Well, it's been difficult. (This won't be very articulate, because I'm in a brain fog, but need to write.)
I'm back to being almost completely bedbound. I just reached that point...the point where I just know I can't hold on any longer. Something needed to change just to ensure my survival. I had reached the point where I would smile for others, and then scream and sob as soon as I got to my car. I have reached the point where the time between lessons is no longer enough to get me through the lessons themselves. I'm very uncertain how much longer I will be able to work at all. I planned on going two more months, but I need to bow out early. I've canceled all piano lessons at the church. So no more daily drive to work. But even with lessons at the house, I don't think I'll be able to do this. It's simply a matter of acceptance. But it's also a challenge for those closest to me. To accept that I am falling back down. That I'm back to that place where I need to be taken care of. That's a challenge for anyone to accept, certainly a 25-year old woman that has had glimpses of independence and adult life.
So, the following symptoms are the reason that I am again restricted to bed about 23 hours a day:
Nausea, worsened to the point that I'm eating very little
Vertigo has returned, especially when I don't wear a collar or traction
Orthostatic intolerance: tachycardia and dizziness
Weakness: each limb seems to weigh an extra 20 lbs., more at times
Lethargy
Intense head pain: the ice picks over my eyes are back! And my temples seem to be permanently swollen
Cognitive deficits:
-brain fog (feeling really out of it)
-concentration/focus is a challenge
-difficulty talking or writing with any other sensory stimulation
These symptoms are only relieved by laying flat or with traction. Unfortunately, my traction options both have some pretty major flaws. (one blocks the hole in the back of my skull, squishes my ears, and hurts my jaw; the other pushes so hard into my rods that it creates a whole new kind of headache) Even the padding in my collar under the chin is thinned out so much that it's becoming uncomfortable. I use Kleenex for padding, but I think I need something more.
Anyway. As soon as I think I'm at a healthy level of acceptance of my limitations and my lifestyle, it gets worse. Then I have to learn to accept even less from myself.
Some people think that this is just one of the many ups and downs of my condition. That's partially true. But my good times are getting shorter and less positive. And my bad times are now unbearable, and lasting longer. So while I am still a study in oscillation, it is clear that my condition is still steadily deteriorating, overall.
I'm trying to accept this. Then, I'll be able to help others accept it.
