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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 Repetition – Keep Your Sanity

7/5/2022

4 Comments

 
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This summer in New England has seen a lot of hot weather.  It hasn’t been two or three days in a row.  It’s been a long conga line of hot dry days.  Day after day and week after week.  And it’s only the second week in July.  I can’t remember the last time we had a good long rain.  I’m not an AC lover but it’s been on almost constantly.  And inevitably when I get into drawn out repetitive situations, I think about my struggle with ME/CFS.

When I finally quit riding the roller coaster after two brutal years and settled into the protocol, it was a long, repetitive, frustrating path.  Whenever I looked forward, the repetition seemed to spread out endlessly before me.  Like this long hot summer, it didn’t seem like it would ever end.  I had to find the courage to settle in.  I needed to take it a day at a time.  I needed to stick with the recovery plan and work it every day.  Honestly, I couldn’t think about how slow the pace was because it drove me crazy.  Much like this summer, I don’t think about how many more hot days are coming.  I take it day by day.  Right now, there’s another gorgeous sunny day outside my windows.  The kind I hoped for in the dead of winter.


My best days of dealing with the slow repetitious pace were when I looked over my health log and saw the real progress.  I was slowly making my way back to full health.  And the proof was right there written in black and white.  It was a balm for my sanity.  Are you on the slow, repetitious path that the protocol requires?  What helps you stay sane?  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 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 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 Recovery – Trust the Process

2/2/2021

0 Comments

 
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People use the word trust a lot.  I’m not sure if they really understand its meaning.  I recently had some sparks fly between me and someone I was working with on a project who is also a good friend.  We were both surprised by the sudden eruption but I told her it was OK because I trusted her.  I know her good intentions and the stress she’s feeling because her name is on the project.  And it reminded me of my struggle with ME/CFS when I was riding the daily roller coaster despite my efforts to follow the protocol.
 
On days when I was on schedule and feeling like I was managing my energy, getting rest and doing ‘the right things’, it was easier.  On days when I felt lousy and nothing seemed to be going according to plan, it was horrible.  Those bad days could do me in if I allowed myself to stay in that frustrated, down place.  I finally came to understand that I had to trust the process of recovery.  It’s easy to trust the process when you’re having a ‘good’ day.  The real test of trust comes when you’re having an ‘awful’ day.
 
So, on those awful days, I had to steer my frustration and depression back into trusting the process.  Of course, you have to have a process to place your trust in.  My process was my protocol with the daily record as the anchor.  It served not only as the grounded center of my work to solve my version of ME/CFS but it was an anchor for my sanity.

 
We all know too well how much fodder ME/CFS serves up for self bashing and depression and just ‘giving up’.  The process was my way of turning that negative energy into positive action to get well.  I placed my trust in that process even on the ‘bad’ days.  Do you have a process you can trust?  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

0 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 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

Recovery Opinions – Some More Hopeful Than Others

11/12/2019

2 Comments

 
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ME/CFS 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 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 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


2 Comments

ME/CFS Change – New Beginnings

9/10/2019

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 and the sighting of a morning school bus 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
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    Hello,  I'm
    Martha Kilcoyne

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     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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