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.

Tuesday, October 8, 2013

First Step Name and Know Your Fear

I tried to find just the right gargoyle to give my fear a quantifiable face. This one was too cartoony and that one was too daemonic. Then I tried clip art images of fear, but they seemed staged and simplistic. Names for my fear all fell flat. This wasn't something I could have tea with or arm wrestle out the door. Then I tried on some of the truths, pack it in a suitcase and leave it at the door, or get to the feeling behind the fear, or drag the fear into the light, face it, and be victorious over it. Nothing worked. Fear seems to hover and slither over me like a shadowy beast. 
What is this fear and why doesn't it leave me alone? Finally, I have come to realize the difference. This isn't fear based in the echo of childhood trauma. Or fear of an unknown future. Or fear of noises in the dark. This is fear based in reality: in choking, in brain fog, in feeling the threads bursting at the seams. MS is affecting the core of my being and I am afraid.
Several times a day I have these 'fugue' states that are part of Paroxysmal Syndrome. An MS cluster of symptoms that includes non-epileptic seizures, stabbing nerve pain, deep spasms, choking, and loss of temperature control. These fugue states can range from a few moments of sleepiness to up to 20 minutes of unresponsiveness where I am locked in my body, can hear but can't move. I come to shaken and disoriented. The fear is: what if I don't come out of it; what if I stay locked in my body forever.
The choking is part of the Laryngeal Spasm, but increased. Now if I take too large of a bite or chew too long the food builds up and seems to catch on the back of my tongue and I can't swallow. Also, when I lay in certain positions or turn my head too far to the right, my larnyx closes off and the choking starts. The fear is: this clot of food is cutting off my throat, I can't breath, I can't swallow, help me, help me.
My brain feels like a metal band is encircling it and slowly tightening around it. I have spasticity in my neck that can force my head down and back by about two inches. The nerve pain in my extremities is insane. And so are the charlie horses and spasticity. The fear is: how much worse can this get and can I and will I survive whatever is next