...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
  • Home
  • About
    • This Site
    • Martha
  • Participate
  • Contact
    • Contact Form
    • Submissions
  • Links
  • Book
  • Further Lessons
  • Thanks

ME/CFS Irony – Mind Over Matter

1/24/2012

4 Comments

 
Picture
© 2012 TSM
I did a lot of surfing and exploring of the definition of irony before I would even consider using the word.  As many have experienced, there is a current culture of ‘looking down one’s nose’ at the ignorant use of the term irony - Alanis Morissette a prime example of being taken to task by many.  I have decided that I’ll risk it.  Please feel free to chide me if your take is different.

Here’s my perspective.  We live in a culture where people are recognized, honored and even championed when they ignore the physical signals of their bodies and push themselves to the brink of their capacity - to a breaking point in the pursuit of some objective.  It’s lauded as the ultimate achievement of Mind Over Matter.  We see this most dramatically in athletic competitions but it also has a formidable presence in the work place, at home and even in personal leisure pursuits.  Ultimately, we are held up to the ‘You Can Do It All’ standard.  And in a lot of situations, we manage to get away with it for a while.

Then ME/CFS takes up residence.  I don’t think that it’s a coincidence that many ME/CFS sufferers would label themselves as Type A personalities prior to ME/CFS.  And so when we are challenged with something that threatens us to the core of our physical capacity, what’s the instinctual ‘go to’ solution?  Yes – Push Through It.  Mind Over Matter.  And we are shaken when this not only doesn’t work but it makes ME/CFS worse.  Not to mention the opinions expressed by others who observe and conclude that we’re soft, undisciplined, burnt out or just depressed.

So here’s the Dramatic or Tragic Irony.  The solution to personal challenges that has been engrained in us since childhood – Mind Over Matter – is the complete reverse of what is required to get control over ME/CFS and to ultimately recover.  And it is delivered, wrapped in an ugly package of judgment that we’re weak and in some way inferior.  Did I get it right?  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 Mantra – Pace, Pace, Pace

1/17/2012

4 Comments

 
Picture
© 2012 TSM
We had a light snowfall last night so I went out to shovel the sidewalk this morning.  It was only a couple inches of fluffy white so the going was easy.  As I scooped up and tossed each airy load, I began to get a rhythm going.  And of course I started to think about ME/CFS – my daily thankfulness for my return to full health is never far from the front burner.  I had developed two mantras during my struggle back from ME/CFS.  The first was Attitude, Attitude, Attitude.  It took me a long time to finally cut myself some slack about being sick and then about feeling like I was letting my family and loved ones down.  Not to mention dumping my anger at the medical community.

Once I started to accept the reality of my illness and my personal challenges, my mantra switched to what I could actually DO about my situation.  That’s when I took up my second mantra.  So this morning, as I tossed aside the snow, I began to softly, slowly chant, “Pace… Pace… Pace…”  Being attentive to my daily routines, my choices for energy expenditure and reluctantly pulling back on my own reins whether I liked it or not, were key to pacing myself back to health.  Yes - Of course I screwed up sometimes and wanted to kick myself but mostly I was firm in my commitment.  And I did my best to communicate that to others around me.

How are you doing with pacing?  What challenges you the most?  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 – Are Genetics a Variable?

1/10/2012

6 Comments

 
Picture
Sometimes realizations ooze quietly into your life and you need to look behind you to actually see them.  Sometimes they arrive via a lightning bolt epiphany.  My latest was the latter.  Over the holidays, my mother visited and we enjoyed many family conversations but the trigger came when she looked at a picture on my desk of her mother (my grandmother).  She hesitated, then asked, “Was that taken before or after she was sick?”  It took my brain cells a moment or two to remember that my grandmother had been sick for many years long before I was born.  She struggled to recover from either malaria or typhoid (my mom wasn’t sure which as she was a little girl at the time.)  “She was in an infirmary for many years because she was so tired and couldn’t handle the family and all the farm work”, my mom continued.  Click.  I then asked, “Mom, weren’t you sick for a long time after your last baby was born?”  “Oh yes, I just couldn’t get my strength back.  I was so tired all the time.  It took a couple years before I got strong again.”  I was the little girl at that time.  Click.  Click.  Click.

With a background in the scientific method, I’ve never been one to make gross assumptions based on anecdotal evidence.  During my struggle with ME/CFS, we poured over the published literature looking for clues to my illness and trends in the epidemiological write ups of mass illnesses (there was virtually no research to be found specifically on ME/CFS).  One piece that stuck with us was a gut certainty (now that’s scientific) that genetics had to be part of the puzzle.  Not the whole, but a variable in why my illness progressed as it did when others around me recovered and went back to their normal lives.

