Monday, September 27, 2010


I might get to find out exactly which of the human gamma retroviruses I have.

A week ago I got a letter from VIP labs saying that since I tested negative last year for XMRV I could get this test free. I don't even need to send in any more blood. Which is funny, because last year I was told my test result was "inconclusive" and that I needed to send in more blood, so I did, and then the next day they wrote and said my result was positive after all and that the additional blood wasn't needed.

The letter said this was a one time offer and I had to have this form completed and signed by myself and my doctor by September 21. It was September 20th.

But, I did it. I don't know how long I until I get results, but the letter asked me to allow "sufficient time."

Meanwhile I'm sticking to my decision to hold off on any major treatment decisions for awhile until more is known. And while I wait I'm going to keep trying to do the best I can with my program of good sleep, good nutrition, gentle exercise, low stress.

I haven't been doing as well this last summer. At some point I decided I'd be happier if I stopped trying so hard and gave up. I stopped reading about CFS online. I stopped trying to research anti-retorviral therapy and stem cell therapy. I only considered these things in moments of panic when I was at my worst, after days spent in bed afraid I'd never get out.

Then I thought since I was getting worse, not better, in spite of my strict diet, why shouldn't I let myself eat french fries whenever I wanted?

Then I thought that there was no point in working so hard to sleep at night and be awake during the day if I always felt better at night anyway. Why not stay up late and and sleep as late as I wanted?

But I've had terrible headaches almost every day this week and I think it's from the junk food. And even though letting my body sleep when it wanted might actually be a good thing, going to bed at 10am and waking up at 10pm is not as fun as I remembered.

Of course, the real reason I kind of let myself go was because I needed the rest. I've really been at a low point, energy-wise.

Today is a good day though, in spite of the 110 degree heat. I don't have a headache. I woke up before noon. I was able to unload the dishwasher myself for the first time in months. I can stand up without too much effort. I can read, I can write. I still need to lay down and sleep after I eat, but all in all this has been a good day. I really hope I get some more.