...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 Hope – Paired with a Wellness Plan

5/19/2020

2 Comments

 
Picture
While I was in the depths of my struggle with ME/CFS, I had the opportunity to be seen in a Boston clinic where I thought they were familiar with ME/CFS.  The first doctor I saw there, after my complete lab work up and physical exam, was truly unhelpful.  He told me that there was nothing physically wrong with me and that I should go home and “have hope”.  At that moment, he was the recipient of all the rage about having ME/CFS that was pent up inside me.  His eyebrows may still be singed.
 
When I finally started working with another doctor at that clinic, and treating myself like a case study of one, I began to see slow but real progress.  It was then that I opened up to a collaboration of hope paired with a wellness plan.  As I worked through my physical illness and worked with my daily patterns, I also began to work on my attitude.  Prior to ME/CFS, I was an optimist by nature.  But ME/CFS had tainted my outlook.  It was beyond frustrating to be struggling with a physical illness that almost no one understood or even acknowledged to be real.  So, I began an intentional effort to raise my spirits and have some hope for recovery.  As I look back now, this was only possible because I was beginning to see glimmers of physical progress and I had determined to devote my immediate future to being well again.

 
I understood that hope without a focused effort to be physically well is equally as ineffective as a wellness plan without hope.  For me, they needed to be paired.  How do you balance your physical recovery plan with your outlook?  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 posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,
Martha


2 Comments

ME/CFS Optimism – Brighter Days

4/7/2020

0 Comments

 
Picture
It happens to me every year around the beginning of April.  Although I don’t see the signs of change in myself yet, one of my window plants catches my notice.  There’s a new vibrancy in its color or maybe even a tiny sprout where a dead leaf had dropped.  Something triggers my attentiveness and before I’ve cognitively made the connection, I’m trimming, repotting and fertilizing all my plants.
 
What my plants have all been responding to, and what I’m also caught up in, are the longer days with brighter light streaming in my windows.  And I think back to my ME/CFS days and remember how hard it was day after day, week after week and month after month to keep my spirits up.  To remember my resolve to keep to the protocol, to allow myself the space to heal, and most importantly to cut myself the mental slack I needed.  The only time I didn’t need to be intentional about being upbeat was when the light began to get noticeably brighter at this time of year.  There’s a reaction to the increasing daylight that we experience on a cellular level.  I’m sure there are reams of scientific studies that have investigated this response but I don’t need to read them.  My sense of renewal and optimism are palpable.  And during my ME/CFS struggle, it was natural to see this NOT as the marking of another year of this cruel illness, but as the beginning of the year when my progress would get me to the next health plateau – the next stage of recovery.

 
I’m hoping that you are able to harness this brighter light and natural source of anticipation to carry you successfully along your path back to wellness.  Please COMMENT 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


0 Comments

ME/CFS Optimism – Brighter Days

3/19/2019

2 Comments

 
Picture
It happens to me every year around the end of March.  Although I don’t see the signs of change in myself yet, one of my window plants catches my notice.  There’s a new vibrancy in its color or maybe even a tiny sprout where a dead leaf had dropped.  Something triggers my attentiveness and before I’ve cognitively made the connection, I’m trimming, repotting and fertilizing all my plants.
 
What my plants have all been responding to, and what I’m also caught up in, are the longer days with brighter light streaming in my windows.  And I think back to my ME/CFS days and remember how hard it was day after day, week after week and month after month to keep my spirits up.  To remember my resolve to keep to the protocol, to allow myself the space to heal, and most importantly to cut myself the mental slack I needed.  The only time I didn’t need to be intentional about being upbeat was when the light began to get noticeably brighter at this time of year.  There’s a reaction to the increasing daylight that we experience on a cellular level.  I’m sure there are reams of scientific studies that have investigated this response but I don’t need to read them.  My sense of renewal and optimism are palpable.  And during my ME/CFS struggle, it was natural to see this NOT as the marking of another year of this cruel illness, but as the beginning of the year when my progress would get me to the next health plateau – the next stage of recovery.

 
I’m hoping that you are able to harness this brighter light and natural source of anticipation to carry you successfully along your path back to wellness.  Please COMMENT 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 my next posting on Tuesday April 9th.  And consider being part of the conversation.

Be Well Again,
Martha

2 Comments

ME/CFS Optimism – Brighter Days

4/3/2018

2 Comments

 
Picture
It happens to me every year around the end of March.  Although I don’t see the signs of change in myself yet, one of my window plants catches my notice.  There’s a new vibrancy in its color or maybe even a tiny sprout where a dead leaf had dropped.  Something triggers my attentiveness and before I’ve cognitively made the connection, I’m trimming, repotting and fertilizing all my plants.
 
