Wednesday, June 4, 2014

The Power of Adapting

A year ago I was returning from Cleveland Clinic where I had the lovely opportunity of stumping their specialists.  Their answer to my predicament: go back to rehab.

Within a day or two I was admitted to one of the rehab centers here in Pittsburgh, the same one where I had spent weeks the summer before. 

No one knew what to do.  Nothing was working, I was getting worse, and I literally thought I was dying.  

Fast-forward a year: I'm walking, without a crutch, cycling- on the rails, talking - just like normal. 

(Part of my tsl bike adventure today)

And while I am typing this basically blind (hell yeah optic neuritis), I cant help but think how thankful I am for where I am now.  Of the hard work that has paid off in the past year.  

And I mean hard work.  I couldve given up so many times.  I couldve just accepted my position and let it define my life.

But instead I took the situation and I adapted to the best that I can.

There's that common saying "I have MS but it doesnt have me".  It's a power statement agreed but I kind of dont buy into it (dont judge).  Because the truth is, MS totally has me.  And until there is a cure (#findacurealready), it will continue having me. 

Which is why instead of fighting ms, I'm adapting.  Im realizing my limitations and adjusting as such.  Im becoming more efficient and effective (hello MBA lessons) in my daily life so to preserve energy.  Im determining what is important and what comes second (ie less make-up, more friend time).  I'm taking the time to stretch it out, to watch my diet, to not just pop the pills but listen to my body.  

And it's working.

Well, sort of.  

(Ps: even my surgery neck scar is looking good. Love it.)

Let's be honest, I'm not symptom free.  And we havent actually found a way to slow down my progression.  Lesions keep popping up.  

It is so frustrating to me to "look so good" and being doing so well with my walking because to others, that means I'm great, I must not be sick anymore.

And while these are positive things, I cant see.  My sight is at about 70%.  I have a dead right arm - shooting pains from the shoulders down and no sensation from my fingers to elbows.  I'm relearning how to use it.  My feet have a reflex response of 0.  At night I lay in bed, my legs shaking with ataxia.  If someone/something touches me while Im walking, I will fall.  Fatigue is my unwanted best friend.  And the list goes on and on.

So if I've learned anything about this MS journey (and granted it's only been a little over two years...TWO YEARS!!), it's that I'll get better.  And then new symptoms will come on.  Remissions is not exactly a word I strive for because I have no guarantee of it.  

What I do have a guarantee of is happiness and peace.  Because those are two things that by my adaptions I can bring in to my life.  And through happiness and peace (and for goodness sake, sparkle how could I forget), I will learn to adapt with these new symptoms.  And I will continue kicking butt.  And I will keep creating awareness for a cure to the disease that is trying to rob me of my life. 

Moral of the story, MS might "have" you.  And that's ok.  I even say cry over it.  But then grab a kleenex and learn what you can do with your MS.  You'll be surprised that while you may be limited, you can still do more normal things.


PS: For some examples on how I've adapted:

Cycling: with my gait and balance off, as well as with my cervical spine surgery, my ability to ride a normal bike is so far gone.  But guess what?  They make these fabulous recumbent tricycles.  Welcome back trail riding!

Showering: showering is the worst...legit.  The hot water drowns your body, the cold water makes you shiver.  I basically need a nap after each shower.  Plus it takes my hair 5 hours to dry.  So, I make sure to use organic deoderant daily and do a washcloth bath every evening.  It limits the showers I have to take. 

Insomnia: insomnia is like the evil best friend of fatigue.  You are tired all day then FULL awake all night.  So I've stopped taking naps during the day.  Use my bed for only sleeping (I read and work on my computer elsewhere).  I take some melatonin.  I do some yoga and meditation before bed.  I make it so easy for my body to fall asleep it just is tricked.

 (My friend Mary, friends for 15 years, at the Luke Bryan concert)

Activities: This past weekend I went to a Luke Bryan concert (gosh darn is he a sexy man) as well as a wine and food festival.  Both a blast.  Both a total body killer if not done right.  I made sure to stay in bed as long as possible, preserving energy.  I wore loose fitting clothes so as not to overheat.  I drank my water and ate good for you food.  I sat down when I could.  I utilized my disability parking pass so I wouldnt have to walk further.  I did breathing exercises if I became over stimulated.  


You will find your groove.  You just have to work at it.  It's different for every person (be weary of people who have the all inclusive answer for we are not an all inclusive group or disease).  Listen to your body.  Learn what hurts and what doesnt.  

And then, adapt.  <3