So sorry I haven't posted lately. I've been occupied by my writing (imagine that, focusing on real life and not my illness). In particular, I've been participating in the A to Z blog challenge for the month of April on my writing blog. It's been a lot of fun, but I find that it takes a lot out of me.
After two months of treatment, I asked my husband if he could see any differences at all. He said there are hints. I agree.
I notice that I am having more good days. By good days, I mean that I feel lighter, happier, in a good mood, like a fog has lifted from me. I have a little more energy, and I tend to do a little bit more spontaneously -- things like wash my sink, clear the table, empty another box (still haven't finished unpacking!). It's not a big difference in my activity level, but it's definitely noticeable.
Unfortunately, that buzz of energy also keeps me up at night. I have a hard time falling asleep, and when I do, it is filled with vivid dreams and wakings. Which leaves me exhausted the next day, and it takes several days to normalize again. It's a cruel cycle.
Another thing that I've noticed is how horribly deconditioned I am after years of declining activity. I can't help but feel that if I were in better shape, I'd be able to take advantage of my good days and do more with them. It's a nasty catch-22. If I push my activity level, I feel tired and crappy. If I don't, I can't make any progress in my health.
I've chosen to push myself a little bit. I am doing gentle yoga in the mornings. I've bought a pedometer. I walk an average of merely 1,000 steps a day. Before I got sick, it was around 8,000. I try to walk just a little extra. I'd like to get it up to an average of 2,000 steps a day. For now, anything over 1,000 is a victory.
Many people have asked me what specific medications I am taking. I don't feel like I can give that information right now. It would be irresponsible. I don't want to appear that I'm recommending this course of treatment for anyone. I don't know if it works, and even if it does, I can't assume it will be right for everyone. If you are as determined as I was that you would like to try antiretroviral treatment, then I recommend you do your homework, find which drugs target XMRV, and decide with your doctor which treatment is best for you.
2 weeks ago
