Thursday, January 17, 2013

Courage to Leave the Room

Fibromyalgia and Chronic Fatigue Syndrome are energy drainers.  People who have FM and CFS do not have bodies that produce energy as quickly those who have healthy bodies.  Therefore, even when you are feeling good, you have to remember to pace yourself.  Listen to your body when it starts telling you you have had enough of an activity.  If you have been sick for very long, you usually sense when it is time to stop whatever you are doing.

However, I know it is often hard to just stop.  If you are in the middle of an activity, you want to finish -- at least, I do.  Therefore, consider yourself in the midst of retraining, which will take as much persistence as the goal to complete a task.  A good example of this is my return to choir rehearsal, which is something I want to do, but I often am  without the energy to be a regular member of the choir.  I am blessed to have developed good musical skills over the years, so our minister of music is happy when I can be there.  However, when I am there I often give out before the end of choir rehearsal -- even if I was careful during the day to save energy for it.

So what do you and I do if we give out during our activities?  In my case, my outside activities are volunteer, and the other participants "know" I am ill.  Supposedly, that should make it easier for me to do what I need to do to be able to do, which is rest;  however, my pride gets in the way.  It is embarrassing to get up and walk out of the room before the last song is sung.

Last night, I arrived at choir rehearsal early, which eliminated the stress of feeling rushed.  I was able to leisurely get my music and my rehearsal format, then find a seat.  I enjoyed chatting with other choir members as they walked into the room.  --so far, I was alright--  I  listened to the devotional and sang through the first few songs.  Then, I felt it:  panic attack or chronic fatigue.  Which was it?  Usually, I know;  however, it was mild;  so, I stopped singing and tried to relax.  I felt like I needed to leave the room and go home.  But, I was getting closer to the end of the hour long rehearsal, so I stayed, which was a mistake.

My body was telling me, "Rest, Deborah."  And like so many other times in my life, I didn't have the courage to leave.  I was too worried about what other people would think.  Moreover, I like to finish what I started, but I cannot always do that in the allotted time.
Image Courtesy of [Sattva] /

For those who have read Got All My Marbles?, you are familiar with counting marbles for the activities, that you do during the day.  When I do remember to move my marbles from one bowl to another, it is an easy way to pace myself.  It is a visible reminder, I need to slow down or suffer the consequences, which could be anything from disturbed sleep to having a flare-up.  I thought it might be enlightening to count my marbles in what I thought was a not too heavy day.  

1.  Make brunch  2.  Check email  3.  Read friend's blog, comment  4.  Check social media  5.  Respond to comment on my blog  6.  Write blog post  7.  Send blog post to various social media  8. Shower, Dress  9. Put on makeup, Blow hair dry, style   10.  Scrape out peanut butter jar and eat, fix ice water and waffle, eat on way to rehearsal  11. Hunt for umbrella, secure house, walk to rehearsal in drizzle  12.  Choir Rehearsal  13.  Walk home
14.  Scrub and cook potato in microwave, cut leftover roast, get out vegetables, heat my  meat and vegetables, fix bake potato -- finally sit down and eat supper.  15.  After an hour or so break, wash dishes by hand, wipe off counter, and shine sink.     

Image Courtesy of [Maggie Smith] /
It's obvious I went over 12 marbles, and as you know from your own daily lives that does not count the incidentals during the day.  Some things, don't seem to take as much energy, but I think you would be surprised how much thinking and emotion figure into the equation.  That's probably no eye-opener for you, but I think many of our healthy friends and family don't understand how all these things add up to affect us even into the next day;  nor, do I  think our healthy doctors understand how we feel.    

So I didn't walk out of the choir room when my body was telling me go home.  After last night, I think that is going to change.  My choir director, who is also my husband says do what I need to do.  He knows my work at home is affected by everything from overdoing to weather.  

The point is you and I are the ones responsible for doing what we need to do, so that we do not throw ourselves into a bad day or a flare-up.  Even then, when we are pacing ourselves, there are often outside factors that affect our energy that we have no control over.  I encourage you to plan ways that you can rest or back off when you need to.  If you are able to go to the zoo, find a bench or a table in the shade to rest.  Don't be afraid to tell your family that you need to go back to the car to close your eyes.  Sit down on a bench in the grocery store or use an electric cart on those days you are extra fatigued.  Forget about embarrassment.  It is not other people's jobs to judge what we need to keep our bodies functioning.  However, it is our privilege and responsibility to exercise self control and make good decisions.  This will help to make you a better family member, neighbor and friend.  It will give you more energy to use in serving others.  To lead more satisfying lives, FM/CFS patients need to incorporate the techniques that help us pace ourselves in a realistic way.

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It's always lovely hearing from you. xoxo, Deborah