With no Medrol in my system, I feel blah, my eyes don’t see very well and everything hurts. I am too weak to hold up my head or my arms or to easily move my legs. It sucks to be back in this dreary place where it’s hard to breathe 😦 I alternate between caring about my plight and feeling like it’s all futile.
In an effort to take my mind off of me, I binge watched all 8 episodes of season 3 of the TV show Granite Flats. If you haven’t seen this show before, start at episode 1 or you won’t have any idea what’s going on. It’s addictive. I hate most TV shows, but have watched the first 2 seasons over and over and over again. Season 3 is so much more intelligent and intersting than most TV!
The problem with watching stuff is it’s hard to stay still and hard to focus. I will easily be able to watch each episode over and over without seeing and hearing everything or catching all the nuances.
What really sucks is coming back to consciousness in real life. All I want to do is sit here and cry. I don’t know what to do next. I just want to feel better. “Normal” people get sick and know they will get better eventually. Terminally ill people get sick and know they will die sooner rather than later. Then there’s chronic illness and poverty. It just goes on and on and on and on. No expectation of feeling better and no knowing that it won’t last forever.
By teasing me with IVIg to make me feel alive or Medrol to make me able to breathe and talk….I remember and long for that relief and ability. Then I get stuck in this forlorn place with only memories and nothing ahead. No treatment plan, no hope for getting any better. I know if I get bad enough, I might get more IVIg, but even that is doubtful. The neurologist said the hospital had to fight insurance to save my life in February. The insurance company keeps pressuring me to sign a DNR…do not resuscitate order. They want me to drop dead and quit costing them money.
Most of my life is spent sitting in my chair, looking out the window or at TV or the computer screen. I get the simulation of a life, but feel like a very alone observer of what’s going on.
It’s a good thing I have Olive to cuddle up with me from time to time.