...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Recovery - Every Day Counts

5/10/2022

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I have a long-term goal.  And I make progress in some ways but fall short in others.  It’s been a struggle.  I made a recent decision to rethink my time management around this goal and remembered a favorite quote from Annie Dillard, “How we spend our days is, of course, how we spend our lives.”  And I started to see the parallels between my recent approaches to this new goal and how I had initially reacted to my struggle with ME/CFS.  My approach had been inconsistent and I misunderstood the need to apply myself every day to my desire to get well.

So much of what I did in those early days of ME/CFS came out of frustration and anger.  But even when I moved past that, I still wasn’t focused on the importance of how I spent each and every day.  It took a while before I began to see each day as a building block, which was added to the day before.  And so on until I had built up a week of days, then a month of days and eventually many months and finally a year of days.  That added up to 365 days in a row of consciously working toward recovering my health.  When I finally understood the value and rewards of daily focus, I began to see real progress.


So our lives do reflect how we spend our days.  And one day at a time, each and every day, you can make progress toward regaining your health.  That’s the only way I was successful.  How do you focus on your recovery every day?  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


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ME/CFS Recovery - Every Day Counts

11/9/2021

0 Comments

 
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I have a long-term goal.  And I make progress in some ways but fall short in others.  It’s been a struggle.  I made a recent decision to rethink my time management around this goal and remembered a favorite quote from Annie Dillard, “How we spend our days is, of course, how we spend our lives.”  And I started to see the parallels between my recent approaches to this new goal and how I had initially reacted to my struggle with ME/CFS.  My approach had been inconsistent and I misunderstood the need to apply myself every day to my desire to get well.

So much of what I did in those early days of ME/CFS came out of frustration and anger.  But even when I moved past that, I still wasn’t focused on the importance of how I spent each and every day.  It took a while before I began to see each day as a building block, which was added to the day before.  And so on until I had built up a week of days, then a month of days and eventually many months and finally a year of days.  That added up to 365 days in a row of consciously working toward recovering my health.  When I finally understood the value and rewards of daily focus, I began to see real progress.


So our lives do reflect how we spend our days.  And one day at a time, each and every day, you can make progress toward regaining your health.  That’s the only way I was successful.  How do you focus on your recovery every day?  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

​

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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 Choices – What would you Decide?

6/25/2019

2 Comments

 
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Lately I’ve been making decisions about what I want to be doing – real, active, conscious decisions.  I’m getting to the point in my life where odds are, there is less of it ahead of me than behind me.  The term ‘bucket list’ has become popular.  But I’m not thinking about specific events or activities that I want to check off a list.  I’m thinking about the way I want to live my daily life.  And, of course, this has gotten me thinking about my struggle with ME/CFS and what I’m doing with my hard won, regained wellness.

Once I knew that ME/CFS was in my past, I did not choose to go back to the fast paced, stressful life that I led prior to being ill.  I decided to live a life focused on my family and to make better wellness decisions.  In retrospect, I’d say that I was reasonably successful in that choice.


If restoring your wellness is your current goal, imagine the kind of life you would choose to live, having been through all this, if you were well again.  Would you go back to the old pace?  The old ways of marginal self-care?  What kind of focus would you have in life as a well person?  When you think about your prior lifestyle choices, which would you resume?  What would you dump?  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 Goals – Celebrate Each One

5/21/2019

0 Comments

 
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The last couple weeks have been non-stop activity.  We have been celebrating a friend’s graduation from college with senior shows, events, special dinners and of course the official commencement ceremony.  She has been focused on getting here for the last four years and has been successful due in major part to her focus and undistracted commitment.  And of course I’ve been thinking about my struggle with ME/CFS.  How grateful I am to be well again and able to fully participate in the celebrations but also because she has succeeded the same way that I succeeded in recovering from ME/CFS.

After struggling for several years, trying everything we heard about and searching for the doctor who could give us the answers to my illness and the magic pill so I could get my life back, we finally realized that there wasn’t an easy answer.  So we decided to try a new approach.  The long term goal was to be fully well again.  But we knew that there were many small goals between the present and my healthy future.  We had to string many smaller goals together in order to reach the ultimate wellness goal.
​
And so it has been with my friend.  Over the course of four years, she has set her goals one semester at a time.  And for me it was this same step by step approach that finally worked.  I broke the whole goal down into reasonable chunks.  And as I achieved each goal, we celebrated.  I’m not talking parties.  Just simple recognition of what it took to get there and acknowledging the progress.  This gave me the validation to keep going.


