Living Today

April 23, 2010

As I recently stated I have been in a bit of a funk lately.  Living with atypical chronic progressive MS is difficult.  For so many years I maintained a positive attitude.  Not that I don’t have a positive attitude now.  I am positive that MS is a 24/7 365 day struggle.  Some would say that isn’t a happy attitude.  Ok, I’ll give you that.  But it is a realistic attitude.

Realistically, people hit emotional walls every day.  No big epiphany there.  Some say you can endure anything for a brief period of time.  I will agree with that.  Brief, is the operative word. My brief period of time is different than another.  And living with a chronic progressive disease in which no real disease modifying drug is very helpful and no cure available can be disheartening.

But, you’ll say, you just posted about how much the baclofen pump is helping.  Yes. The baclofen pump does not impede the progression of the disease; it only helps mitigate the SYMPTOMS.  And the cytoxan(used for inhibiting disease progression) is hard on the body and for me short lived.  I completed the cytoxan 1 year and three months ago.  A typical person gets three to five years before progression rears its ugly head.  Being atypical I didn’t even get two years.

See you fight and you fight and still you only move inches.  It is finding happiness in those inches or in spite of only inches  is the key.  If you can endure anything for brief periods of time ( I know I can) then I guess my key is in keeping my time to moments.  Keeping my head in the moment, being happy where I am, knowing it could be worse, and enjoying all that is around me by living today.

After all what is the alternative if not living.  Remembering those things that made me happy-family, friends, hobbies, connections to people.  These really are the enduring nourishments for a life fulfilled.  Multiple Sclerosis can leave people isolated, cut off from former lives and from the larger population.  When you can’t work, can’t lead a “normal” life, you need to work harder to connect with people.  For it is in those connections that we truly live, that we truly find happiness.

This past fall I was feeling like I was beating MS, or that the effects of MS were minimal.  So I went to a 40th birthday party for a friend.  It was a private event held in the evening with a live band and about 100 people. It began at 8pm and went long after I left.  People actually have energy and ALOT of it past 8pm.  I forgot that.  I watched people dancing at 9pm and thought, “Wow, I remember those days.”  I stood with my cement pillar legs firmly anchored to the ground watching people 10-15 years older than I dance and dance and dance.  My mind raced with the songs, choreographing the moves I would have performed had it not been for MS.

That night was the beginning of my unhappiness for I realized that night no matter how good I felt, I would never feel like I did before MS.  I know this feeling is temporary; my mind is strong and my will, stronger.  I live today, I live for today.


One Response to “Living Today”


    I’m so glad overjoyed to have read your blog’s.
    Because for me it has been a bunch of the Dr’s you described in your first years.
    I’ve actually been given a blood test result of Sjorgens disease and how it was an Atypical type of M.S. but through the help of the web I was directed to your journey . Now I have a new Neurologist who has suggested a medicine call Baclofen well so I have hope in my new Neurologist now.But he’s ordering some more test like MRIs since he WAS NOT HAPPY WITH THE 1st set of MRIs I’ve HAD since 2010 when 1st diagnosis WAS made. That is how I found my 1st Neurologist but has since then got a job with VA hospital and well THE office never answered anymore calls.
    My Husband hasn’t been as Supportive as yous. But I guess he’s in denial and will come around eventually. He hates me looking to internets for answers but thank Jehovah God I’m stubborn as can be. Your Blog has truly sparked a light that I never saw since. I have also been going downhill. Since 2010. Going back and forth for Solumedral treatments for years experiencing the High Spurts of energy to the Deep Plunges. So I really Identified with your STORY. So I again would Love to tell how grateful I am to have Found YOU LIKE AN ANSWER TO MY PRAYERS. REALLY.

    I hope to hear from you presently to see the Progression.
    I’d really APPRECIATE IT.

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