What my plants have all been responding to, and what I’m also caught up in, are the longer days with brighter light streaming in my windows.  And I think back to my ME/CFS days and remember how hard it was day after day, week after week and month after month to keep my spirits up.  To remember my resolve to keep to the protocol, to allow myself the space to heal, and most importantly to cut myself the mental slack I needed.  The only time I didn’t need to be intentional about being upbeat was when the light began to get noticeably brighter at this time of year.  There’s a reaction to the increasing daylight that we experience on a cellular level.  I’m sure there are reams of scientific studies that have investigated this response but I don’t need to read them.  My sense of renewal and optimism are palpable.  And during my ME/CFS struggle, it was natural to see this NOT as the marking of another year of this cruel illness, but as the beginning of the year when my progress would get me to the next health plateau – the next stage of recovery.

 
I’m hoping that you are able to harness this brighter light and natural source of anticipation to carry you successfully along your path back to wellness.  Please COMMENT 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

Recovery Opinions – Some More Hopeful Than Others

5/9/2017

0 Comments

 
Picture
ME/CFS/SEID patients seem to be firmly in either the ‘can’ or ‘can’t’ recover camps.  As one might guess, most of the opinions can to be related to whether or not each has been able to recover.  And then there are the rest: fence sitters who are hopeful and want recovery to be possible. 
 
For me, I keep coming back to what I feel is so unfair about this ME/CFS/SEID diagnosis.  The fact the even though thousands of patients get this label, they actually don’t all have the same disease.  So using the same treatment and approach, two patients can have completely different outcomes.  Or one has great success and the other minimal improvement.  Yes, I believe that ME/CFS/SEID patients can recover.  Can they all recover using the same treatment?  No.  Can they recover using the same protocol and strategies?  Call me crazy but my answer is yes.
 
My training as a health professional drilled into me two things:  first, despite all the marvelous progress that medicine had made over the last century, we still only know and understand a small portion of the intricacies of the human body.  Second, the way that we learn things is to collect data, hypothesize, test, evaluate and then collect more data, etc.

 
Personal data collection (yes, I keep harping on this) and successful strategies seem to be the way out for many.  Have you developed any strategies that work for you?  Please COMMENT 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

0 Comments

ME/CFS/SEID Hope – Take Action

5/2/2017

2 Comments

 
Picture
Recently the Dalai Lama was visiting the Boston area and we were able to watch one of his talks via live stream on the web.  Like most spiritual leaders, he shared some universal ideas about our common humanity.  After his talk, he answered questions from the audience.  One person asked if he prayed and did he feel that prayer was helpful for creating world peace.  His answer was quick and emphatic.  “No!  Not prayer or hope or blessings.  For change, you need action.”
 
I immediately thought back to my struggle with ME/CFS/SEID.  Although hope was good to have, it didn’t get me anywhere without action to back it up.  It wasn’t until I stopped looking for someone else to cure me that I finally started to make progress toward wellness.  It was the specific actions from my protocol that got me well.  And of course I was optimistic and hopeful as much as I could manage.  But that didn’t allow me to defeat ME/CFS/SEID.  It was the day-to-day, week-to-week, month-to-month actions I took to bring about my recovery.

 
So my reaction to the Dalai Lama’s answer was a big smile.  He knows what he’s talking about.  How do you turn your hope for recovery into action?  What strategies do you use?  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 Apprehension – Letting It Go

3/14/2017

2 Comments

 
Picture
It’s been a challenging couple of weeks for me.  Things are settled for now but I know that the future will at some point entail more of the same kind of challenges.  And I feel a kind of apprehension about it.  Of course it’s reminded me of the feelings that used to affect me when I was struggling with ME/CFS/SEID.
 
I had tried mightily to not let feelings of anxiety or fear of more bad days get to me.  My cognitive brain accepted that I would have to deal with them as I slowly recovered but my emotions and psyche were uneasy – waiting for the signs and body pain that would be the harbinger of a bad day.  Sometimes I would allow this anxiety to effect my day even if it was by comparison a reasonable day.  It took a great deal of intentional focus to see the positive side of how I was physically feeling.  And to ignore the anxious voice inside of me.
 
