...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Lost Opportunities? – Just Postponed

8/21/2012

2 Comments

 
Picture
© 2012 TSM
We spent last weekend with my niece and her young family at the lake.  My great niece is seven months old and looks so much like my daughter did at that age – the bright smile and the big cheeks - and she has the same easy going, sweet personality.  The difference is that I can hold this new baby.  I can play with her, feed her and even dance with her.  When my daughter was the same age, I was in the depths of ME/CFS and couldn’t hold a glass of water let alone a fifteen pound baby.  I missed my daughters’ time as a baby and toddler.  Even when she was three, I was still unable to pick her up or do active play with her.

Did I miss out on an experience that I can never get back?  One could look at it that way.  And of course, I can’t get it back with my daughter.  But spending time with my great niece was such a wonderful gift.  It was like recovering that lost experience.  And my daughter was there too.  She just turned nineteen.  It was a joy to see her holding her cousin on her hip and playing with her.

If I had tried to ‘do it all’ with my daughter, I know that I would still be struggling with ME/CFS.  ME/CFS had such a profound hold on me that it took dedicated focus, to the exclusion of all else, to get well - even the joys of my daughters’ babyhood.  I did find ways to enjoy her and be her Mom but they needed to be energetically limited.  And I would do it the same again because now, and for the last twelve years, I’ve been a full participant in my life, her life and the lives of all my loved ones.  So now I plan to see my great niece as much as possible
and revel in this new opportunity to recover something that was just postponed.

Are you balancing choices that might be missed opportunities?  Are you planning ways to recover them later?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

I will be off the grid next week and away from all screens.  I’m looking forward to the time I’ll be spending away from the distractions of technology however much I love its’ gift of connectedness.  Look for my next posting on Tuesday, September 4th.

Have a safe and enjoyable Labor Day Weekend and consider being part of the conversation.

Be Well Again,

Martha

2 Comments

ME/CFS Perspective – Your Consent

8/14/2012

4 Comments

 
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Eleanor Roosevelt
I’ve been lucky to have many teachers and mentors in my life.  They’ve come from traditional as well as nontraditional directions.  One of my favorites is Eleanor Roosevelt.  Recently, I overheard a parent dumping a load of verbal judgment on his child and I started thinking about her famous quote, “No one can make you feel inferior without your consent.”  And I was remembering how hard it was when I was struggling with ME/CFS, to ignore the judgmental comments I received about my ‘weakness’.  That somehow I was at fault for being sick - that I was choosing to be sick.  And that the reason for my continued illness was a lack of will or just plain laziness.  I remembered how much that hurt being flung at a ‘work till you drop’ Type A personality like me.

When I finally understood that the path back to health needed to be a case study of one, that freed me from the burden of the ‘holier than thou’ judgments.  But it took conscious effort to ignore – to not give my consent for others to label me as inferior.

Another quote of Eleanor’s helped me through that time as well.  “Do one thing everyday that scares you.”  It took a great deal of courage to let go of so much in order to focus on getting well again.

How do you deal with the attitude of those who look at you and see weakness?  Or even laziness?  What are your strategies for withholding your consent?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

4 Comments

ME/CFS Energy – Intentional Use

8/7/2012

4 Comments

 
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© 2012 TSM
I’ve been doing some reflection of late on my priorities as I move into the second half of my life – OK I’m planning on becoming a centenarian but in the real actuarial world I’m way past the halfway mark.  So I’m an optimist.  There are worse things.

As I look forward, I’m trying to be intentional about what I focus on and how I spend my time.  I frequently think about the Annie Dillard quote, ‘How we spend our days is, of course, how we spend our lives.’  When I was struggling with ME/CFS and finally on the right path to unraveling the clues to my own version of ME/CFS, I constantly thought about conserving my energy.  Nowadays, in the ME/CFS community, we frequently talk about the energy envelope and how to carefully protect and nurture our energy progress.

What I think we miss in that approach is the opportunity to look forward and make intentional choices about how we will thoughtfully expend what energy we DO have.  And not to empty it out.  But to be aware of the choices we are making about how we spend our precious energy reserves and how that fits in with our longer term goals unrelated to our being in the midst of struggling with a cruel disease.

I realize that looking beyond the near future is tough for an ME/CFS patient but I think that it can add value and resolve to the work of getting back to health.  Do you think about how you’re spending your available energy in terms of what you want to be focusing on once you’re well?  Can intentionally using even a small amount of energy in that direction allay some of your frustration with thinking you’re wasting time?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

4 Comments
    Picture
    Hello,  I'm
    Martha Kilcoyne

    Welcome
     to our Community!

    After struggling with CFS for four years I am fortunate now to be fully well and making choices about how I want to live my healthy life.  One choice is to be an active part of the CFS community and to offer one voice from the fully recoverd to the dialogue.  I'm glad you're here!   For more about me, here's my Bio.

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