemacht.
Die nächsten Stunden schlafen, Akku leer, Magen rebelliert, Augen fallen zu, Körper aus Blei.
Mit den 3 Punkten oben gehört heute zu den produktiveren Tagen. 👍
#LifeWithME
#moderateME
Thank you for supporting
Cherry #SevereME and #MillionsMissing
@Stmarys_PH
I’m an ex-parishioner,
had mild ME when I was at St Mary’s,
mild for 25 years and thanks to
another virus and #LongCovid
I have had #ModerateME for 5 years.
All #pwME need research,
care, support.
Odd picture I know but I am so happy that I felt well enough to dye my hair. It has been a long time and doing something nice about my appearance is usually way down the bottom of the list of things to use energy on.
#ModerateME #SelfCareMatters #GreenHair
A bad #ModerateME day, is like going off an energy cliff. Or maybe a spaceship when it's been so beaten up only certain life support systems remain functioning. Everything else starts to fail without warning and your left trying to cling on. #MECrash #MyalgicEncephalomyelitis
3/3
With hope I long to paddle once more,
But it is early days
Until then I will drift while I close my eyes,
dreaming of wading into deeper waters
#MEAwarenessDay #pwME #moderateME #MyalgicEncephalomyelitis
Managed a shower today, 7 days after the last one. Longer than normal but I did other things and that means not doing something else.
However I know how blessed that I am still able to have them and not need help. #moderateME
Pretty sure I have Covid now. Testing negative on LF but just done PCR. Been in house for last 10days with my Covid positive child. Feeling more rough than usual #moderateME praying that it passes quickly without repercussions.
Thank you @TheChronicColab for protesting outside NICE HQ for #ProtestNICE4ME. Wish I could be there but very little is possible with #moderateME, @NICEComms please #PublishThatGuideline NOW.
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