#pacing
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Sylvia & Netti
I 
#VioletAffleck. She wears an N95 everywhere in public, she is right, & she is a force to contend with. Wicked smart, 19 years old, & she is already a great leader!
#ClimateChange #Wildfire #Covid19 #CovidIsNotOver #LongCovid #BirdFlu #FEMA #ExtremeWeather #WindStorms #MECFS #DisabilityJustice #FollowTheScience #CleanAir #FarUVC #PublicHealth #BeProactive #Pacing #WearAnN95
A Chronically Ill Earth: COVID Organizing as a Model Climate Response in Los Angeles
Yale Global Health Review · A Chronically Ill Earth: COVID Organizing as a Model Climate Response in Los AngelesBY VIOLET AFFLECK I spent the January fires in Los Angeles arguing with my mother in a hotel room. She was shell-shocked, astonished at the scale of destruction in the neighborhood where she raised…
Für Betroffene von #mecfs in #Freiburg gibt es zur Unterstützung im Alltag das #pacing Team, das ein Kontakt- und Koordinationspunkt zwischen Betroffenen ist und denen die viel oder auch wenig helfen wollen.
Wurde eben bei der #liegenddemo vorgestellt.
https://pacingteamfreiburg.de/
@freiburg weiterteilen maybe?
pacingteamfreiburg.dePacingteam Freiburg – Wir helfen Menschen mit MECFS im Alltag
Daily Spoons now shows a chart of your spoon history. This might help to identify pattern.
I’m adding charts to my spoon management app. Still work in progress.
(No third party lib, no #SwiftCharts, no #SwiftUI)
My daughter has a #wordpress site to act as her art #portfolio and prints shop through #printify. This is a bit heavy & slow way to do things but I wasn't well enough to build her anything custom.
I'm now a bit better at my #pacing so was thinking about building her a new static site that plugs into her printify shop.
Anyone have ideas about what toolkits have wordpress import, handle image compression well and integrate with printify? #webdev #spoonies #mecfs
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Here's a little executive function tip based on my Splines Theory.
If you're having trouble starting a complicated and boring task, give yourself time to "load the splines." Splines are just my silly word representing the fact that ADHD and autistic people are more detail-oriented. We have a hard time accessing an idea by its summary, and need to think about the whole system with all its parts (splines) in order to grapple it. This takes time and energy.
But the good news is, reticulating splines is mostly a passive activity. First step, the hardest, is communicating to your brain about what it needs to load.
A few hours ago when I started gathering paperwork for taxes, I felt incredibly overwhelmed and my chronic pain was activated. So I pushed myself to kinda get started (updating my list from last year, opening the email folder, creating some folders on my computer), but then I hit a wall. Under intense overwhelm, I couldn't get started turning those emails into PDFs.
But my brain knows what it needs to do. It just needed time. I entered my passive splines reticulating phase, which can take anywhere from a few hours to a few days. Since I only have a week to get this to my CPA, the sooner I started the loading process, the better. Most of that happens in the background. The hardest part was telling my brain to start, which I did by giving a glance to the body of details I will need to absorb.
Then I went did a couple of hours of paid writing work which my brain normally expects on a Monday (so that went easier). And then back to taxes to see if things were flowing better.
And they are! I still hate it! But now my mind has an understanding of the task and it doesn't seem impossible.
I will work on it until I feel sick and foggy again, then I will pick up tomorrow where I expect it to go even more smoothly.
Here's my 2013 post on Splines Theory of neurodiverse executive function.
#taxes #ADHD #ActuallyAutistic #pacing #MECFS
https://www.corbden.com/2013/10/splines-theory-spoons-metaphor-for.html
www.corbden.comSplines Theory: A Spoons Metaphor for AutismA blog about indie publishing, urban fantasy, and geek culture.
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@farfadoc : le site de #MillionsMissing offre sur son site de la documentation à consulter pour les médecins.
Ci-joint, le site belge pour les professionnels...
Il y a aussi l'association #AprèsJ20 à qui vous pouvez demander.
(si seulement tous les médecins étaient comme vous!)
Mon interniste m'a recommandé la lecture d'un article dans la revue Nature aussi. Mais c'est de la recherche et pas des infos pratiques pour les patients.
