We are five weeks in now and I am starting to feel crazy desperate and have very little hope day to day of any improvement. Lying awake worrying about what will become of us. Neurologist gave us reasons for hope but our appointment with him seems so very far away now as we slog through our real MS affected lives. I wonder how much our brainy doc knows of the trenches.
BG does not act, look or seem better to me. He is still detached from the goings on in the house. He got up at 3AM and staggered into the kitchen for watermelon and the words drunken sailor popped into my mind. (I was awake with son2 who had a belly ache, and never did get back to sleep.) In fact, over the past few days his walking seems to me to be worse. In spite of all that, BG did say...he does not want to jinx it... he might feel a little better today. I am not sure what that means but I know this: MS is a crazy disease. An exhausting disease. Big Guy has slept and slept and slept. And I am fatigued beyond description by the worry, the tests, the phone calls, the googling, IV stuff, the fear, the constant vigilance, the utter disruption of our life rhythms. By caring for and worrying about the kids. By trying to hold things together, to get food, to keep the laundry going and all of that. And the loss of my partner as a functioning person who could help with a sick child.
No comments:
Post a Comment