...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 New Year - Take a fresh look

1/5/2021

5 Comments

 
Picture
It’s a hackneyed part of our culture that everyone makes New Year resolutions which we earnestly pursue for one month.  Then we return to our old habitual patterns.  And every year we resolve not to let that happen yet again.  So here we are.  For many, it’s a desire to improve one’s health.  If you’re struggling with ME/CFS, the stakes and the rewards are much higher than the average person who just wants to look or feel healthier.  For us, it’s about reclaiming our lives and our ability to be fully functioning and present – to be well again.
 
I encourage you to take a fresh look at your version of ME/CFS.  Hopefully you are keeping a daily log of your activities, sleeping/resting times, symptoms and medications.  Step back and take an objective look at your patterns.  Look for periods of wellness.  What preceded those periods?  Replicate those patterns.  Look for periods of ill health or crashes.  What preceded those periods?  Don’t repeat those patterns.  Look at your symptoms.  Which are the most debilitating?  When do they flair up?  How can you treat them in order to short circuit the flair up?  Look at your sleeping patterns.  How can you improve the quality of your sleep?  How can you make your bedroom into your version of slumber heaven – light, sound, comfort and sleep aids.  Your daily log needs to be mined for clues as you find your path back to wellness. 
 

If you’ve made progress this year and you’ve managed to shed some of the symptoms that were masking your version of ME/CFS, awesome!  As you take a fresh look, you may get a clearer view of the key or central issues which characterize your version of ME/CFS and some insight into new approaches, strategies and clues to your next steps.  It was through this methodical periodic review that I eventually unraveled my version of ME/CFS and was able to be fully well again.  What will you focus on in this New Year?  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


5 Comments

ME/CFS Progress –Review Your Patterns

10/6/2020

0 Comments

 
Picture
For many, Fall is the gateway through which we return to familiar patterns after the long warm days of summer.  Hopefully, we’ve spent some time in the outdoors and had a break or two from the norm.  If you’re struggling with ME/CFS, the norm is the inability to function as a healthy person.  So, the long days of summer may have only served to put an exclamation point on your disability and frustration which could have resulted in a push-relapse cycle…
 
As we return to normal patterns, it is obviously subjective.  What a typical day looks like for one ME/CFS patient, can be completely different for another.  But as each patient looks back over the past year, it would be wonderful to see improved health since last Fall and disappointing to feel worse.  Which applies to you or those you care for?  How do you get on the improved track?
 
For some, patterns are the key - unique patterns for each patient.  Specific to each patient and situation.  The key to recognizing patterns is keeping a detailed health log.  As resistant as some may be to this idea, it is a focused way to get a handle on your unique version of this wastebasket diagnosis of ME/CFS.  A patient’s memory is impaired and often useless for holding the train of thought during a conversation.  How could the same person hold a week of patterns in his/her head?  And then have the recall to see progress over a year?

 
If you are a patient and you are not keeping a daily health record, start today.  Start right now.  Get a pad of paper, a spiral notebook, the back of an envelope – just start writing down a brief summary of your day.  If you have been keeping a record, what seems to be the most valuable information in your record?  What is missing and would help to know?  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.  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 Change – New Beginnings

9/8/2020

2 Comments

 
Picture
Although the official beginning of Fall will arrive on the Autumnal Equinox, the days after the long Labor Day weekend bring on the feel of the changing season.  Although some of us would enjoy an extra week or two of August weather, it’s time.  And nature reinforces that with the cooler nights and comfortable daytime temps.  When I was first sick with ME/CFS, I would grind on myself about another season come and gone – wasted – while I languished in bed.  I was still caught up in the desperate search to find someone who could cure me.
 
Then I finally began to realize that there wasn’t a silver bullet – even now, I’m sad that there isn’t – and that I needed a new approach.  A change - A new beginning.  I had been doing the same things over and over again and expecting a different outcome – as we all know, that’s the definition of insanity.  And yes, anyone would get a little insane if they knew they were physically ill but no one could or would provide some answers.
 
Many of us find change to be outside of our comfort zones.  But change is the way forward for many of life’s challenges.  ME/CFS is no exception.  It wasn’t until I took a hard look at myself and my specific version of ME/CFS that I began to heal and work my way back to full health.  Soap box – Are you keeping a daily journal?

 
What change will you bring to your approach to ME/CFS?  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 Recovery Goal – Our Aim is Off

8/25/2020

2 Comments

 
Picture
If you ask most people who are struggling with ME/CFS what they want, the answer is usually, “I want my life back!”  What most aim for is normalcy.  The ability to be the person they were before ME/CFS.  They want their family life, social life, work life and healthy life back.  They want to live again.  They don’t want restrictions and pacing.  They want the whole ME/CFS nightmare to go away.  And I was no different.  I searched and searched for the magic cure that would get me from nightmare to full health again.

During that search, I crashed and relapsed so many times that I really can’t number them.  It was brutal physically, mentally and emotionally.  Honestly, as my daughter would say, I was a hot mess.  The truth that I finally discovered is that no one can go from the cruelty of ME/CFS to full recovery in one magic step.  Not even two or three or ten.  And since I’ve been fully well again and I’ve met others who have fully recovered, not one of them ever found an instant cure.  If there was a key piece to their recovery, it was discovered as they recovered – as other symptoms began to receded, it became prominent.

