Talking MS...

I should really have this ms thing down pat by now.  I mean come on, it's been 11 years.  I used to think I was pretty good at this chronic, lifelong disease thing?  Yeah, no.  I still can't balance it all out.

What I mean is...what to share, when, how much, etc.  Writing these posts is very therapeutic, which is a great thing!  And I hope that, along the way, others have been blessed by something they've read.  I've usually got myself well grounded...but then?  Something happens and bang!  I feel disrespected or not considered, "temper temper" kicks in.  And I say things like, "this is what sucks about invisible symptoms!" and other, countless stupidities.  I instantly forget how blessed I felt during that day's "morning inventory".  How good it felt to hear my alarm, see the clock clearly, swing my legs over, feel the floor with my feet, and rise up from the bed, balanced on my own 2 legs.  And from there, being able to walk to the bathroom without slamming my arm into the door knob.  Because all those things aren't always in alignment.  Forgive me, Lord, for my ungratefulness.  And selfish attitude.

See, only I know how I'm feeling.  In my day to day life, I really don't make a habit of sharing.  I drag myself out of bed - after full inventory - I load up with coffee, and I get myself to work.  I pass my coworkers in the hall and exchange pleasantries.  "How are you, today?"..."Great!  And you?"  Because come on, I don't want to be "that" person.  You ask how they are as a formality, and end up getting a whole lot more than you bargained for?  Everybody's got stuff.  Everybody.     

I can't wear a special sign on my shirt that says, "today is a bad ms day, please be nice to me.  Please carry heavy things for me.  Please don't make me walk up or down any stairs.  Please don't stand to my left, because I see 2 of you, and 1 of you is really okay".  That's simply too much to wear on a t-shirt.  Plus, I wouldn't want the attention of kind folks being all, "omg...I am so sorry you're having a bad ms day.  I will carry your things, bring your car around, and stand to your right".  I wouldn't want anyone to do anything special for me, because I wouldn't want to put them out.  But sometimes I secretly wish people would do things for me.  But then I don't.  And then I do.  See the problem, here?  The problem is me. 

So while I don't want people to think of ms when they think of me, I seem to expect them to be Miss Cleo and have a psychic sense of my capabilities, which change by the day.  Sometimes, I wake up ready to take on the world and do it all to the glory of God!  Other days, I want to pull the covers up to my nose, close my eyes, and pretend the last 11 years were just a lengthy nightmare.

It's a hard balance, this "talking ms" deal.  Because I trust my boss, I've regretfully shared with her how I might feel on any given day.  In turn, she made certain to give me a dedicated workspace where I'd only have one small flight of stairs to travel up and down, rather than sticking me on the 3rd floor of a building clear across the campus.  And let me tell you, that felt incredibly...good:-)  Had I never told her, how could she have known?  I'd be on the 3rd floor, tripping up and falling down the stairs, exhausting myself with navigating my workplace and not having anything left in my tank to invest in actual work.  With only myself to blame.  It's a tricky balancing act.  I hope to master it someday. 

Maybe there is some validity to the t-shirt idea.  Because who doesn't enjoy reading those, right?  It wouldn't seem like I was complaining or being whiney, because it's like...hey, it's just a t-shirt!  Hmmm, it just may work:-)