Two examples of how ME/CFS has become my "new normal"

I rate my health on a daily basis, and then average those numbers at the end of each month to track my progress toward healing.  Generally the trend has been upward over the last two years, although the progress has been uneven and month-over-month improvements have been minuscule.  Slowly, those minuscule improvements have accumulated into more significant improvements.

The challenge in tracking health is to make sure that my reference point remains the same and that I'm not simply getting more used to life with ME/CFS.  As I've written about before, I try to keep objective measures in place to make sure that doesn't happen.  Even still, there were two recent reminders that, while I have improvement with treatment, I have also simply become more accustomed to being ill.

1)  Yesterday I went to the local "lab" to have blood drawn.  When the nurse checked my pulse, my resting heart rate was 77 bpm.  The nurse asked if I had  run or jogged to the lab.  I said no, and reminded her that I had already been sitting for 10 minutes. She expressed surprise that my resting heart rate was so high because I look "in shape."

(A true "resting heart rate" is measured first thing in the morning before sitting up.  I'm using the term loosely here.)

I haven't used my heart rate monitor (HRM) in over a year because I've been focusing on other forms of treatment and pacing and I can't keep up with everything at once.  Thinking back to when I was using my HRM, my resting heart rate was usually in the high 70's to mid-80s even back then.  (That's actually a pretty good resting heart rate for a PWME, but not good for a healthy man my age.)  So despite some improvements over the past year, my resting heart rate really hasn't improved at all.  It is still surprisingly high to health care professionals.

2)  I've been having shortness of breath (SOB) all week.  This is my most mysterious symptom. Despite all my tracking and graphing of SOB over the past few years, I still have no idea why it comes and goes.  It seems utterly random.

Tuesday was a very bad day for SOB.  I felt hungry, almost desperate, for air all day.  I remembered back to a day I felt this same degree of air hunger during my acute phase, just after I had been diagnosed.  It was scary.  I could think of little else all day and I eventually went to the emergency room of the local hospital, worried that I might need immediate treatment of some kind.

Now that same degree of SOB barely fazes me.  Although the sensation of air starvation is equally severe, I simply go about my day as if everything were fine.  It has become a part of life.

My conclusion is that while most of my perceived improvement over the last two years is real improvement, at least some small part of it must be attributable to me adapting to life with ME/CFS. I've tried very hard to keep my standards consistent for tracking purposes, but I don't think it's possible to ever keep them perfectly even over time.