So what’s your next short term goal on the road to wellness?  What have you celebrated lately?  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 Recovery - Every Day Counts

1/29/2019

4 Comments

 
Picture
I have a long-term goal.  And I make progress in some ways but fall short in others.  It’s been a struggle.  I made a recent decision to rethink my time management around this goal and remembered a favorite quote from Annie Dillard, “How we spend our days is, of course, how we spend our lives.”  And I started to see the parallels between my recent approaches to this new goal and how I had initially reacted to my struggle with ME/CFS.  My approach had been inconsistent and I misunderstood the need to apply myself every day to my desire to get well.

So much of what I did in those early days of ME/CFS came out of frustration and anger.  But even when I moved past that, I still wasn’t focused on the importance of how I spent each and every day.  It took a while before I began to see each day as a building block, which was added to the day before.  And so on until I had built up a week of days, then a month of days and eventually many months and finally a year of days.  That added up to 365 days in a row of consciously working toward recovering my health.  When I finally understood the value and rewards of daily focus, I began to see real progress.


So our lives do reflect how we spend our days.  And one day at a time, each and every day, you can make progress toward regaining your health.  That’s the only way I was successful.  How do you focus on your recovery every day?  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, February 12th.   And consider being part of the conversation.

Be Well Again,
Martha


4 Comments

ME/CFS Gifts – Pace Yourself

10/16/2018

4 Comments

 
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I’ve been thinking a lot about pacing - for myself, for my family, for the seemingly swirling world around me.  Are we goal driven or just driven?  Are we actually going anywhere?  Do we arrive?  Are we missing the whole point of the journey itself by never slowing down?  When I was struggling with ME/CFS, I was forced to slow down.  For a time, I was forced to completely stop.
 
It wasn’t until I began to recover, slowly but surely, that I also began to understand the ‘gift’ of being forced to slow down.  Not that I recommend ME/CFS as a good path to gaining perspective on pacing your life but it was how I got the message.  Making choices and pacing have become part of my new way of being.  I do smell the roses now.
 
If you worry about what you’re missing as you struggle with ME/CFS, this quote will make you smile.

"Slow down and everything you are chasing will come around and catch you.”     John De Paola
​
It reminds me of a Saturday morning cartoon where a dog is chasing a cat around in a circle.  The cat steps off to the side and just watches the dog who continues to run around the circle.  I can remember the road runner doing this to wile e coyote too.

 
Although ME/CFS is not the preferred method for receiving the ‘gift’ of pacing, it is the way we’ve received it.  Open it up and appreciate the message.  How are you pacing?  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

4 Comments

ME/CFS Recovery Goal – Our Aim is Off

7/17/2018

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.  I if 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 Plan – Only Keep Your Successful Strategies

1/16/2018

2 Comments

 
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I learned a new card game over the weekend with a specific deck that contained resource, action and reward cards.  The premise of the game was to start with a few cards and then slowly, through the gameplay, build a personal deck of select cards that you thought would be successful in winning the game.  On every turn you had to make choices about what to keep, what to acquire and what to aim for.  After playing three hands, of course I began to think about ME/CFS and how I had used a similar plan to get well.

After struggling for almost two years, only getting worse, I finally decided that I needed a better plan than my daily ‘how do I feel today?’ approach with the hope that by some miracle I would walk away fully recovered.  FYI – I’ve never heard of this actually working for a ME/CFS patient.  I decided that I needed a real plan.  One made up of a handful of strategies that had actually improved some aspect of my illness.  Over time I collected a record keeping strategy, a sleep strategy, a rest schedule strategy, a provider strategy, a nutrition strategy, a supplement strategy and a network for help strategy.  Each strategy alone wasn’t going to get me well by itself but as a complementary set of strategies I was able to not only make measureable progress but eventually return to full health.


In essence, I built a personal deck of strategies which I played each day much like the new card game I had learned albeit the stakes were much higher.  What strategies have worked for you and are in your personal ME/CFS plan deck?  What strategies have you discarded?  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

    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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