And as those Clicks got louder, the image of the other sick woman with the swollen belly and dark raccoon eyes in the doctor’s waiting room came back to me.  Our onset and illnesses were mirror images.  So once again, this certainty of a genetic component clicked into place.  This time it had three generations of anecdotes but still no scientific data.

Do you have any gut anecdotal feeling about the underlying causes of your version of ME/CFS?  Since it’s a wastebasket diagnosis, we could all be right.  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

6 Comments

New Year Resolutions – Take Control

1/3/2012

2 Comments

 
Picture
© 2012 TSM
I’ll be completely honest.  I’m not a fan of New Year resolutions because most of us set ourselves up for failure by selecting a goal which is too difficult and all encompassing.  These types of resolutions require the individual to change most of their way of being in the timeframe of an overnight.  Is there anything wrong with challenging ourselves with self improvement?  Absolutely not.  But when you’re struggling with ME/CFS, let’s not add just one more big failure to the pile of reasons why we sometimes grind on ourselves.

Although the patients experience with ME/CFS can differ, there is one consistent thread that I hear from everyone – Helplessness.  This disease persistently beats us down.  With the lack of recognition, with the lack of medical treatment, with the lack of understanding from many of those around us, and with our own self doubts.  It can be daunting.  And in the face of this, it can be easy to allow ME/CFS to control us and to give in.  We forget that there are aspects of this disease that we do have control over.

We control our daily choices about rest, nutrition and supporting our immune systems.  We control our data collection and review of patterns.  We control how we communicate and seek support.  We control our own attitudes and approach to ME/CFS.

I encourage you to start by taking control of just one of these areas of your ME/CFS struggle.  Then over time as you feel confident in that area, add something else.  Slowly, patiently and consistently begin to take back what you can control about ME/CFS.

My wish for all of you is a year filled with step by step success in taking control of ME/CFS.  Where are you going to start?  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

2 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.

      Join Our Community
      Enter your email address to
      follow this blog.

    Join

    For Books, Supplements, Sleep aids and more

    Picture

    Archives

    December 2022
    October 2022
    September 2022
    August 2022
    July 2022
    June 2022
    May 2022
    April 2022
    March 2022
    February 2022
    January 2022
    December 2021
    November 2021
    September 2021
    August 2021
    July 2021
    June 2021
    May 2021
    April 2021
    March 2021
    February 2021
    January 2021
    December 2020
    November 2020
    October 2020
    September 2020
    August 2020
    July 2020
    June 2020
    May 2020
    April 2020
    March 2020
    February 2020
    January 2020
    December 2019
    November 2019
    October 2019
    September 2019
    August 2019
    July 2019
    June 2019
    May 2019
    April 2019
    March 2019
    February 2019
    January 2019
    December 2018
    November 2018
    October 2018
    September 2018
    August 2018
    July 2018
    June 2018
    May 2018
    April 2018
    March 2018
    February 2018
    January 2018
    December 2017
    November 2017
    October 2017
    September 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    August 2013
    July 2013
    June 2013
    May 2013
    April 2013
    March 2013
    February 2013
    January 2013
    December 2012
    November 2012
    October 2012
    September 2012
    August 2012
    July 2012
    June 2012
    May 2012
    April 2012
    March 2012
    February 2012
    January 2012
    December 2011
    November 2011
    October 2011
    September 2011
    August 2011
    July 2011

    Categories

    All
    Appreciation
    Attitude
    Being Positive
    Brain Fog
    Choices
    Community
    Connect
    Coping
    Data
    Diagnosis
    Doctor
    Emotions
    Energy
    First
    Food
    Funding
    Genetics
    Goals
    Gratitude
    Groups
    Guest Blog
    Gut Feelings
    Health
    Helping
    Holidays
    Hope
    Humor
    Immune Support
    Inner Voice
    Ion Channelopathy
    Irony
    Isolation
    Journal
    Log
    Mantra
    Memory
    Mind
    Negativity
    Nutrition
    Opinions
    Organizations
    Outlook
    Pace
    Participate
    Patience
    Patterns
    Personality
    Perspective
    Protocol
    Provider
    Pushing Too Hard
    Pushing Too Hard
    Record
    Recovery
    Relapses
    Research
    Resolutions
    Rest
    Sleep Depravation
    Step By Step
    Step By Step
    Strategies
    Supplements
    Support
    Take Control
    Take Control
    Thankfulness
    Vacation
    Variables
    Version

    RSS Feed

    Picture
    Copyright © 2011-2012
    Triple Spiral MEDIA LLC