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.
