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ME/CFS New Year - Take a fresh look

1/24/2023

0 Comments

 
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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!

Consider being part of the conversation.

Be Well Again, Martha


0 Comments

ME/CFS New Year - Take a fresh look

1/4/2022

4 Comments

 
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​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

4 Comments

ME/CFS Change – New Beginnings

9/21/2021

4 Comments

 
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With the arrival of the Autumnal Equinox, we truly begin to feel the changing season.  Although some of us would enjoy an extra month of August weather, it’s time.  And nature reinforces that with 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 postings on Tuesdays and consider being part of the conversation.
 
Be Well Again,
Martha
​

4 Comments

ME/CFS Answers – Look Within

6/8/2021

2 Comments

 
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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


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2 Comments

ME/CFS Feng Shui – How Does Your Energy Flow?

2/23/2021

5 Comments

 
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I was recently rearranging the furniture in my family room in order to accommodate a new door.  I also just wanted a new look without buying new furniture.  As I began to move things around, I was surprised at how different the same things could look and function just by rearranging them. The energy in the room changed too.  It felt airier and brighter – it flowed better.   Of course this got me thinking about ME/CFS and how poorly my energy flowed.

For most of the first half of my struggle with ME/CFS, I didn’t regulate my energy at all.  I burnt up whatever I had then crashed.  There was no pacing.  There was no intension to plan my day around what I could reasonably handle.  And most important, there was no progress toward getting better.  The opposite was true.  I was getting worse.

Once I decided to take more control of my ME/CFS, my energy flow changed dramatically.  Instead of the abrupt go, go then stop, stop, stop, I began to use my energy reserves at a slow but steady pace.  Much like the familiar Tortoise and Hare story, I was slowly getting back to wellness one day at a time.  And over a long period of time I got there.  Sadly, I’m guessing that I left a few Hares behind still trapped in the cruelty of ME/CFS.


I’m sitting in my newly rearranged family room as I write.  What a difference.  The energy is flowing easily - not rushed or stopped up.  How are you managing your energy flow?  Have you embraced your tortoise?  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 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

 
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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

 
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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

 
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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

 
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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
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    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.

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