My trip to the NIH was anti-climactic. For all of the genuine attention I received from their doctors, I didn’t leave with the kind of answers I had hoped for. The virologists place my sustained, low-load virus in a category of mystery. As in, there is “something off” with my immune system, but there aren’t any safe treatments that will reverse this condition. The doctors I saw will continue to collect data from cases similar to mine and also monitor me, so it is possible that they may come up with a trial treatment in the future. My prognosis is uncertain; it’s possible I could get progressively worse, stay the same, or get better in time. Hoping for Option #3.
What now? The NIH neurologist who met with me had one profound suggestion. She has seen patients who, debilitated by a major virus, need years to recover. We talked extensively about the nature of my symptoms and subsequent lifestyle, so she had an accurate picture of the level at which I am able to function. She suggested that I try a program of bed rest followed by a period of integrating carefully-calculated minutes of being upright and in motion, over a period of months. This basic concept is known as “Graded Exercise Therapy” and can be part of an effective treatment plan for ME/CFS and for POTS.
So, that’s the program I hope to begin shortly, with the help of my family. It’s a bit scary because I have worked hard to be able to do some basic things routinely, and now I am taking many steps backwards and going to decondition myself by being completely sedentary. Also, isolation is wretched. But there is sound evidence for this type of therapy, and I don’t know what else to do. I am praying for and working for a better attitude, because I have been failing in that department lately. The last month or so I have been resigned, ungrateful, and emotionally tapped out. But, unexpectedly, in the last day or so I am seeing little cracks of light. Maybe a few months from now I will miraculously emerge, little by little, like a moth gradually breaking through the walls of its cocoon.
P.S. Soon I’ll be taking a break from the Internet in order to spend a couple of weeks in complete rest. Bye, world. Cheers to fresh possibilities.