Wednesday, November 6, 2013

Peaking Behind the Curtain

It is the oddest misdirection, slight of hand in the world of MS. One I have blithely practiced selective-blindness of for the past 13 years. That behind the various parts of me slowly, inexorably being lost—the wheelchair, the ostomy, the career loss, the nerve pain; the seemingly endless list of losses is one thing that I seem to have pushed aside. That the MS world keeps wrapped in a greasy cardboard box and sticks in the back of the janitor's closet. MS is a disease of the brain and all these years while my body was falling apart, so to was my brain.
Earlier this year I had my first series of seizures in the hospital. Not the stick something in my mouth, writhe on the floor, stuff of movies. But more where my body locks down, becomes rigid. Sometimes I can hear, often I appear to be sleeping, but internally my electrical systems are jangling on full overload. Lasts for an eternity but is really from five to 24 minutes. I come to lost, shaken, disoriented. The revered hospital neurologist declared it was either long-term sleep deprivation or whispered that it might be undisclosed trauma (the go to diagnosis of neurologists everywhere). She made no mention of seizures and MS. She did put me on a sleep med that scared me near to death and failed to mention that at higher doses is a powerful anti-psychotic. The medicine was a nightmare. Eventually I stopped taking it. Feeling better from that and hoping the seizures were related to being in the hospital or the exacerbation/infection I chose to put them back in the greasy box in the back of the closet. Given their silent nature and infrequency, it wasn't hard to do. At first.
With increasing frequency over the past two months the seizures are now front and center in mine and everyone's life who cares for me. I have days where hours go by and I can't fully rouse from the cycle. My brain feels like a layer of wet insulation is laying on it and electricity is coursing through it. Equally frightening is my speech has started to be affected. Often when I come out of an episode I can either not speak or the words come out in gibberish. What is so unearthly odd is that I can still write notes and think clearly. Even during non-seizure time chronic 'word finding' and saying nonsense phrases happens. It scares the people around me. Mid conversation I suddenly slip into talking in gibberish or rambling about something that doesn't make sense. The other morning I had an impassioned conversation with my husband, right in the middle of a normal one, about how tired we were after driving to Bend (a city two hours East of here) during the night. Later he questioned me about it and I had no memory of what I had said.
I am trying to research what is happening. As I understand it, it is pretty grim. The deterioration in my brain is getting into the connective tissue that the electric current flows through to keep me up and running. This is late stage MS. My Neuro says little else can be done. So now what? Do I find some way to live with dignity while my brain deterioration starts to be visible? Do I want to? Is there some way to fight this? I just don't know. I am terribly afraid.

Friday, October 11, 2013

Fear in Every Day Life

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.