Wednesday, April 21, 2010

Update: the Good, Bad, & Ugly

I am typing one handed and with my non-dominant hand. It isn't an experiment in being a lefty, but the result of spraining my right elbow in a truly scary tumble from my chair to the sidewalk on Sunday afternoon. I was rolling down the street and with my poor peripheral vision, managed to abruptly drive off the sidewalk, have my front wheel drop into a hole and the jarring impact tossed me out of my chair.
The bad is that  I was holding a 9-month old baby when I fell and the good is that she wasn't harmed. Her mom complimented me on falling so protectively. I think that an angel was protecting that little girl, through me. I would gladly have broken any of my bones rather than have anything happen to her. Another good is that while I am achy, bruised, and twisted, for the most part my injuries are quite minor.
Ugly is wading through the frustration and anger of another setback. My MS symptoms are predominantly left sided and I rely on my right side to maintain some semblance of normal.  My right arm is how I drive my chair, transfer, sit up, eat, and on and on. Now, after two days of forcing my left arm to do more, it is becoming weaker and the joints are hurting. Exactly how am I supposed to be armless?
I have bruises on my leg, ankle, butt, and elbow. And, my confidence in being in the world. Already my 'alone' world was reduced to walks around the neighborhood and my house. Now, I have to face that even in walks within a few block radius I can fall and be hurt and stranded. I had a friend with me this time, how could I dare to go out alone? 

Sunday, April 11, 2010

Wanted: Magic Bullet

For the past 10 days I have focused on Friday's nerve injection as the answer. If not a cure for MS, at least a 'sure thing' to ratcheting back the pain and improving every corner of my life. As if, I would come home from the doctor, dance a pirouette, find my kitchen remodeled, and my own personal rainbow decorating the backyard. What I let slide into the dark corners of my mind is that I have an incurable, pain in the neck illness that has the habit of flooding every area of my life.
I made the mistake of starting to think that 'normal' would return instantly and that that 'normal' was something other than life with progressive MS. Instead, it is Sunday morning and I am struggling mightily with head pain, fatigue, and the disappointment of only incremental improvement. As I have cancelled one plan after another all through Saturday and into today, I am having to face that Friday morning was a bandage and not access to an elixir.
Yesterday morning, I did too much. On a sunny Saturday morning, one might read that and think I woke up, made pancakes with bacon, spent a couple hours in the garden, worked out, then did weekly chores as well as some Spring cleaning. In reality, doing too much meant rolling around the neighborhood for 10  minutes while my hubbie walked the dog, then coming home and writing a Thank You card. By 1pm I fell into bed and slept like a dead thing. Then my dad came by, trounced me at cards and left after about two hours. I laid on the couch for the rest of the evening and was in bed by 8pm. I had hoped to go to church for the first time in a month this morning, but by 8:30am knew that wasn't to be. It is 12:30 and I can't seem to work up the energy to get out of bed. My head still hurts, although maybe a little better, and I feel like a rung out dish rag.
Maybe one of the hardest things is responding to the hope I hear in people's voices when they ask how I am. I feel like I am disappointing them when I can't give a better report. Even though I realize that the question comes from deep care and concern as well as the hope we all have that something, anything will help. I am only reminded that once again, this illness rather than my desires control what I am able to do. No amount of rest, or planning, or any 'magic bullet' can make me able to do something, no matter how much I may want to. 
A little earlier, my hubbie brought home a bouquet of purple alstromeria and mums from the store. He is putting them in a vase that a dear friend gave me for my birthday. I am listening to soothing music. My dog is curled up next to me. This will have to be enough. Cataloging these many simple blessings becomes my own rosary. A prayer of thanksgiving for life.  

Monday, April 5, 2010

Sound, Light & the Fury

Occipital Neuralgia sounds like some tropical disease that early explorers would catch from a rare parasite at the headwaters of the Nile. Actually, in my head it is many things: pulsing stabbing burning pain that spreads neatly along the right side of my head from my neck to my forehead and down to almost my ear; random stabbing pains in my right eye; and, in many ways, the worst is, sound and light sensitivity.
Sensitivity seems like such a namby pamby word. Although, when I check out the meaning, maybe it is a better descriptor than I first thought:

sensitive • adjective 1 quick to detect, respond to, or be affected by slight changes, signals, or influences. 2 delicately appreciating the feelings of others. 3 easily offended or upset. 4 kept secret or with restrictions on disclosure.

 1 Today a giant snare drum player has crouched over my home and loudly played intense unrelentingly beats on my roof—what everyone else calls simple spring rain. I have heard and counted every drop. The sound scratches and nibbles at the corners of my mind and nothing makes it go away. Last evening my husband dared to turn on the dining room light. I began to go insane. It is as if someone has taped my eyes open and I can't escape the penetrating persistence of it. When he shut it off, it was like diving into cool water on a hot day, the relief was total and instantaneous.

2 Delicate appreciation of others—bah humbug. Since I can't be nice I stay hidden in my cave and growl at the bridge crossers. Talking on the phone is hard, TV commercials are dentist drills, and crowds feel like my brain is in a blender.

3 After 24 years, I am still not brave enough, or is it foolish enough, to ask my hubbie if I am easily upset and offended right now. It is a fact. I am sure that if I am finding the world at large and interacting with people in general akin to running a cheese grater over my brain, I am definitely a witch at least two or three times a day. Nuff said.

3  If I could only weave a hat that others would slip on to experience this sensitivity. By its very invisibility, it becomes a secret. Certain sounds and lights can simply overwhelm me to the point that I can't think, or understand, or be rational.

And so, another day is drawing to a close. I have survived inspite of this maddening sensitivity. Sleep is a welcome respite. And, since I am a tough cookie, I will make it through tomorrow too.