Atypical Multiple Sclerosis

I woke up today.  I have twenty-four hours that I did not have before.  Those hours may be riddled with atypical chronic progressive MS, but these are my brand new hours. Each day I feel myself gaining strength, not physically, mentally.  My MS deteriorates my physical body more than my mental body.

For me, living every day, well really living HAPPILY, every day requires a strong mental fortitude that sees only right now.  Worrying about future events that might not even happen, lamenting what might have been expends precious energy in a disease that is all about conserving energy.

The future hasn’t happened so who knows what will be.  My energy is better used on the things, events, people here, now.  After all I am sure there will be twenty or more disease modifying drugs(dmd)  for Relapsing Remitting MS before Progressive MS even sees one FDA approved dmd.  Now don’t go yelling at me about minimizing RRMS.  I am not.  It must be very difficult to feel good one day, not the next then feel better weeks later again.  AND to not know when that dip will occur.

I mean the docs and researchers must see the highs and low of RRMS as much more important than the continual decline of Progressive MS.  I would love to wake up once, for one moment without pain, dizziness, low energy, bladder problems, etc.  I see other diseases being fought from the worst debilitation to the least.  But good ol’ National MS Society sees RRMS as an easy way to make money. OOPS!  Did I just say that. Yes, I did.

Ok, back to the moment.  I have these brand new hours and I don’t want to spend them lamenting, and complaining.  Life is too short; I want to be happy. See how easy it is to fall back into discouragement.  Alas, I am becoming happy again.  A cure can’t make me happy, a dmd can’t make me happy.  It can make anyone happy.  Happiness comes from within.  So I was dealt these cards.  I simply need to play the best hand I can.  End of the story.

Playing the best hand you can is easy to say and very hard to do.  Waking each day thankful for the new hours to spend with family, or friends, or quietly enjoying peace is my game plan.  From my window I am able to see trees, plants, birds, insects, sky, clouds, so many wonderful sights.  I love to be outside, in the woods, near a body of water, in the middle of a freshly cut lawn breathing in those smells and taking in those sights.

The things we can’t replicate like sun, breeze, flowers contain intrinsic value and these bring us most happiness.  From my living room window I see my weeping cherry tree.  The pale pink blossoms cascading down each branch was consumed with bees bustling to collect pollen- bee gold dust.  Sitting under the tree I heard the bees’ buzzing-a natural concerto- while watching the bees weigh themselves down with pollen.  Once a bee was so heavy with pollen it waffled away from the weeping cherry tree to some unknown hive.  Because of MS I was able to witness that beautiful event.  I was even able to photograph some of it.

If I didn’t have MS or if I had RRMS I would surely be working and not available in the middle of the day to witness and capture the hardworking bees.  I guess the moral of the story is to be happy where you are because all around you are things about which to be happy.  Atypical Chronic Progressive MS is the proverbial double edged sword.