It is 7am and I am in bed, the room is dark and all is still. Big fat tears seem to come from my eyes unbidden. These past hours have seemed endless. Hopeless. Unbearable.
I made the now seemingly crazy decision on Wednesday to drive along with my husband to Portland (about 2 hours north) to see my son for dinner. I slept all the way back. Five hours total and my body seemed OK when arrived home at 9:30. By noon on Thursday I was paying a heavy price for dinner out.
My caregiver came over to say her morning goodbye and I was unresponsive. A few minutes later my hubbie came in and together they couldn't get a response from me. At one point he wasn't sure I had a pulse. Eventually I began to come out of it, and for me the fear kicked in. I was disoriented, unsure of time and place. But the worst was brand new; I couldn't speak. For about 30 minutes I could think of what I wanted to say but the connection between thought and words was lost and I couldn't form words. For the rest of the day and continuing into this morning words are elusive and speaking seems like a chore. Honestly, I never considered losing my ability to speak. Dear God, please don't let this be my reality.
At around midnight last night one of the worst cases of laryngeal spasm hit. I was jerked from sleep unable to breath. My throat completely sealed off. Pounding on the mattress I snatched my hubbie from sleep. He ran to my hospital bed and got my rescue med; I took a slug. Like magic I could breath. He held me until I stopped shaking and went back to bed. I lay there in the dark, praying and crying. When would it happen again?
My brain feels like it is packed with wet pink building insulation material. My body feels like it is out of my control. I am tired. I am in terrible pain.
I must acknowledge my exhausted, worried, sweet, husband who is off to work this morning in spite of his spoken desire to stay here and care for me today. I couldn't do this without him.
Keep us in your thoughts and prayers friends and family. Things are tough right now.
I will also say that I am not willing to give up the occasional dinner with my amazing son, even if the cost is a big upswing in MS symptoms. I can't live with this MonSter if I can't LIVE occasionally.