Being disabled isn’t easy. There are common issues that patients must face — every day — when trying to navigate life with ME/CFS.
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.
Patient discussions
Mornings vs. evenings:
Living with ME/cfs is hard. But why do mornings seem to be so much harder for some of us?
Why do some of us with ME/cfs feel better at night?
Cooking is a pain:
ME/cfs presents many challenges to the basic activities of daily living for many people. One of those challenges is cooking. How do you survive?
Listening to music:
Music is for many people an uplifting and spiritually rewarding pleasure. Have you lost the pleasure in music since falling ill?
Driving difficulties:
Are you okay with driving? Does driving trigger cognitive exertion that can cause you Post-Exertional Malaise (PEM)?
Reading books:
Looking for books to read about ME/cfs? Written by people who understand? There are many books about diagnosing, living with, and managing ME/cfs!
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:
Why are there so many abbreviations in ME/cfs? What does it all mean?
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:
Insomnia is one of the most frustrating symptoms that ME/cfs patients deal with. A noisy environment only makes sleep harder to come by. How do you deal with a noisy environment while sleeping?
Hot baths:
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?
Weather:
Have you noticed that your symptoms act up a couple of hours before a rain storm? What does that mean? Do other people experience this?
Sun exposure:
Many people with ME/cfs report that they become groggy and weak after sun exposure. Does this happen to you?
Easily startled:
Have you noticed an extremely exaggerated “startle response” since you developed ME/cfs? Do sudden, but minor, noises leave you jittery or even shaking?
Self-experimentation:
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:
Phoenix Rising member WantedAlive has written a series of comic strips about living with ME/cfs. Hilarious!
Donating your body to science:
Have you ever thought about donating your organs to ME/cfs research after you die?
