Chronic Rants

Last night I went to a Meetup group for the first time in 7 or 8 months. The folks there greeted me warmly and asked what I had been up to, and why I hadn’t been around. And the thing is, I found it hard to answer, even to myself.

I had been thinking about that before I went. At first, I was busy. Then I didn’t feel well. Then I felt better, but I was trying to catch up from not feeling well. It was never a priority – yes, there were times I could have gone but chose not to. But also, lately I have either been feeling too ill to go out, or else I’m feeling pretty good and I’m using that opportunity to catch up on household chores, fun projects, and spending time with close family and friends.

Most recently, the surprising thing is that for the past month or so, I have been feeling so much better, while at the same time I feel that I am struggling more than usual. This is new to me, and hard to wrap my head around, much less describe to someone else. The closest I have come so far is a battery metaphor, since this is mostly related to energy and fatigue (though other symptoms play a role, too.) My battery never gets to 100% anymore, and probably never will. But lately I feel like I struggle to get my battery as high as it had been. If prior to the past month it sometimes got to 65% on good days, now it never gets above 50%.

But here’s the surprising part: it goes down more slowly. Before, it wouldn’t take much for me to go from 65% to 50% to 40%, but lately I feel like I can do a lot more at 50% before I drop down to 40% or lower. It’s an odd feeling. I’m more tired on my best days, but I can do more because I stay at 50% for a lot longer.

I want to know what this means. Is it a sign of improvement or a sign of deterioration? I believe it has to do with going off of an adrenal supplement. The goal was to stop the supplement for 2 weeks so I could take a test, then resume it. The first few days were horrible, but then I actually started to feel better. I had to put off the test for an extra week because of scheduling issues, and by then, I wanted to see what would happen. After all, I really did feel better than I had in a while. Now it’s been 5 weeks and I am anxiously waiting for the test results. What will they show? Will I need to go back on the supplement? Will I instead need the prescription that we were contemplating? Or is my body better off on its own? I am figuratively chewing my fingernails in anticipation.

My body is a series of mysteries. Sometimes there are answers, but far too often I never find out what is going on. I have learned to accept that for the less pressing issues (though sometimes I later find out they were more important than I had realized) but since fatigue has been my most disabling symptom for many years, this is tantalizingly close. I can almost feel the answer to the mystery dangling in front of me, but I can’t quite reach it. I am aching to know, though, if I am improving or deteriorating. Could I be on the verge of a breakthrough? Or is it the edge of a downward slide? Maybe the iron infusion that I had dreaded is having an affect? My fear is that the test won’t give conclusive results, and I won’t know why I feel this way or how to proceed. I should find out any day now, and until then all I can do is wait.

I see doctors constantly, and when they ask how I have been, it is almost always hard to explain. But now the answer is that I feel both better and worse at the same time. I hope they can help nudge towards more of the better.