Monday, January 14, 2013

the disappearing me

It's 22:33, I'm still awake but tired. I don't want to go to sleep because, although I used to be a night person, I now fear the night. I want to wake up. I'm afraid to close my eyes for fear I won't open them again.

My mind plays tricks on me, sometimes psyching me out, sometimes giving up. I couldn't feel my feet about two hours ago, they were freezing. My wife, ma belle, felt them and asked me to put the pulse-ox on my finger to read my numbers. For once, I didn't care about my numbers anymore, knowing that if they were low, I'd only worry that much more. Surprisingly, the number was irregularly high for me. Then again, numbers aren't symptoms. Dr. Cardio-man always told me it's how I feel and not the numbers that counted. Well, now I feel scared, sad, frightened, angry, overwhelmed, confused, terrified, ... are those enough feelings Dr. Cardio-man?

Every time my nose runs with blood, I know this is the beginning of the end. In reality it's simply my nose not being able to deal with the high oxygen output, but the bright red liquid running down my face and dropping all over the place scares me. I haven't seen that much blood in so long. Daily. I've always been squeamish with blood. I wonder, will it ever stop?

I'm determined not to have any breathing crisis, not start withering before I finish some things. It's amazing how my goals/bucket list last year included wonderfully wicked things like seeing a pyramid. Right now, they include simple, mundane things like finish ma belle's necklace, and jacket I was about to sew her before all this happened. The sad part of that little goal is that I don't even have the energy for something I could whip off in a weekend. I had all sorts of little bedside projects in mind, things to give people as my "parting gift". It's hard accepting another stage of this illness. I lived in denial for so long, pushing through, doing anything I wanted, within reason of course.

Now I wait. I keep busy to avoid driving myself crazy, looking at the Palliative Percentage Scale and quizzing the visiting nurse how long she thinks before I enter the next stage, one where I am helpless, bed-bound and can no longer even type. When I arrived home I had to adjust, and successfully I think, as I can type without problems now, but in small spurts. Now the question remains: how long at this plateau, where I can type, knit for a little while, sit up in my bowl chair and have a visitor? How long before I become NOT ME?
How long before I lose ME?