I think the Valcyte has taken me down a notch after 60 days now. For some reason I erroneously thought that because I made it through 8 weeks with some physical effects that somehow I'd escaped.
The past couple days I feel like my body has down shifted into first gear. I'm fatigued and kind of weak. My muscles, especially my back, are incredibly achey. Surprisingly so. I also feel a sort of apathy. The apathy feels almost protective, as if its a way to conserve energy.
At the same time, I've having more trouble sleeping. I've read these are all sort of typical experiences of Valcyte. They are listed as side effects but could also be signs the Valcyte is working.
Lately I've been thinking about how this illness really forces one to redefine oneself on every level. For me it's a slow process because first I had to get out of denial about how serious this is. While I know it at one level, on another level I like to tell myself stories that maybe I can fix this somehow. I do believe I can make myself "weller" but I don't think this is curable. I still remember the sense of relief I felt when the rheumatologist said "what you have is viral" (I thought-oh, good because that means it will go away), "that is very serious and can be very debilitating and is called something like chronic fatigue although that is a horrible name for this (it still didn't sink in because I thought 'oh good it's chronic fatigue-easy to fix with some rest'). He could tell I didn't get it so he continued "it's like HIV but it's not or Hepatitis C but it's not" (I felt puzzled at this point thinking 'but those are serious illness/diseases'). On another level I knew though because I asked him what my quality of life would be like. That's when the room became very still and he looked right into my eyes and said quietly, "I don't know." That's when a wave of anxiety and fear washed over me.
If I get the energy I might go through the various sites I visit and write down all the tips people have written about being on Valcyte. That's something that would have been really helpful to me. My experience so far is that it's been both not anywhere near as bad as I expected but at the same time worse that what I thought.