Week 1: Worse Before Better

I have been taking XMRV treatment for one week now.  I expected to feel worse before I felt better, and I think that is true.  However, it is more of a dip than a plunge.  I take the pill at night, and it does make me feel sleepy.  Now, for those of you familiar with CFS sleep disturbances, you know that this is actually a good thing!  I find I am able to drift off to sleep much quicker than usual, and I"m sleeping more deeply than I have in the past.  However, I'm sleeping longer than I had been by about an hour, and I am slow to get going in the morning.

My energy levels have become unpredictable.  I was used to a reliable "energy window" that would last from mid-morning to early evening most days (unless I overdid it).  Now, I'm finding my energy in bursts.  I'm sluggish; then I suddenly feel pretty good; then my energy abruptly disappears, only to come back again a little later in the day.  I'm riding it out.  I am careful to not overdo it when the energy is there, but to pace myself as usual.  When I feel deflated, I rest.  I've been spending more time in my bed than I usually do, not necessarily crashed or even officially resting, but just kicking back.

I'm not getting much done these days; there are still boxes waiting to be unpacked, but those will wait.  On the flipside, my household is not descending into complete disarray.  I'm still able to do minimal activities like laundry and nagging the kids.  I haven't felt the need to call for additional help, like I was afraid I might have to.

I haven't exercised since the move, for obvious reasons.  No stretching, no yoga.  I think I'll try to ease back into the yoga.  See how well I tolerate it.  I hope I do OK, because it helps so much with pain management.

Ha, once again, all I can say is we'll see, we'll see.