People say that it’s hard to truly understand what someone else is going through, without trying to live one day in that person’s shoes.
If you would like to live one day in the shoes of a patient with ME/CFS, you might begin by listening to some discussions among patients.
The following are some relevant discussions that you might find informative.
Mornings vs. evenings:
Cooking is a pain:
Listening to music:
Are you an avid book reader who has found it difficult to read books due to the weight of the book, the difficulty of reading the print on the page, difficulty with attention, migraines, or other difficulties? How do you cope?
Deciphering all the abbreviations in ME/CFS:
If you just need to talk:
Social isolation is a common problem for people with ME/cfs. Sometimes we all feel a need to just talk to someone. Here are some resources from ME/cfs organizations for when you just need to talk to someone.
Noise while sleeping:
Some find that a hot bath opens up blood vessels leading to tissues where blood flow may be restricted, reducing pain. But this may mean less blood left over for pumping up into the brain, worsening orthostatic intolerance! Against this backdrop, a small 2018 study suggested that a hot bath might normalize Heart Rate Variability (HRV) in ME/cfs. Do you find hot baths helpful or do they worsen your symptoms?
People with ME/cfs are used to noticing weird things with our bodies. Sometimes we do some testing & research, and then we come to an informed explanation for our weird observation. Here’s a great example.
Films and documentaries about ME/cfs:
Did you know that there are many short films and documentaries about ME/cfs? Some of these still need funding to finish their production. Why not donate to some struggling filmmakers, or just curl up and watch some of the many others!
Comic strips about ME/cfs:
Donating your body to science: