Fatigue

My weight continues to plummet like a dot-com stock. The good news: as a result of yesterday's diuretic extravaganza I lost another 2 pounds. The bad news: I still feel like I'm retaining a lot of fluid in my body. Makes me wonder how much I really weigh. It's going to take a lot of Ben and Jerry's ice cream to get it back up.

That's not to say I don't feel any changes. It has almost totally drained my groin and upper legs; it is now evening out my waist and arms. I was able to sleep on my side last night without losing circulation, so there's that.

Oh yeah, the fatigue

Now that the edema is being taken care of, fatigue is now my biggest barrier to full recovery. This is a normal complaint for amyloidosis patients (and stem cell recovery patients in general). Your body remains in serious trauma due to the immune system destruction and reengraftment; such a event takes a lot of time for you to recover from.

Note that I am using the word 'fatigue' and not 'tiredness' -- the two are completely different.

• Tiredness: Your body says, "hey bud, you're running out of energy. I suggest that you get some rest, you know, when it's convenient for you."
• Fatigue: Your body says, "the system will be shutdown in 5 minutes for emergency maintenance. Please log off now!"

So when you get fatigued, there's a nap planned for you in the immediate future. Between my hectic nights and unscheduled naps, I sleep on average about 11-12 hours a day. When I am awake I still cannot push myself. Most of the time I am on the couch or doing something sitting down, as I simply just don't feel like doing anything -- even the things that I enjoy.

Patients I've spoke to say that they still experience fatigue six months after the procedure, but that most of it subsides after three months or so. It's very frustrating when your mind wants to get back to normal life, but your body simply won't allow it.