I find the cognitive impairment the most disabling and demoralizing part of this illness. Information processing is what me/cfs affects the most. A nice term for being able to make sense of the world around you, from being able to process all the cars while driving and distinguish a red light from a green light ( had to give up driving) to understanding what someone is saying or making sense of the words on a page. This is what got me to see a doctor when I first got sick. I got sick with a flu like illness like many of us and it never went away. Six weeks with ongoing fever, swollen lymph glands, sore throat, incredible and overwhelming exhaustion, I just kept thinking I have to get better. It will get better. Then one day I walked into one of my favorite classes in graduate school and got ready to take notes. The professor started talking and I could not understand a word of what she was saying. It was like a foreign language. I looked up and around the room expecting everyone else to be confused but everyone was furiously taking notes. I looked at my blank page and panicked. Im losing my mind. Thats what drove me to a doctor. And its what gets to me the most today. Since me/cfs is progressive for me I just keep declining and declining and losing more and more of my mind. Its so hard to think clearly. Im confused most of the time now and can no longer do the things I love like writing, studying French or simply learning something new or reading a book. I dont have the energy to cook, that went away a long time ago, but I remember trying to follow a simple recipe for salad dressing (one Id created myself) and could not decipher it. If I do have a moment of clarity and get to read an article and learn a little something new, its completely gone a half hour later because short-term memory is so bad. And now long-term memory is disappearing too. I no longer remember things I thought Id never forget. Sorry Ive gone on for so long. Just would like to hear if and how others experience the cognitive problems that this disease produces. Thanks for listening.
I am not as bad in this category. But I sure have my moments. Following steps, like say a recipe, has to be a one step at a time thing. Constantly re-reading any directions. My worst thing to remember is maybe days and times. So many misremembered appointments. I check when an appt should be, and five minutes later my brain has got it wrong. I just have to be so vigilant about that, and forgive my self for showing up a day late or a day early, or whatever mess up I can invent.
Doctors will have to tolerate me saying, "I'm sorry, I zoned out. Can you say that again?" I have noticed I can...(More)