Lousy

There's no other way to say it: I've been feeling lousy. Mornings, which used to be my "good" time have become very difficult. I can't get myself going until 10 or so. Some days I never get myself going - those are the days in bed. My spouse and I were talking last night - about the last 2 years at this time, which we remember well. Two years ago I had just come off treatment and didn't yet know it hadn't worked and I was feeling pretty well. Our daughter was crowned homecoming queen; we took a trip up north to see the fall colors and I recall feeling especially well. I was certain I had been cured. I felt as well as I had since prior to my diagnosis in early 2006.

Last year at this time, I was teaching 2 university classes. I'll admit, it was a bit much and I struggled to do it - not wanting to give that part of me up. I was stubborn and wanted to continue nursing so I fought to keep my profession. But I had a mix of good and bad days and an occasional day in bed. I only canceled class once due to illness. Work wiped me out and on my days off, I usually just relaxed.

Flash forward to now. I spend 3-4 days in bed a week. I can't even imagine working on a regular basis. I do a bit of consulting....all done from home, and I can do that quite easily. I don't even care if I work as a nurse anymore. My ability to go to any certain event is less than 50% and I'm so accustomed to disappointment it seems as normal as a root canal. I cancel appointments on a regular basis. I struggle with overwhelming fatigue, pain, loss of appetite, vomiting, constant headache and difficulty sleeping.

As we had this discussion it made me a bit fearful, no that's not the right word. It made me sad for what lies ahead. It isn't going to get better. Not ever. The new protease inhibitor is not recommended for me (genotype 3) as it does not work on my type. There is very little hope.
And with all this I have to push forward and try to stay positive, all the while knowing I am slowly dying and I will never have my life back. Not ever; things will just get slowly worse. It's a big pill to swallow.