Blue Sunday 2024
Today is Blue Sunday 2023 a day when we enjoy pastries, celebrate our communities, and bring hope to millions missing by donating to Myalgic Encephalomyelitis research.
This Blue Sunday I am deeply grateful to my amazing care team and all my incredible family and friends who gathered with me to celebrate this special day.
Over 1 in 100 people suffers from Myalgic Encephalomyelitis aka MECFS. 25% are housebound or bedbound with severe ME. 70% are unable to work.
I lie between severe ME and very Severe ME. Completely bedbound and dependent on IV fluids and dozens of prescription meds and injections. But still able to communicate with those I love.
It is a privilege I do not take for granted. Both my ability to communicate and having such an incredible community of friends and family to do so with.
So many people with ME are left alone. Despite being more disabling than most cancers, their disease is so stigmatized that they do not disclose or do and are ostracized or simply told to get over it.
Lack of disclosure leads to further stigma. That is why days like Blue Sunday are so important. To create accessible spaces for pwME to interact with others. To bring visibility to ME / CFS and long Covid through a lighthearted day.
ME is truly an invisible Illness. "Mild" (50% functional reduction) patients are invisible because their illness cannot be seen on the "good days" they go out. Severe patients simply cannot be seen at all.
@theslowlane.me has created a truly special event that pwME of many severities can attend. Where those who are alone can be a part of our ME Community.
ME is a severe neuroimmunological disease with no FDA approved treatments and no cure.
Go to the link in the bio of @theslowlane.me to donate to the ME charity of your choice or to @mutualaidforme to donate to this year's ME Awareness mutual aid drive and help bring hope to the millions missing and millions More with ME and long Covid.
To learn more about ME see my recent ME Awareness Month posts.
To help the ME community in materially supporting each other follow @mutualAidForME.
