Thursday, August 22, 2013

Sparkle On

Guest Blogger...Captain Team Sparkle...aka my Mom.  Love.

I've learned over the past few months that one of the hardest things about MS is its unpredictability.  Even when a MS sufferer is in remission they can have a good day followed by a day where they truly cannot get out of bed. (As one MS sufferer calls it, a pajama day! More about that later.) It is hard for people who aren't intimately involved with someone with MS to understand this. A person with MS can't plan vacations, dates, or appointments with any confidence that they will happen.  They don't know from day to day when a "pajama day" will happen.  

Unfortunately, friends and acquaintances don't always understand the unpredictability of MS and take offense when lunch dates are cancelled, phone calls aren't answered, emails aren't returned.  They feel inconvenienced when plans suddenly change.  What they don’t see is what the MS sufferer is experiencing which might include extreme fatigue, tremors, spasticity, dizziness, cognitive dysfunction, headaches, and a multitude of other symptoms.  They might be lying in bed with the curtains drawn, using all the energy they have just to get something to eat or go to the bathroom.   Talk about inconvenience!

Elizabeth recently had long time friends who wouldn’t talk to her for weeks because she had to cancel an appointment. The day that Elizabeth cancelled the appointment she spent the entire day in bed because of an excruciating headache.   It was not a good day.  In fact it was a very bad day.  Imagine the stress that Elizabeth had to deal with as she repeatedly apologized and was never really “forgiven”.

Imagine a world in which you worry about every birthday, anniversary, wedding, baptism, appointment, or vacation.  Will you be able to attend?  Will you have a relapse?  Will you simply have a “pajama day”?  And you have to worry about other people’s reactions.  How often has a MS sufferer heard, “But you were fine yesterday!”  Or, “How can you be too tired to meet with me?”

Why am I the guest writer today?  Because Elizabeth is having an extreme “pajama day”.  She was able to walk all the way down the aisle at her sister’s wedding.  She was able to give the Maid of Honor toast.  She was able to attend the day after “wedding brunch”.  She was able to go to a doctor’s appointment by herself.  She was able to go to Starbucks and address many MS Bike postcards.  And then it hit.  An extreme pajama day.  Actually, several extreme pajama days.  And we are praying that it isn’t weeks and months of pajama days.  But, once again, that is the trouble with MS: its unpredictability. 

BTW, why pajama day?  I don’t know where I first read it, but one MS sparkler posted that she does not call any day a bad day.  Every day is a gift and she will not label any of the days as a bad day.  And so she coined the term pajama day.  This leads to one more thing that I have learned about MS.  MS sparklers are truly inspirational and show the rest of us how to live. 

Sparkle on, Elizabeth.