One last thought from my pacing webinar tonight — group healthcare appointments are awesome and I don’t think most people realize that until they try one.
The Long Covid Clinic and the BC-CLMF both use group appointments and they have really won me over. You get everything you need, PLUS other people ask questions you didn’t think of, forgot, or were too shy to ask. People also ask about things that haven’t happened to you yet so you can be prepared. You usually get 60+ minutes too! Big fan
Gosh i love occupational therapists. I’m at a webinar about pacing through summertime, and this OT just shared a “success story” from a client who got a banner for a party they hosted. Instead of saying “happy birthday” the banner said “please leave by 9pm”.
This is the same OT who apologized for not being able to put someone in a coma to reset their pain responses. A queen.
Aww, how lovely to see an interior design youtuber give a great 30 second explanation of ME/CFS. Bonus design tips about how to put a bed in your living room.
One more data point in favour of the battery metaphor instead of spoons, I suppose.
Friends! Comrades! Did you know you can put a salt rim on any beverage? I recently had an icy soda water with lime and a salt rim and this is my whole personality now.
Getting weepy about Violet Affleck pointing out that Planet Earth experiences post-exertion malaise, and people with ME/CFS know the hard truths about how to deal with that.
Because pwME know that a crash is unpredictable and impossible to reverse, the goal of pacing is to not encounter the symptoms at all. Success is measured not by a fast and furious response at the moment of crisis but by the absence of a need for intervention. But US society, like a new pwME still unfamiliar with the costs of PEM, is staring down a cycle of “crashes” from which we won’t be able to easily return
Spoonie lifehack: if you have one of those instant read thermometers for cooking, use it to figure out your optimal bath temperature and then flawlessly achieve it forever.
Many people suggest around 105F/40.5C but I aim for 110F/43C when I have joint pain.