So what’s your recovery goal?  Are you ready to get off the crash and relapse roller coaster?  For whatever reasons, some of us need to ride it longer than others.  When you’ve had enough, reassess your goal and correct your aim.  I finally realized that I needed to get to a pace where I could handle things and not get sicker.  A pace plateau.  Something I could sustain for weeks and not crash.  Then I would try a little bit more.  If I could handle it, I stuck with it for a long time to ensure that I didn’t get sick.  And so on.  If I couldn’t handle it, I quickly dropped back a step and settled in for a while.  Did I like this snail’s pace?  Of course not!  I hated it!  But I finally got my life back.  So where is your aim these 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 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 Halt – When we had other plans

3/3/2020

2 Comments

 
Picture
Recently we were driving along with a schedule for the day.  Then bang.  We had a tire blow out.  We were able to safely get to the side of road but that one event shot holes in the plan for the day.  As we began to assess the condition of our spare tire and whether all the parts of the jack were in the truck, I was reminded of how ME/CFS suddenly forced me to change my plans.

There I was, tooling along with my life plan and then suddenly – bang – I was so ill that I was bedridden.  And after going through the seemingly endless screening process, I was diagnosed with ME/CFS.  Not great news.

Back on the side of the road, we thought we had everything to change the tire and started in.  Then we realized that the jack crank was missing.  Great – that meant that we had to raise up the car one half turn at a time.  As I knelt by the car, inserting the lug wrench, turning a half turn, removing the lug wrench, moving it back to the other side, then reinserting and turning a half turn – over and over and over – I kept thinking about how ME/CFS required me to invent tools to get well because the normal methods didn’t work.  And getting well was agonizingly slow.  And repetitive.  And repetitive.  And really repetitive.

So having that flat tire abruptly changed my plans and it took more time than it should have because we didn’t have the right tools.  And getting ME/CFS abruptly changed my life plans and it took more time to get well from ME/CFS because we needed to invent the right tools.   What tools are you inventing?  What tools are you learning from others?  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 postings on Tuesdays.  And consider being part of the conversation.
Be Well Again,
Martha


2 Comments

ME/CFS – Are Genetics a Variable?

1/21/2020

2 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


2 Comments

ME/CFS New Year - Take a fresh look

1/7/2020

2 Comments

 
Picture
It’s a hackneyed part of our culture that everyone makes New Year resolutions which we earnestly pursue for one month.  Then we return to our old habitual patterns.  And every year we resolve not to let that happen yet again.  So here we are.  For many, it’s a desire to improve one’s health.  If you’re struggling with ME/CFS, the stakes and the rewards are much higher than the average person who just wants to look or feel healthier.  For us, it’s about reclaiming our lives and our ability to be fully functioning and present – to be well again.
 
I encourage you to take a fresh look at your version of ME/CFS.  Hopefully you are keeping a daily log of your activities, sleeping/resting times, symptoms and medications.  Step back and take an objective look at your patterns.  Look for periods of wellness.  What preceded those periods?  Replicate those patterns.  Look for periods of ill health or crashes.  What preceded those periods?  Don’t repeat those patterns.  Look at your symptoms.  Which are the most debilitating?  When do they flair up?  How can you treat them in order to short circuit the flair up?  Look at your sleeping patterns.  How can you improve the quality of your sleep?  How can you make your bedroom into your version of slumber heaven – light, sound, comfort and sleep aids.  Your daily log needs to be mined for clues as you find your path back to wellness. 

 
If you’ve made progress this year and you’ve managed to shed some of the symptoms that were masking your version of ME/CFS, awesome!  As you take a fresh look, you may get a clearer view of the key or central issues which characterize your version of ME/CFS and some insight into new approaches, strategies and clues to your next steps.  It was through this methodical periodic review that I eventually unraveled my version of ME/CFS and was able to be fully well again.  What will you focus on in this New Year?  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 Pacing – Protect Part of Your Day

10/1/2019

2 Comments

 
Picture
When you’re struggling to recover from ME/CFS, pacing is one of the most difficult challenges.  It’s too easy to get caught up in the flow of the day and lose control of what you had intended.  We quickly can become victim to over doing and triggering a relapse.  It can be absolutely maddening.  We know what we need to do and not do.  We have planned out the day.  It’s in alignment with the protocol we’re following and we know if we follow the plan then we will have a successful, positive day.

Then the unpredictable, real world seems to take over.  By the late afternoon we’ve either blown the plan to bits or we’re barely on track just hanging on.  And we seem to do this way too often.  OK, we’re human and we can forgive our weaknesses.  But ME/CFS is not forgiving.  ME/CFS is opportunistic and just waiting for an opening to assert itself like an energy gremlin.  So what to do?

One of the strategies I used was to plan my day with built in breaks.  I would sandwich them around the most demanding part of the day and sometimes also right in the middle if need be.   I would have ‘optional’ parts of the day that I could opt out of depending on my energy levels and what else was still required of me.  Essentially, I planned for the unpredictable.  I gave myself space in the day to rest and to do whatever self-care I needed.


How are you pacing for the unpredictable?  What part of your day do you protect?  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 Answers – Look Within

8/27/2019

0 Comments

 
Picture
​Several decades ago everyone was wearing buttons.  It was the rage at the time and we Americans totally obliged.  I was slow to the party.  There really wasn’t something so important that I wanted to assert it everywhere I went.  Then I saw a button that called to me.  It simply said – Begin Within.  Yes, this was a perspective that I knew well and would want to impart to all.  Skip forward to last week when I was rummaging thru a drawer and found it.  I was thinking about how this simple wisdom was the key to my struggle with ME/CFS.
 
It wasn’t until I stopped looking for answers from others and looked within.  That’s where I finally found the answers.  Of course, they weren’t spelled out in big letters.  They were hidden in my version of ME/CFS.  I had to do the work to find them but they were there.  Once I got on track with my daily record, the answers started to slowly surface.  Not in days or weeks, but months and years.  It took patience and pacing but it all started when I understood that I needed to – Begin Within.
 

Have you discovered some important clues to your recovery by beginning within?  What strategies have worked for 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.  And Guest Blogs are most welcome!
 
Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again, 
Martha

Picture
0 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

    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