...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/SEID Pacing - Truths and Miss Queues

4/26/2016

2 Comments

 
Picture
This spring in New England has been a strange cycle of early hot weather followed by days of cold, damp weather with a few nights below freezing.  And like most things that respond to warmth and sunlight, I was out in my garden in early March, clearing the flower beds of winter debris.  All of my perennials were sprouted and many already budding out way before their normal timeframe.  Now, after a few frosts, I look about and see damage on many of the flowers and shrubs.  And of course it reminds me of my successes and failures with pacing when I was struggling with ME/CFS/SEID.
 
It was so difficult to recognize the difference between solid progress where I could take the next step toward recovery and a good day which needed to be repeated at the same level for a while.  Of course my hope and emotions were almost always in the ‘this is it’ camp.  Unfortunately, most of the time I needed to stay where I was and follow the protocol until this new level of health was consistently repeated.  In the beginning, I jumped forward and was almost always rewarded with a set back.  Some more severe than others. But over time, I finally began to listen to my body’s call for restraint and to review my daily log for patterns that pointed to whether or not I was ready.
 
I admit that it took a strong hold on the reins at times when I really wanted to unleash a cantor.  Do you struggle with pacing?  How do you deal with miss queue days?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

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

Be Well Again,
 
Martha

2 Comments

ME/CFS/SEID Goals – One Step at a Time

4/19/2016

3 Comments

 
Picture© 2016 TSM
It’s a beautiful sunny day and the temperature is about 75 with low humidity.  During the endless cold winter, this was the kind of day many people conjured in their minds in order to get through till spring.  Here it is – just like we imagined.  Sweet.  I remember however that my desires for better weather didn’t go from worst day of winter to a perfect day in spring.  They were incremental.

At first I thought I wouldn’t be so cold if only the wind would stop blowing.  And when it ceased, I was warmer.  Then I thought it would be so much better if just the sun came out.  And then it did.  After that, I wanted the temps to get above freezing.  Then I thought it would be great if the icy sidewalks would melt.  And so on.  As spring slowly came, I got closer and closer to that perfect sunny day.  And of course this got me thinking about my struggle with ME/CFS/SEID and the goals I set back then.

After I decided to finally get off the insane ME/CFS/SEID push and crash roller coaster, I was at my sickest with ME/CFS/SEID.  Full disclosure – it took a horrendous crash to make the decision to permanently change my approach to healing.  I am a Type A after all.  My entire perspective on goals changed too.  I was no longer striving to ‘get my life back’.  I set simple, next step goals.  Making a sandwich and then having the strength to eat it.  Washing a few dishes.  Paying a bill.  When I could do those things, I worked on being able to take a shower without assistance.  The first time I drove the car to pick up a prescription was a big day even though I needed a nap right after I got home.  It seems hard to believe now.  But those small goals added up over a long period – one step at a time.  Eventually, the day came when I was feeling well again.

How are you setting wellness goals?  What’s your strategy?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

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

Be Well Again,

Martha

3 Comments

ME/CFS/SEID Mantra – Pace, Pace, Pace

4/12/2016

2 Comments

 
Picture
We had a light snowfall last week so I went out to shovel the sidewalk.  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/SEID – 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/SEID.  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 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 on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

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

Be Well Again,
 

Martha

2 Comments

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

4/5/2016

2 Comments

 
PictureIon Channels
We all understand that the very definition of ME/CFS/SEID 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/SEID 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/SEID 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 on the menu bar above this post.  And if you search for CFS and Channelopathy, there are more and more references online to this ion malfunction of cellular wall transfer.
 
Have you had any experience with ion therapy?  Did it help you?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

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

    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