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Monday, March 12, 2012

Multiple Sclerosis Equals.....

It's MS Awareness Week. It's MS Awareness Month. Rest assured that after the last few busy weeks I am very aware.

I visited the National MS Society's Web Site, The National MS Foundation's Web Site, and I think about 300 other MS related websites looking for images to post, banners, widgets etc. The MS Society had a boatload, but as well designed and great looking as they were, they just didn't fit my experience with MS.

There was not much that directly related to the outdoors; and for me the outdoors plays a huge part in living with MS. The outdoors is part of my therapy and medicine chest. It's where I live, what I do, and what makes me... ..well, me.

So taking a bit of creative license with the MS Equals campaign from the National MS Society, here's my view of what MS Equals

Living with MS can not only be a daily adventure, sometimes it's a moment by moment adventure. One never knows exactly what MS will spit out at you at any given time. MS is is sneaky that way,  wake up feeling great, and by lunch a leg is dragging;  go to sleep feeling great, wake up and be unable to get out of bed. It's unpredictable, it's insidious, and MS seems to delight in those unexpected bites in the butt and the brain. That unpredictability makes it necessary to  do a little extra planning when  heading out for a day(s) afield. I have to factor in the possibility that there may be an "issue" pop up. MS may decide to bite me in the brain.  And in my case, that bite always comes when I am the farthest from the car, carrying the heaviest pack, or smack dab in the middle of a great and fun adventure, bringing things to an abrupt halt. So, I just add in a few safety nets to my outdoor adventures, such as always taking a cell phone, using Willie the Wonderdog to carry the heavy stuff,  and not heading to the remote places alone anymore.

Thanks to the aforementioned unpredictable nature of MS I've learned to wing it - So I had full week planned, packed to the gills and the SNAP! A bite in the brain... give up the control, reschedule the meetings and get over it. Oh my - that seems so easy, but with my Waaaaay Type A personality, that's proven to be the hardest task. However, taking a lesson from the creatures in my outdoor world, I've learned to adapt. Water dries up, droughts happen, weather changes, food sources change, and I've yet to see any of my creature friends wail over the change in schedule, nary a goose has poured over it's day planner and honked "I do not have time for this cold front! "   The animals back up, punt, and motor on. I'm trying that approach this year!

MS creates soooooo, soooooo, many laughable moments, from the face plants in the mud, forgetting one's ducks and letting them freeze to the top of the car, getting lost in a 1 acre tract of woods, putting the laundry detergent in the fridge, and the milk in the laundry room; to missing appointments, scrambling up sentences and words, and often displaying an appearance that screams stumbling, bumbling drunk.. one simply has to laugh. Really - it's funny. Admit it, laugh it, craft a funny tale and get on with it. Crying and wailing sure doesn't make it any better, doesn't get the mud off your face, and won't magically transfer the detergent and milk to their appropriate homes. Might as well just laugh.... a good laugh is good medicine!

MS is a giant leap of faith, for those who have the disease, for those who love us, for those who work with us, for hose who spend time with us.
I must have faith in my physicians and therapists, in my companions, and they in turn must have faith in me. Faith that MS is a manageable disease, faith that the progression can be slowed, faith that life as I know it will not vaporize into thin air after a bite in the brain.  My family has to have faith that I will try to stay healthy and curtail some of the more risky activities. My colleagues have to have faith that I will find solutions to work related problems that can crop up when those bites in the brain occur, and my companions have to have faith that I will someday learn to ask for help when I need it and will stop being a mulish stubborn ass, and just let them lend a hand.

Most importantly, MS means lots of wondering what the future holds. Should I plan that trip for a big hunt in a remote area? Who knows what the darned MS will be doing to me in six months? Will my disease progress to the point that I am always chair or bed bound? Will I ever get my memory to work again? MS  means some adjustments in long term planning, but because of it's unpredictable nature, and the fact that affects every single person who is diagnosed in a different way, some times the best I can do is just sit and wonder and ponder. Will there be a cure in my life time? Will there be better therapies in my life time? Will I fall in the mud again today?

If you are now wondering about Multiple Sclerosis as well, please visit

The National Multiple Sclerosis Foundation 


The National MS Society

Oh and give your friends with MS an extra hug this month! They'll appreciate it!

1 comment:

  1. Gretchen, wow, I had no idea how much of an impact this has on your life on a minute-by-minute basis! You're an amazing woman the way you keep pushing forward and continue to do the things you love to do!  You're my hero!