Welcome

Welcome to all who visit this Blog whether you suffer from Multiple Sclerosis or have a loved one who does. Hopefully this will help all who read understand that they are not alone even though MS affects us all in very different ways. Maybe it can help open eyes of those around who do not know the unpredictability of daily life with MS.
The purpose of this blog is to offer support and inspiration. Please feel free to share any useful information that you have gathered along your journey and words of inspiration. It is hard to overcome all the obstacles we must face and it is nice to hear ways people have adapted. Inspirational stories and anectedotes are especially sought after.
If you post and suffer from Vision disabilities you are welcome to post in all capitals and no one will think that you are shouting.
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Thursday, November 11, 2010

If I only had a brain

I spent the day today doing a research assignment for my leadership class.  I find myself enjoying school work.  It makes me feel as if I am preparing to beat MS by proving that I can still use my brain.
For the research study for MS I am participating in, I have to go through a couple different cognitive exams.  An example is remember a list of words, then repeating the words periodically throughout the exam.  Another one is what we have called monotone man.  He reads a set of numbers, with in 3 seconds you have to add.  The catch is the next number he says has to be added not to the sum of the previous, but rather to the 2nd number in the previous equations.  So in essence you don't remember the sum, but the number of the equation.  It goes pretty fast, non stop for a few minutes.  After that you do the same thing but with a 2 sec interval between number.  3 seconds no problem, 2 seconds adds a little roadblock at times.  The weird thing is that I am told that I have exceptional cognitive skills, but what they don't know is I have very different cognitive skills now.
I find myself typing now with all these misspellings that never would have appeared before.  I usually catch grammatical errors very efficiently.  But now, I will post something without even noticing what I misspelled or utilizing a word out of context.  My brain doesn't process the little things like it used to.  I am hoping by having to do some intellectual thinking with school, maybe I can regain some of these skills back.
"Anyone who has never made a mistake has never tried anything new."~Albert Einstein

Wednesday, November 10, 2010

Humility

Life is funny.  Not ha-ha funny, but strange funny.  It never ceases to surprise me that when I begin to throw myself a pity party, I find myself often humbled.  There are people in this world who are suffering far worse than I can even fathom and  here I am woe is me. 
 I am lucky.  I have a good life.  A loving family.  I have a job working with good people.  I have good friends, not just any friends, but truly good people who support and care about me.  I have my faith, my Lord.  I am by no means wealthy in material possessions, but when it comes to what matters, I have enough.
MS sucks, don't get me wrong, but I am not dying.  I can't let myself become THAT  person.  I won't become that person. Life doesn't end because of this illness.  I try to remember that when I can't stand on my own two feet.  I try to remember that when I stumble.  I try to remember that when I am house-bound because I am so dizzy I can't drive.  I try to remember that when my left foot won't lift off the ground like it's supposed to or when my vision fails in my right eye.  This is not the end.  Nor is it a beginning.  This is a chapter.  A chapter of my life, a deviation in the journey. An opportunity.

I for some reason and having trouble linking, so I encourage you to copy and paste the following link.  It's a song by Norah Jones called Humble Me.

Monday, November 8, 2010

Driving Me Crazy

I drove for the first time in almost 2 months today.  It felt good to have a little more of my independence.  I have not been able to drive because I have been so dizzy.  Tomorrow I have to work, but I will have to take the bus. I can drive myself there but by the end of the day my symptoms are so much worse. 
It is very hard when you are housebound and have to rely on someone else to drive you around.  I can't imagine those that are housebound permanently.  I hope and pray that I never have this happen to me on a permanent basis. When my kids are at school, my husband at work, and I am housebound, the days are so lonely.  I hope that I am never in that place again.
All this is incentive to keep doing those daily shots.  Hoping that I am getting the true research medicine and not the placebo.  Anything to not be in that place again.
The last couple of days I have even been able to go to the stores again. My walking has improved so much, sometimes , for short distances, I can even go without my trusty sidekick, the cane.  Woo-Hoo.

The most wasted of all days is one without laughter."   ~~~E.E. Cummings

Sunday, November 7, 2010

Today

I spent the day writing  a paper for school.  It seems like such a weird thing to do in the midst of a disabling illness, going back to school I mean.  I am an RN already, but no bachelors degree.  What is the point?  Well in my convoluted way of thinking it is to secure my future.  I have come to terms with the fact that I will never be a floor nurse again, so I am in dire need of some future security.  My goal is to get my Masters degree in Health Education, so I can teach.  There are a lot of programs with online courses these days.  If I can become an instructor I will be actively involved in the nursing field still.
Anyway, back to the paper. I was able to finish writing it today.  I wish that I had this self-discipline before I became sick. I have been doing things ahead of schedule, just in case.  It's that unpredictability thing again.  I never know when or where.  Sometimes I feel like I spend my days preparing for the floor to fall out from beneath my feet.
The trouble with always trying to preserve the health of the body is that it is so difficult to do without destroying the health of the mind.  ~G.K. Chesterton