@sunsopeningband I, as well as all of the #pwME I've met online, come from the 'pull yourself up by the bootstraps' way of approaching hardships in life. IF we COULD have, we WOULD have. We tried sooo hard. We fought. We lost over and over and over. #PEM doesn't play fair and makes all the rules.
PEM Intensive Workshop class photo! It was a powerful one I am so grateful to have attended with these lovely folks. Thank you Sarah!
#pem#pemacting #perdekampemotionalmethod
Amazing! Big supermarket shop *AND* I self-scanned it all. Warning buzzer on armband-HR-monitor only went off as I reached out to enter my PIN number.
Home for the evening, with my feet up.
This really is promising 🙏
#LongCovid#LongCovidTeacher #PostExertionalMalaise#PEM
@PutrinoLab In the future, I will refer to this as “Symptom-adjusted day-to-day routine” rather than “exercise adjusted to my #PEM threshold”.
Could de-facto mean the same thing in an isolated case, but the connotation is vastly different.
That’s my takeaway at least - happy to discuss
@MMissingGermany Uff, die meinen #PEM sei, wenn man beim HIIT Muskelkater kriegt und nicht mehr ganz fit ist, oder was? 🤦♂️😮
Es scheint mir so, als hätte man in den 80ern ein “geschwächtes Immunsystem” und AIDS in den selben Topf geworfen.
This is an extremely good example of how horrific #PEM with #MECFS can be. Even the slightest cognitive load can trigger weeks of sickness exacerbation.
Physicial, cognitive and emotional load add up. The less energy you got to manage a day, the more you notice.
This is an extremely good example of how horrific #PEM with #MECFS can be. Even the slightest cognitive load can trigger weeks of sickness exacerbation.
Physicial, cognitive and emotional load add up. The less energy you got to manage a day, the more you notice.
@KaethiElfriede Ist unterschiedlich. Mal alles okay (wenn ich ne "gute" Phase habe). Mal Symptom-Verschlechterung während der Periode, momentan sind die Tage um den Eisprung herum problematisch #Wetter#PEM
Wer sich um Dekonditionierung sorgt, rufe bitte laut nach biomedizinischer Forschung!
Und guter Versorgung, damit Menschen nicht alles verlieren, während sie sich lediglich um Behandlung und Anerkennung kümmern.
Ach, und keine Aktivierung bei #PEM. Sonst droht Bettlägrigkeit.
Wer sich um Dekonditionierung sorgt, rufe bitte laut nach biomedizinischer Forschung!
Und guter Versorgung, damit Menschen nicht alles verlieren, während sie sich lediglich um Behandlung und Anerkennung kümmern.
Ach, und keine Aktivierung bei #PEM. Sonst droht Bettlägrigkeit.
A sedentary after-school meeting brought my Heartrate right back down. HR in mid-80s (bpm) as I walk on the level. Up to high 90s with the slightest uphill slope!
Let's see how I cope with the supermarket shop; will people hear my armband vibrating?! 😄
#LongCovid#PEM
Die Trainingsobsession beruht wahrscheinlich auf der Fehlvorstellung, dass wir ausschließlich rumgammeln.
In Wirklichkeit bewegen wir uns genauso viel, wie die Krankheit zulässt. Und oft etwas mehr.
Dekonditionierung passiert erst zwangsläufig im schweren Stadium.
#PEM#MECFS
Absurd, absurder, Training bei #PEM.
Erst in Rollstuhl oder Bettlägerigkeit therapieren, und danach das Bild der unfitten Patient*innen bemühen, denen da rausgeholfen werden soll?
Das wird in Zukunft ein teurer #Behandlungsfehler sein.
#WirHabenEsEuchGesagt!
#MECFS
Joachim cannot wear this T-shirt around Mila.
The words printed on it cause cognitive overload and make her crash.
A few years ago, before Mila became so severely ill, I read a similar account about @DafoeWhitney and could not possibly imagine.
#MECFS#PEM
Sonne tanken tut so gut, LDN wirkt so langsam...
So gerne würde ich einfach den ganzen Mittag im Garten arbeiten... da bräuchte ich keine aktivierende Reha...
#MECFS#PEM
Thankfully, no lesson to teach for the next hour, as the vibration-alert was pretty much constant as I left my classroom, walked to the lift (elevator) & then onward to my office.
Must put my feet-up & recover, for Year 8 later this afternoon...
#LongCovid#PEM@robinthephysio
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