Month: October 2014

I turned the radio on as I was driving home from Barwis yesterday and The Script song had just began.  Superheroes. This  song has made my blog in my “Tunes” strand and has never been listened to with me NOT crying.  Yesterday was no exception.  As I drove home this song couldn’t be MORE fitting for me.

At the end of the workday for me (the school day for the kids) yesterday I was speaking to a colleague about my work at Barwis.  I told her that working at Barwis for as long as I have I have learned the importance of “going to fatigue” (as Jon told me two summers ago) and how you ALWAYS have more in your tank than you thought you did.  I can push myself that far now.  This fact has been good for me in many ways.  In addition to knowing that I can push myself further than I thought I could go, I also have to persist when I realize that I can push myself no further without reaching my goal.  I have to persist when my legs are shaking and I am unable to stand to a *BINK* at the Keiser machine.  I have to persist even when I can’t get any more steps off.  I have to persist when I need someone to help transfer me from my car to my wheelchair (Matt, a new intern, helped me yesterday).  I have to persist MOST when I can’t do anything more than be still and breathe through it when Phil is stretching me.

I have been working at Barwis for just about 15 months and I am NOT walking consistently – YET.  I haven’t been fighting for  this “all my life” but I AM “struggling to make things right” (with my walking).  It is a VERY long road but I persist.  Yesterday WASN’T a “Walking Wednesday” (I’m having difficulty remembering them with clarity now) but I did 5 sets of 10 low back hypers (when Phil pushes my shoulders down AFTER I get into 1st position in ballet). Phil HATES when I do that but I HAVE to have good form!  I did these 50 hypers in quick succession.  My lower back as well as my belly burned while doing these.  That is my favorite line in that The Script song.  Because I feel that I have a beast in my belly and it IS hard to control.  I’m  not “learning how to fly” but rather how to walk and I will have persistence no matter how long it takes.

Scheduling conflict caused me to cancel Barwis today.

I remembered that on Friday I got another variation of Phil’s “bends.”  I find myself saying it to myself when I get into my car by myself.  It’s nice that I have a few variants to choose from.  They ALL make me smile and laugh.

We’ll see what Wednesday holds…

Phil came out to get me from my car at Barwis on Friday.  Mr. Curl had to come out to get me from my car in the morning  at work and then I was faced with a succession of a series of unfortunate events and then my shoe came untied.  I felt like Tanya Harding after everything went down.  I emailed Phil the link and I remember watching the Olympics when it happened.  I was frustrated and could feel my legs tightening up all day at work.

Phil could feel it in my legs as well when he stretched them out at the Keiser machine.  He started squeezing my calves and told me that he was messaging them to try to loosen them up.  I looked at him and shook my head and said, “Ow!  That hurts!”  He stopped and told me to go to the table.

He put me on the table and I laid on my back.  I kept exclaiming, “Ow!” because it hurt.  To divert my attention from the pain,I told him that Sean’s first word was, “Ow.”  I told him that a lot of people told me that that didn’t count as a word but I disagreed because he knew when to use it and with the proper inflection.  I was still walking back then but I was becoming a bit wobbly.  I bumped into a lot of things and dropped a lot of things on my feet.  I always would say, “Ow!”  So Sean knew to say it when he fell down when he was walking or when he would bump in to things.  So, it counted.

Phil told me to roll over on to my stomach.  Doing this got A LOT of “Ows.” Phil always asks me where it hurts and I can never answer because I am in so much pain.  I think it hurts most in my quads but also in my hips and lower back because my legs are used to being in the sitting position.  Whatever the reason, IT HURTS!!!  Ow!!!

Phil put me back into my chair and after 3 attempts to do it myself, he put me into my car as well.  He, “Joystick”ed me and closed my door.  As I drove home, my legs began to relax but I guess it is better late than never, right?

I was feeling alright until I got to Barwis and had difficulty transferring from my car to my wheelchair.  I texted Phil to come out and get me.  Once my time started, Phil stretched my legs at the Keiser machine.  Once I was a bit loosened up, I attempted to stand 3 times.  I stood more straight each time but was unable to stand up fully.  Phil told me to head over to the stander.  I rolled down the ramp with my hands up and let out a “Woo-Hoo!!” at the same time Eric was mimicking me.  I told him it was a BAD day if I DIDN’T do that.  Once we got over to the standers, Phil gave me a choice of which stander I was going to use.  Either the Easy Stand Evolv or the Easy Stand Evolv with Glider Option.  I chose the Easy Stand Evolv.  I told him that I was going with the OG stander (the one they had first).  Once he lifted me into the stander and was strapping my feet in, I practiced my line of, “Do your worst!” from The Count of Monte Cristo repeatedly to which Phil responded “Shut-up!” He crawled around the stander getting me strapped in answering my, “Do your worst!” with, “Shut-up!” After a while, I stopped saying anything and looked at Phil is silence but laughing with my eyes.

We were ready.  I was all strapped in and Phil began cranking the stander up.  It did NOT hurt!!!  He put his hand between my shoulder blades and reminded me to squeeze his fingers and keep my shoulders back.  I did with ease.  I told him that I could stand for days!   Because I could.  After 3 minutes he uncranked the machine to which I was disappointed because I had much more in me.  He let me rest and came around to my other side and sat in my wheelchair.  He put his fist out that I bumped and then grabbed his fist, shook it, and yelled, “Joystick!”  Ha-ha!  Got him! (or he LET me get him).  My 2nd time standing, I stood for 5 minutes!  I looked at Phil and exclaimed, “Shut-up!  That was 5 minutes?!”   Eric cranked me up the 3rd time.  This time I grunted and gasped.  I stood for 6 minutes this time.

We went back to the Keiser machine and attempted to stand twice more and didn’t stand fully.  I have clocked a total of 52 minutes in the stander so far.  On my drive home my butt started to hurt and that felt good.  This morning, it was a trifecta of pain: my butt, quads, and hamstrings are KILLING me but it hurts SO good!!!

Yesterday was an “off” day for me.  I knew I wasn’t going to be very productive at Barwis.  The “off”ness of the day kept compiling and it was a bit discouraging.  When I got to Barwis, things were what I expected them to be.  Phil stretched me at the plyo boxes and my legs were EXTREMELY tight!!!  My left leg kept “boing”ing up and refused to straighten out.  Phil kept telling me to, “Relax.”  I was trying but my body (my legs specifically) wasn’t having ANY of it!

The refusal of my body to comply is frustrating and disheartening.  I am frustrated because I used to be able to control my body – ALL aspects of it!  I am beginning to see that I am slowly losing control of more and more things having to do with my own body as a result of having MS for these last 13 almost 14 years.  I can no longer WILL my legs to relax and straighten out.  That fact is disheartening as well.  Sure, I CAN get mad (AND I DO!!!) but is its essence, it just sad.

It’s sad that I can’t control my own body.  It’s sad that I am at the mercy of things out of my control, like the weather.  Phil told me that EVERYday I come to Barwis, that it’s productive.  It’s difficult to see in this instance though.  Twice when I was seeing Parker, there was an instance when he stretched me that my body felt normal for a second until I moved.  I felt that way once with Jesse and once so far with Phil.  My time was up and Phil asked me, “Sh** feel better?”  And I slowly shook my head in answer but added, “It will on my way home.”  It DID feel better and I fell asleep easily but was awakened at 3 am to the sound of rain and pain in my body.

When Phil put me into my car, he “joystick”ed me and closed my door.  It’s cool that amid my frustration and sadness, he still can make me smile.  I was halfway home before my legs started to relax.