The strategy that finally worked for me was planning ahead.  During the time I was bedridden, I would plan by the hour.  What should I be doing during the next few hours to achieve a good outcome?  As I got healthier, I planned by the day.  What should my day look like in order to stick to the protocol and have a successful day?  Eventually, I was looking at a week and planning a well paced reasonable series of days that generated a positive result.  It seems simple but it worked.

 
How do you let go of the apprehension?  What are your strategies?  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 Hope – Paired with a Wellness Plan

10/25/2016

2 Comments

 
Picture
While I was in the depths of my struggle with ME/CFS/SEID, I had the opportunity to be seen in a Boston clinic where I thought they were familiar with ME/CFS/SEID.  Eventually I did find a doctor there who successfully worked with me.  But the first doctor I saw there, after my complete lab work up and physical exam, was truly unhelpful.  He told me that there was nothing physically wrong with me and that I should go home and “have hope”.  At that moment, he was the recipient of all the rage about having ME/CFS/SEID that was pent up inside me.  His eyebrows may still be singed.
 
When I finally started working with a doctor and treating myself like a case study of one, I began to see slow but real progress.  It was then that I opened up to a collaboration of hope paired with a wellness plan.  As I worked through my physical illness and worked with my daily patterns, I also began to work on my attitude.  Prior to ME/CFS/SEID, I was an optimist by nature.  But ME/CFS/SEID had tainted my outlook.  It was beyond frustrating to be struggling with a physical illness that almost no one understood or even acknowledged to be real.  So I began an intentional effort to raise my spirits and have some hope for recovery.  As I look back now, this was only possible because I was beginning to see glimmers of physical progress and I had determined to devote my immediate future to being well again.

 
So hope without a focused effort to be physically well is equally as ineffective as a wellness plan without hope.  For me, they needed to be paired.  How do you balance your physical recovery plan with your outlook?  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

SEID/CFS Optimism – Brighter Days

3/10/2015

2 Comments

 
Picture
It happens to me every year around the beginning of March.  Although I don’t see the signs of change in myself yet, one of my window plants catches my notice.  There’s a new vibrancy in its color or maybe even a tiny sprout where a dead leaf has been dropped.  Something triggers my attentiveness and before I’ve cognitively made the connection, I’m trimming, repotting and fertilizing all my plants.

What my plants have all been responding to, and what I’m also caught up in, are the longer days with brighter light streaming in my windows.  And I think back to my SEID/CFS days and remember how hard it was day after day, week after week and month after month to keep my spirits up.  To remember my resolve to keep to the protocol, to allow myself the space to heal, and most importantly to cut myself the mental slack I needed.  The only time I didn’t need to be intentional about being upbeat was when the light began to get noticeably brighter at this time of year.  There’s a reaction to the increasing daylight that we experience on a cellular level.  I’m sure there are reams of scientific studies that have investigated this response but I don’t need to read them.  My sense of renewal and optimism are palpable.  And during my SEID/CFS struggle, it was a natural to see this NOT as the marking of another year of this cruel illness, but as the beginning of the year when my progress would get me to the next health plateau – the next stage of recovery.

I’m hoping that you are able to harness this brighter light and natural source of anticipation to carry you successfully along your path back to wellness.  Please COMMENT 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 Research – Are we Getting Closer to a Diagnostic Test?

11/4/2014

4 Comments

 
PictureMichael Zeineh / Stanford University
For those of us who have been suffering with ME/CFS for years if not decades, we know that it’s a real physical disease.  Even though most practitioners have told us that ‘it’s all in your head’, we’ve known that someday the research would finally catch up with the cruel reality of ME/CFS.  Now, a research team out of Stanford, using new brain scan technology, has reported finding significant differences between healthy people and those who are suffering with ME/CFS.  It was reported in many news outlets.  Here is the link to a write up in Today.  Read it if you haven’t seen it already.

http://www.today.com/health/chronic-fatigue-real-new-brain-scans-show-1D80250083

Reading this article cheered me up!  OK, I’m an optimist at heart and I’m ready to go there.  But not only did this study receive attention, mainstream audiences heard about it.  That means that the negative viewpoint of ME/CFS might start to change.   And, the researchers found inflammation in brain nerve cells which could possibly have been triggered by a viral infection.  Duh!  For decades, many ME/CFS sufferers have said that they caught a flu that they never recovered from.

Of course, this study needs to be repeated and it will take time to gather more data.  But for now, it’s exciting to think that we could be getting closer to not only understanding the underlying cause of ME/CFS but possibly a successful treatment.  OK, I said I was an optimist.  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

4 Comments
<<Previous
    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