Thursday, January 28, 2010


Probably, the hardest thing to explain to folks is the toll I pay for doing the most normal things. The extra-ordinary events come at an even higher cost. No amount of prepping, organizing, assistance, self management, meditation, or other techniques will mitigate that choosing to participate will cause me to spend time in the penalty box. It is four days after my coast trip and I still feel like I was hit by a truck. I've been in bed for most of that time, my hubbie says I have dark circles under my eyes, and my arms, hands, and left leg are driving me batty.
So, what do I do? Become like the troll under the bridge and be defined by the MonSter rather than the brave creature who dared to cross the chasm no matter the outcome? 
This past Saturday,watching the winter grey waves reflecting the unexpected gift of sunlight, spending time with friends, and reading a fantastic book; my answer to the do or not do question was easy. By Sunday night, say around 2am with my arm pain keeping me awake,I was questioning the sanity of doing such an ordinary thing. 
My bags from the weekend remain packed. The mountain of laundry is growing. And, my body shows no sign of improving. How can something as simple as a weekend trip make me pay and pay.
It isn't as simple as, OK, I shouldn't go, so don't even ask me. I want, more than I can express, to be a 'normal' almost 45-year old woman who works, gardens, cooks, takes the occasional trip and the countless other things that I should be able to do without weighing whether my body will go into an MS death spiral. See the Amazing Janine as she attempts to live while balancing precariously over the precipice of MS.
All I know for sure is that for today, I will take the best care of my self that I can and savor the memories of this past weekend. And, leave the future to sort itself out. 
I am aware, always, of God in my life. With Him daily survival is a soul thing. He is the constant in my lowest times, contented times, and when I am at my best. I read this Psalm and am reminded of this.

A Pilgrim Song

 1God, I'm not trying to rule the roost, I don't want to be king of the mountain.
   I haven't meddled where I have no business
      or fantasized grandiose plans.

 2 I've kept my feet on the ground,
      I've cultivated a quiet heart.
   Like a baby content in its mother's arms,
      my soul is a baby content.

 3 Wait, Israel, for God. Wait with hope.
      Hope now; hope always!

Psalm 131


Stuff could always be worse said...

Love your cartoon....Yes I know you pay for play, but I believe it is worth it. Hope you get better and you do write so well again.

Peace Be With You said...

I wish for you to have a speedy recovery and to regain as much of your normal life as MS allows you. Your post today made me think of a poem I posted on my blog about a week ago:

Sometimes I just want
to be an ordinary
person sans MS.

With ordinary
possibilities to live
a regular life.

Sure, yeah, I get it.
This is what’s up for me now.
Can’t help wishing though.

Take care,

Anonymous said...

Janine - I love what you shared. I had a grand mal seizure on Wed night - this time falling and hitting the piano with my head which caused Mike to need to call 911. It's frustrating and humbling and hard knowing I scared my children (who all saw it and have never seen one before) and requires a tremendous amount of faith to try and let go of some things so that I don't push so hard and have more problems. That won't help anyone. Acceptance is a hard thing - and I know you know this well. Keep blogging... You'll be surprised how many of us who can in theory run around the block can relate to what you say and feel. Even if that isn't fair! Love, Laurel

Rick and Mary said...

Hello sweet one - so glad you write. So sorry you pay so dearly for what most can take for granted.
Thanks for helping us understand a little.