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Friday, May 11, 2012

ME Awareness Day

 "Be...Together = Comfort" (c) 2012 by Shiloh Moore

When in pain and exhaustion of an indescribable magnitude
It hurts too much to talk
But the comfort of your
Company is powerful.

May 12 is International ME (Myalgic Encephalomyelitis) Awareness Day

Wednesday, May 2, 2012

'Learn To Choose Your Pain' and 'Do What Gives You Life'

'Do What Gives You Life' Scrabble letters 2012
on 'Butterfly Abstract' (c) copyright 2008 by Shiloh Moore

‘Learn to Choose Your Pain’ and ‘Do What Gives You Life’
(c) copyright 2012 by Shiloh Moore

I’d like to share with you two phrases I have developed over years of living with Chronic Illness.

First is a phrase I coined when in my teens, for those of us living with chronic illness (but obviously not totally bedridden): ‘Learn to Choose Your Pain.’

With chronic illness, Fibromyalgia and Myalgic Encephalomyelitis, you are always in pain.  You are never pain free.  To keep your spirit surviving,  it helps to prioritise what you spend your precious energy on.  Learn to Choose Your Pain. 

 'Learn To Choose Your Pain' Scrabble letters 2012
on 'Black on Abstract' (c) copyright 2008 by Shiloh Moore

I started thinking about this before I was diagnosed, when I was 14 and struggling to attend school having been unable to play my flute for months.  I came across a strange dilemma:  I had a ‘good’ day, when I had a rare glimpse of precious energy after school one day.  I found myself wondering, should I be a ‘good’ girl and do my homework, or could I spend this energy playing my beloved flute?  Is ‘I had a good day yesterday’ a valid excuse for not doing my homework yet again?! 

After many more years of illness, I learned to prioritise.  I learned that to keep your soul satisfied, sometimes you have to ‘choose your pain.’  Everything with this illness hurts, everything you do triggers a payout.  So choose what you do to cause the pain, and here comes my second phrase: ‘Do What Gives You Life.’

Sometimes it’s worth getting in trouble for not doing homework, to spend that precious energy playing.  Do what gives you life.

Sometimes it’s worth having a friend visit even though the house is a mess.  If you have to choose between either seeing the friend or cleaning, do what gives you life.

Sometimes it’s worth doing some art/seeing a friend/going to a movie or concert/going on an outing in a wheelchair/seeing nature/insert something fulfilling for you, even though you know you will have a payout as a consequence.  Sometimes it’s these highlights to life, the things to look forward to and to remember, that keep us going.  Of course, pace yourself and don’t do something if the payout will be too extreme.  But if you can, prioritise what you spend your energy on and choose to be in the inevitable pain for something that is worth it to you.  Learn to Choose Your Pain, and Do What Gives You Life.

A healthy person can learn from this too.  Within your busy schedule and list of commitments and responsibilities, learn to prioritise.  Say ‘no’ to doing too many things that are draining, nurture your soul and Do What Gives You Life.