Appliquer le #Pacing essentiellement!
https://www.millionsmissingbelgique.com/professionnels-de-sant%C3%A9
MMBelgiquePour les SOIGNANT_E_S | MillionsmissingbelgiqueContenu dédié aux soignant-e-s concernant l'encéphalomyélite myalgique ou syndrome de fatigue chronique (EM/SFC) : statut de l'EM en Belgique, critères diagnostiques, traitements et comorbidités
Long, personal details about living with chronic illness, journal entry, bunnies
How to keep gardening with arthritis, back pain or other joint problems - pacing is the key!
#gardening #pacing #arthritis #backpain #gyo #exercise #phyio #physiotherapy #keepactive
Wieder was gelernt zu den Weihnachtsfeiertagen: Mein
#Pacing
funktioniert gut solange ich in meinen eigenen 4 Wänden bin und alle "Termine" (Arzt, Besuch v. Freunden) selbst bestimmen kann.
Im Familienkreis kann ich mich nach wie vor nicht durchsetzen und für mich selbst einstehen und NEIN sagen.
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“Anything worth doing is worth doing slowly with many breaks”
#Pacing #chronicillness #MEcfs #LongCovid #ChronicPain @chronicpain #spoonie #spoonies
@chronicillness @spoonies @longcovid @mecfs
One for all my friends suffering with ME/CFS and Long Covid.
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Alla olevassa artikkelissa asiantuntijat vastaavat Hélène Virrantauksen ja Markku Sainion HS:n Vieraskynässä 17.10.2024 olleeseen artikkeliin long covidista.
”Keskeisin nykyisissä hoitosuosituksissa suositeltu menetelmä on #pacing 
Pacing- menetelmää noudattamalla sairastunut voi säädellä aktiivisuuttaan sopivalle tasolle ja ei täten kärsi oireista enää yhtä voimakkaasti ja oppii ennakoimaan rasitusta.
Kauppalehti · ”On huolestuttavaa, kuinka huonosti long covid ja sen kansanterveydelliset vaikutukset Suomessa tunnistetaan”
I was very impressed by this new 6-minute video.
I thought I would do a thread of the different versions they have created to accommodate sensory sensitivities.
Firstly here's the full color & background music
https://www.youtube.com/watch?v=gKWk99Fsd_o
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid #LongCovid #PEM #pacing
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"I quickly realized that I needed to use the watch contrary to its intentions. I had to counter its design. Whenever the watch informed me I had walked far & needed to keep going to reach a new distance goal, it was my cue to sit down. Because the watch provided me with 'hard evidence' to compare my experiences with, I could actually begin to piece together what worked & what exacerbated problems for me,"
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"It isn’t ideal for people who are ill to be measured by apps intended for sports and fitness. Being compared to a healthy body and asked to do more, when one’s own body doesn’t want to, can be an unpleasant experience. It gives feedback to people who are ill that isn’t appropriate and can trigger anxiety," she says.
#LongCovid/ #MECFS ist eine echte Krankheit. Es sind Funktionen im Körper kaputt - welche genau, weiß man noch nicht. Heilung gibt es noch nicht. Es kann bis zu einem gewissen Alter jede*n treffen. Nicht nur nach #Corona, aber Corona ist eine besonders häufige Ursache.
Was für Betroffene wichtig ist:
- ernstgenommen werden
- Ärzt*innen, die Hausbesuche und Online-Sprechstunden anbieten
- Therapeut*innen, die sich mit #Pacing auskennen (Üben ohne Überlastung)
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Tijd voor een heel rustige middag om de HRV weer op te krikken, zegt visible_healthapp
Luisterboek, ligstoel... #EffeLiggen
#LongCovid #pacing #balanceren
Heute war der Start meiner #LongCovid Reha. Beim Ärzt*innen-Aufnahmegespräch wurden die Reha-Ziele gleich verändert: Statt "Leistungssteigerung" ist bei mir "Crashs vermeiden" am Programm das Ziel. #Pacing Der Fahrrad-Ergometer-Test wurde auch gestrichen wegen #PEM-Vermeidung.