But understanding the unique issues surrounding ME/CFS might help new folks learn how to cope with it.
No doubt about it, Ahimsa. This thread has been awesome for a new PWC like myself, hearing "coping" wisdom from many of you and reading some of the best observations about the challenges of ME/CFS that I've ever heard articulated. I've tried many times in my own brain to formulate some sort of explanation to others why feeling like crap all the time makes regular activities difficult to impossible, but it usually comes out sounding like an excuse or it sounds overdramatic to those that simply have not experienced it. Thank you Diesel for starting this thread. And to Ixchelkali, Ahimsa, and others here for your insightful descriptions that have opened wider my understanding of my own illness.
I'm now 33, and was in perfect health until age 29, then started experiencing a lot of joint pain and had unusually poor recovery from regular activity, until the limiting effects of CFS got so severe that I finally became disabled at age 31 and can no longer work, play sports, or do virtually anything that requires mental or physical stamina, and for the past 2 years have been sick every day with different degrees of PEM (and it's evil twin brain fog). Sometimes I can pinpoint the malaise and flu-like weakness to an exact activity, sometimes it's cumulative, and sometimes it's there for no good reason at all. It definitely gets more severe with more activity to where I can say with confidence, "the more I try to do, the sicker I become." I describe PEM (which for me intensifies and ebbs at different points during each day and night) as "flu-like fatigue", "flu-ish tremors", or "daily immune episodes." It's taken me a long time to realize the push/crash phenomenon and to stop trying to rebel against it (although I do rebel every once in a while just to try to feel normal again or to be a fun dad for my two sons instead of laying in bed; which of course comes at a big price either immediately or later). So, now after a few years of trial and error, I'm starting to understand that I actually have the power to make my condition worse (by pushing myself), but sadly I do not personally have the power to make my illness go away, or even get myself past a certain fragile plateau that is achieved (only temporarily) with 100% restful, therapeutic activity. In short, I can do many things that make me feel worse, but very little that helps me feel even temporarily better.
Ixchelkali, I think your wisdom about re-programming your instincts to not fight past the illness, but to go with it, is so helpful. I believe there are many PWCs that have not learned that yet (or know it, but still guilt themselves into doing damaging amounts of activity). We need to give ourselves grace. Your advice could save some degree of suffering for a lot of people.
Getting back to this thread's main question, I think some of the hardest things about this illness besides the illness itself are:
1) Little to no medical interventions (yet!)
2) Loss of productivity (affects one's sense of worth as well as devastating to one's finances)
3) Little understanding from the general public
4) Very tough on family members caring for PWC's (although my wife insists my value remains as high as ever to her and our kids)
Finally, I'd like to mention a few silver linings to my illness (sadly, I understand not all and probably not even many PWC's can claim these):
1) More time at home with my family (since I've qualified for insurance benefits)
2) Even though I'm too sick to run, I can walk (between recovery times) and that allows me to occasionally hike on a wooded trail and appreciate the therapeutic beauty of nature (which I honestly appreciate much more now)
3) Has made my viewpoint of God richer and stronger as I see Him working in the midst of suffering, and can find ultimate hope in Him
4) CFS has given me more compassion toward others who suffer
5) Get to experience life at a slower pace, with fewer external schedules to keep, pressures to face, commutes to drive (almost forget what road rage is like), and can invest what little energy I have into things most important to me
6) Friendship with PWCs that would not have happened otherwise
I better stop now or I might give the wrong impression I enjoy ME/CFS!