Home » Mechanics: Illness & Recovery » like a bird on a wire

like a bird on a wire

energy-healing-spiritual-downloads-wallpapersMy 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.

2 thoughts on “like a bird on a wire

  1. Good luck with everything. Just be careful with GET I have heard it can make some people worse. My doctors were all recommending it to me so I tried for about a month and it wasn’t doing anything for me. I’ve found it better to pace everything and listen to my body. I try and exercise at least a little daily (mainly yoga) but I do not do a set amount of time everyday if my body doesn’t like it. That just led to more crashes.
    Don’t let me scare you off trying, it does help some people. Just watch how your body responds to it and if you’re not getting good responses consider changing your plan.

    • Thank you! I really appreciate hearing about your experience with GET. I have my doubts, too, and there is definitely some literature that suggests it can be detrimental. I’m going to give it a shot and see how it goes. I always reserve the right to back out of a plan and try another way. Thanks for your reminder, and I hope you have found things that work for you and that you get better and better :).

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