...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 Emotions - Droughts and Deluges

4/24/2012

0 Comments

 
Picture
© 2012 TSM
We have been experiencing a drought in New England since the first of the year.  The normal Spring rains which enable the flowering of bulbs and perennials have been absent.  Then last week the weather forecasters were a buzz about the storms moving up the eastern seaboard laden with much needed water.  As the front got closer, things shifted to warnings about flooding and washouts.  And of course I began to think about the constant emotional peaks and valleys I experienced when I was struggling with ME/CFS.

As with all emotions that we actively fight to contain, they are held at bay by intentional shoring up with periods of overspills which always seem to be triggered unexpectedly.  The cruelty of ME/CFS only served to amplify the intensity of these highs and lows.  My first year was full of frustration with the medical community that labeled me as a head case.  With few exceptions I was looked upon as ‘mentally weak’ and in need of therapy.  After a period of permitting that negativity to cling to me, I finally rejected it.  But I was still left with a pattern of extremes where sometimes the skies would dump a deluge of emotions and I would struggle to tread water.  After climbing out of that, I would experience a period of emotional drought when I could stay focused on the protocol and the slow but observable progress toward getting well again.

This Focus helped me to eventually steer away from emotional lows.  How do you manage this aspect of the cruelty of ME/CFS?  How do you shore yourself up?  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

0 Comments

ME/CFS Contributing – Because I Can

4/17/2012

4 Comments

 
Picture
© 2012 TSM
In August of 2000, I was able to celebrate my full return to health by summiting Mt. Kilimanjaro in Tanzania Africa.  It was a personal moment.  When I returned home, I decided that I wanted to show my gratitude by giving back.  The next Spring, I joined the annual Walk for Hunger sponsored by Project Bread.  On the first Sunday of each May, we walk 20 miles to raise money for all the food pantries, food kitchens and food programs throughout the New England region.  This year will be my 12th walk.
 
And each year, with every step, I remember my ME/CFS days when I couldn’t walk across a room without collapsing in a chair.  I remember the darkest bed ridden days.  I remember my anger at the medical profession – which I admittedly still harbor.  I remember the frustration with my snails pace recovery.  But mostly I remember that I am blessed to be well and that there are so many who are still struggling with this cruel disease.

I set up my donation webpage this morning and it is an honor – yes truly – to be able to contribute because now I can.  And I encourage everyone to be a positive influence on those around you and especially on yourself despite your struggle – or a loved ones struggle – with ME/CFS.

Are you able to contribute in any way?  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

If you wish to make a donation, here’s a link to my webpage.

4 Comments

ME/CFS My Version – Ion Channelopathy - Could It Be Yours?

4/10/2012

4 Comments

 
Picture
© 2002 Nature Publishing Group Marbán, E.
We all understand that the very definition of ME/CFS means that we don’t all have the same disease – just the same label.  We’ve been culled into a symptomatic description of a syndrome that includes many disease possibilities.  No one has the answer that will cure all of us no matter how much we wish it were true.  With that disclaimer out of the way, I’m going to pull out my soap box and write about my version of ME/CFS and what I think was the key to my full recovery.  My reason for doing this is that I feel strongly that some percentage of those labeled with ME/CFS or Fibromialgia have what I had.  If this helps just one person recover, I’m thrilled.

Ion Channelopathy – As part of my eight step protocol I drank an 8oz can of V-8 vegetable juice everyday.  My intention was to add salt to my diet so that my chronic low blood pressure would rise to a more normal level (so please don’t start chugging salt as it can be dangerous).  I was not aware at the time that I was also providing my metabolism with a liquid Ion Cocktail - full of high dose, easily available ions – specifically sodium, chloride, potassium and calcium (the calcium was taken as a supplement at the same time).  If you feel that this may apply to you, you should discuss it with your medical practitioner before undertaking any course of treatment.  Under the supervision of a medical doctor, you can determine any contraindications and regularly monitor your blood pressure.

I wrote up a full description of my thoughts on this for a later edition of my book.  In case you have an earlier version, read about Ion Channelopathy under Further Lessons.

Have you had any experience with ion therapy?  Did it help you?  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 Memory – Write It Down

4/3/2012

2 Comments

 
Picture
© 2012 TSM
As I age, my memory seems to fail me at unexpected times.  I can’t recall the name of a flower that I’ve know for a decade or the name of a street that I’ve driven a thousand times.  Recently, I couldn’t remember the name of a friend’s daughter and I wrestled with my memory to pull it up as I stood there with a blank stare on my face.  And of course it reminded me of the brain fog I experienced daily when I struggled with ME/CFS.

During my ME/CFS days, I would be in conversation and the entire topic and my thoughts would slip away into an awkward silence.  Trying to pay bills or add up simple numbers was painstaking.  But most of all, I would loose track of entire days or weeks.  I couldn’t recall the simplest timelines.  And I struggled to get any sense of progress until I made the commitment to write it down.

Ok, I admit to having a mantra about keeping a Daily Record.  And it stems from the realization that it was my daily record that over time gave me the clues to My Version of ME/CFS.  I encourage everyone who is struggling with this cruel disease to faithfully keep a record of sleep, activities, rest periods, food and medications during the course of each day and night.  It takes about five minutes a day to write it down in a simple, easy-to-scan format.

What kind of record do you keep?  What information has proven invaluable?  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