Jun 2, 2014

Even I have to admit some days it's harder to find the joy than others...

I am still impatiently waiting for the results of my testing for Wilson's Disease, my Doctors office assures me they will let me know either way.

I also now have a week under my belt on the Parkinson's med's.  Well the first round of minimal dosing.  I'm struggling with remembering to take them (I don't even take a Tylenol) and I have reminders set on my phone etc... but I have to say I've missed a couple.  I think I have a new system a bit better sorted to try and fix that from happening.  Increases are suppose to gradually happen every week for about 7 weeks before I'm on the proper amount to see if it works.  I hate pills. 

As the title reads it is sometimes harder to find the joy.  For instance this past Friday was a great day.  I felt great, my tremors were at a minimal, I had gotten some sleep, heck I even pulled off a 14k bike ride Friday morning followed by some outdoor fun with the family.  And then the weekend hit.  The days where I am thrown a curve ball and reminded just how bad the bad days can be.  I started my Saturday by attempting a short jog which I've done many times only to end up frustrated and annoyed because my body was just not cooperating.  I was a mess, shaking like a crazy person both arm and leg and just could not get out of my own way.  Both my girls had their big dance recital that afternoon and I struggled greatly trying to pull off hair and makeup.  Particularly the fine art of mastering a bun in my very curly big girls hair.  I pulled it off though and they were both ready.  Sadly by the time they were both ready Mom was done.  It was everything in me to get enough get up and go to get out the door.  I showed up at the dance recital wearing capri jeans, a tank top and flip flops.  NOW if you know me you know I do not go to an event without a pair of heels.  I LOVE my heels.  So for me to show up among all those people all dressed nicely to enjoy their children and grandchildren's performances flat footed meant I was definitely having an off day.  In fact my leg was shaking so badly that I didn't think I could pull off heels.  The girls took the stage for their performances and all my pain, shaking and troubles melted away watching them as proud Momma beamed.  Then it was home where sadly their Dad took them off geocaching on the trail near our house while I headed to bed for a couple hours when I would have much preferred to tag along with them on such a beautiful day, I simply could not.

Sunday hit and not much had changed, in fact my tremor was even worse.  Normally I can hold onto something with some weight and the tremor will stop as my muscles are engaged, not so much this day.  By the end of the day it would shake sitting on a table.  I spent most of the weekend when in public with muscles flexed, hand in pocket or even sometimes sitting on my had to try and control it for others eyes.  Why?  I don't really know.  It's not like it's a secret.  It's physically exhausting to have all your muscles tense for hours on end and by the time Sunday evening came my body was nearly done in.  Completely and utterly exhausted and I enjoyed the quietness of home where I could just let it twitch and move and do it's thing without worrying about hiding it. 

Now Monday has hit, I did get some sleep (another rare thing in my life lately).  So this morning I sported my runners again to attempt that run, it was better than the other day no doubt but it was way more walking than running.  My body is simply still recovering from two wickedly bad days.  Maybe tomorrow it will catch back up and get back to normal.  Ha!  Normal, what's that?  Maybe I should say it'll get back to being 'on'.  A good body day, a day where my body hates me a little less.

So on those bad days I simply remember the joy I found on the good ones, like that long bike ride and the fun outdoor family fun.  Focus on those moments knowing that it may be a bad day where I have limited ability to do certain things with ease that another good day is around the bend.  Because lets face it, they can't all be bad.  Life is still good, it could always be worse!

My girlies sure do make me joyful!'

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