Monday, November 12, 2012

Stuck in "Park"

Life has been so much better for me since Ampyra entered it over 2 years ago.  There are downsides - I get leg spasms that are worse, and which are a message for me to walk.  But seemingly nothing really has gone physically wrong - I didn't get any sicknesses that other people would get - I didn't get any of Lori's sicknesses.  I have had milk and dairy cravings.  But I was to the point that I thought I might be immune to everything. 

But then other chaos from the world finally caught up with me, grabbed me, and I was caught.  The chaos forced my body to find the limit - the limit not even Ampyra could conquer.  The crud hit me, fast and furious.

It hit on a day I had gone to help some physical therapy (PT) students.  There were 2 sessions - one in the morning and one in the afternoon.  In the morning I was fine - to others I might have not looked good at all, but I have come a long way.  In the afternoon, I suddenly thought the room was hot.  I was with a different group of PT students and it seemed nothing was working and my fingers and feet were numb (usually this means the room is too hot for me).  By the time I went back to my van, I could barely get in.  And by the time I picked up my daughter and was handed the pen to sign her out of the after-school program, the realization hit me that I couldn't grip the pen and couldn't write.  We went home and I couldn't get myself on our lift (I walk onto the lift, but I couldn't lift my foot).  My daughter brought a wheelchair behind me and I sat, and she pushed me onto the lift.  In a matter of hours, a mild fever rendered me completely useless.  That is MS - the surprises come from seemingly nowhere and are never fun.  Scary?  Well, not with a fever - it's more of a feeling of breaking things into steps, but the steps are so small - get inside, find the Tylenol - getting Tylenol, as silly as it may seem, is like winning a big trophy.

Immediately, I started taking Tylenol.  That evening and night never seemed to end, with my body alternating between hot and cold, no feeling in my hands, legs, or feet.  The next morning I did try to get up.  I had put my wheelchair right next to the bed (usually it's in a different room), and I made it there.  To get the Tylenol, I had to go to the floor and drag myself to it.  I didn't wake up Dave because I guess I am just that stubborn and I could handle this.  I took the day off of work - I don't do that (I don't really get sick), and I just sat, taking Tylenol every 4 hours.

Next I got a huge cold.  I went to work for 2 days, came home, and collapsed.  I was very sick.  On one of those days I went to a couch in our sunroom and put my legs up.  I couldn't stop coughing (a dry cough) and had to do a series of relaxation strategies to stop.  I fell asleep.  When I woke up I didn't want to move.  An hour later I sat up. God, really, is this ever going to end?  And then, would my legs feel better?

There were strange feelings in my legs through all of this.  I recall wondering what my usual self feels like.  Ampyra was still flowing, but I wasn't walking.  I had the strange sensation that I suppose would be like if a person got in their car, kept the car in "Park," and then pushed halfway on the gas pedal and kept it going.  The car wants to go, but it's in "Park."  Nothing can take it out of "Park."  What a waste.  The person would sit there in the car, knowing it was a complete waste, but still keeping that gas pedal down, going nowhere, wondering if at some point, they could get out of "Park" and go somewhere.

Almost as quickly as I was hit by this thing, I recovered.  On Friday, I decided to take a sick day because I didn't feel I was pulling through.  I felt like I was starting each day at 50% and finishing each day like the car in Park with the gas going.  So Friday, I rested.  I couldn't sleep much, but I could move a bit.  On Friday, I stood straight for the first time and it felt so good, like I was still in Park but I took off the gas pedal.  By Friday night I was walking some and on Saturday morning, I stood up and felt like I could move.  By Monday, I was back at work, not quite doing what I had, but close.  The car was out of Park.  If I pushed too much, I would feel hot again, which was strange.

Sometimes I don't know why I decide to write about various things, and this would be one of those times.  Perhaps it's so I can try to explain how things can be different for someone like me - if I'm a little sick, it might be different than for someone else.  A little fever below 100 degrees results in nothing working.  At the same time, I can "pop" back, and I think Ampyra helps with that.

In the next week, I was back to working on standing straight, making my legs go straighter when I walk, etc.

Faith is only a small part of this.  I remember sitting on the couch and thinking, God, you have got to be kidding me.  When going through motions of survival with MS and another sickness, it's a thought process of "I need to be there," "I need to move my legs there," "I need Tylenol." And then "thank you, God" or "you have got to be kidding me God," or "God, am I going to make it through this?"

There were no answers from God.  But faith doesn't always need answers.  Faith is sometimes, in the middle of chaos, where we can find


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