Anyway, with regards to this job, I'm getting rid of it for several reasons that include the fact that I am just not able to work 6-7 days a week (days & evenings) anymore, my health care providers want me to take it easy (for real, not my stubborn version of easy) and my family.
Which brings me to the other very tiring events of the past 28 hours. My wife and I had "the talk" with my blood family. It was long, it was difficult, it was honest and it was different. It wasn't a fight (like we are all known for) but it was not pleasant. I actually shed a few tears (then hid them in my wife's shoulder). I don't do that in front of my family. It's very hard telling people that things are declining and are not going to get better when you look (and feel) OK. That was the first hour and a half. By the time hour 3 rolled around I was completely exhausted. I could barely talk anymore and needed to go home to be hooked to my machine to breath. There were other items to discuss which meant that I was not going to breath for another little while still. By the time I got home I felt like someone on death's door. I could barely crawl up the stairs. I could barely feel my own hands and feet again - a symptom which was supposed to be relieved by the phlebotomy I had 10 days ago. It's scary not feeling your own limbs, especially when the numbness appears suddenly up your arms and legs leaving you feel like a tree stump. Nothing to move or feel except your own trunk. Then, you become helpless. At 35 I become a child again, needing help removing a sweater because I couldn't feel where the arms are. Those are the bad days.
Once in bed, I could not sleep. I was so unbelievably drained from the day. I felt like my heart would, could, just slip quietly into a small, short rhythm allowing my soul to escape from my container and I would have no energy to grab for it back. For the first time since childhood I was afraid to go to sleep for fear of not waking up. I cried in my wife's arms. The last thing I wanted to do to her was leave while we slept. I have so much fear and guilt of her waking up to a corpse.
How does one get used to a roller coaster like this - teetering on both worlds but fighting so hard to stay in this one. How does one get used to a roller coaster that allows the body the ability to work and be productive one day (or week) and the next introduces such weakness that gripping a knife to cut a meal is a challenge? How does one get used to saying everything they need to say to the ones they love without becoming a recording. How does one get used to tentatively moving forward with one eye looking over soul's shoulder thwarting off (the unknown).