...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Mantra – Pace, Pace, Pace

3/5/2019

2 Comments

 
Picture
We had a light snowfall this week so I went out to shovel the sidewalk.  It was only a couple inches of fluffy white so the going was easy.  As I scooped up and tossed each airy load, I began to get a rhythm going.  And of course I started to think about ME/CFS – my daily thankfulness for my return to full health is never far from the front burner.  I had developed two mantras during my struggle back from ME/CFS.  The first was Attitude, Attitude, Attitude.  It took me a long time to finally cut myself some slack about being sick and then about feeling like I was letting my family and loved ones down.  Not to mention dumping my anger at the medical community.
 
Once I started to accept the reality of my illness and my personal challenges, my mantra switched to what I could actually DO about my situation.  That’s when I took up my second mantra.  So as I tossed aside the snow, I began to softly, slowly chant, “Pace… Pace… Pace…”  Being attentive to my daily routines, my choices for energy expenditure and reluctantly pulling back on my own reins whether I liked it or not, were key to pacing myself back to health.  Yes - Of course I screwed up sometimes and wanted to kick myself but mostly I was firm in my commitment.  And I did my best to communicate that to others around me.

 
How are you doing with pacing?  What challenges you the most?  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 Struggle – Work Every Hour

6/28/2016

2 Comments

 
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Full disclosure – I have been a Boston Red Sox fan since I was a little girl.  I have no idea why the game captured my imagination so young but I got hooked and still am.  Like many of the devout, I am used to the highs and lows of my team.  Right now, we’re doing well.  And of course I’ve been watching the post-game interviews.  Without exception the players repeat the same mantra – work every pitch.  They remind me of my struggle with ME/CFS/SEID and how I was able to regain my full health.

Like the Red Sox who have approached this entire season with focus on “Every pitch, every out, every inning, every game”, I finally understood after two years of crazy push/crash cycles that I needed to bring my struggle with ME/CFS/SEID to “Every hour, every day, every week, every month.”  If I intended to be well again, I needed focus – consistent, every hour focus.
I needed to bring my struggle into the moment and make it the most important factor that effected each decision – everything had to be viewed through the window of my goal to regain my health.  And yes, I was blessed with the opportunity to make ME/CFS/SEID my focus every hour.  But it was not without deep sacrifices for me and for my loved ones.  This path is hard and long.  Some days seemed endless.  Some days I lost ground and some days I gained.

And like the Red Sox who went from last to first in one year with pitch by pitch focus, I regained my health in two years with hour by hour focus.  How are you bringing your struggle with ME/CFS/SEID into each hour of each day?  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
Go Sox!

2 Comments

ME/CFS/SEID Mantra – Pace, Pace, Pace

4/12/2016

2 Comments

 
Picture
We had a light snowfall last week so I went out to shovel the sidewalk.  It was only a couple inches of fluffy white so the going was easy.  As I scooped up and tossed each airy load, I began to get a rhythm going.  And of course I started to think about ME/CFS/SEID – my daily thankfulness for my return to full health is never far from the front burner.  I had developed two mantras during my struggle back from ME/CFS/SEID.  The first was Attitude, Attitude, Attitude.  It took me a long time to finally cut myself some slack about being sick and then about feeling like I was letting my family and loved ones down.  Not to mention dumping my anger at the medical community.
 
Once I started to accept the reality of my illness and my personal challenges, my mantra switched to what I could actually DO about my situation.  That’s when I took up my second mantra.  So as I tossed aside the snow, I began to softly, slowly chant, “Pace… Pace… Pace…”  Being attentive to my daily routines, my choices for energy expenditure and reluctantly pulling back on my own reins whether I liked it or not, were key to pacing myself back to health.  Yes - Of course I screwed up sometimes and wanted to kick myself but mostly I was firm in my commitment.  And I did my best to communicate that to others around me.
 
How are you doing with pacing?  What challenges you the most?  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 - Every Day Counts

4/2/2013

2 Comments

 
Picture
© 2013 TSM
I have a long-term goal, which I have been aiming to accomplish.  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, that was when 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?  What are your strategies?  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 Work – Dedicated Focus

7/31/2012

2 Comments

 
Picture
© 2012 TSM
I just returned from a long weekend in the Portland Oregon area where I attended my nieces’ wedding.  The setting was a beautiful vineyard outside of McMinnville – the informal capital of their Pinot Noir region.  The perfect rows of grape vines which stretched up the hillsides to the horizon and the carefully designed processing and aging facility, spoke to many years of dedication to the ultimate goal – the production of a fine wine.  And the tender and heartfelt vows spoken by the bride and groom as they stood on the sun drenched hillside were evidence of the years they had already dedicated to their successful partnership with many more to come.  As I witnessed all of this, I felt gratitude for my health and was reminded of the dedicated focus it required to get well.

A successful wine, a solid marriage and a return to full health all require work.  And the work must be done to the exclusion, at times, of all the other distractions of life.  The goals which are the hardest to achieve require the most focus and ultimately the sacrifice of other pursuits.  However, the rewards are also the greatest and most fulfilling.  A person often gives up years of other possibilities in order to harvest one great goal.

I gave up two years to my dedication to be well again - to the exclusion of everything else.  I am grateful that I had the support to be able to do that.  Are you able to prioritize recovery as the focus of your days?  How do you juggle things and still keep focused on your wellness goal?  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 Attitude – The Law of Attraction

7/24/2012

2 Comments

 
Picture
I was feeling down recently - kind of an internal implosion resulting from too many people and things weighing on me culminating with feeling sorry for myself.  For a period of time I allowed myself to be in that place.  And that was OK because sometimes we need to feel emotions in order to decide what to do about them.  And it gave me a small taste of my lowest points when I was struggling with ME/CFS.

I am however, at my innermost core, an optimist and that part of me eventually asserted itself and demanded that I move on.  I was reminded of the Law of Attraction and the theory that by focusing on either positive or negative thoughts, we attract the same energy or results.  The most documented example of this is the placebo effect which produces positive health results in blind medical trials where the patient is only given a simple sugar pill.  Patients are able to think themselves better. I was not aware that there is an equally well documented nocebo effect which produces negative health results in clinical trials where a placebo is used.  People who fear medication or who have a negative medical image can actually cause deterioration in their own health.  Powerful stuff.

For me that’s a strong statement about how much control we actually DO have in dealing with ME/CFS.  Once I turned the corner away from blame, denial and anger, and moved forward into solving my ME/CFS puzzle as a case study of one, I began to slowly get better.  And yes, I was actively managing my health every day and it was no accident that the daily scrutiny finally resulted in my return to health.  But my positive attitude directed at my determination to figure out my version of this cruel disease, was a huge factor in succeeding despite the long haul.  How do you manage your daily attitude in order to attract positive healing?  What strategies work 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.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

2 Comments

ME/CFS Mantra – Pace, Pace, Pace

1/17/2012

4 Comments

 
Picture
© 2012 TSM
We had a light snowfall last night so I went out to shovel the sidewalk this morning.  It was only a couple inches of fluffy white so the going was easy.  As I scooped up and tossed each airy load, I began to get a rhythm going.  And of course I started to think about ME/CFS – my daily thankfulness for my return to full health is never far from the front burner.  I had developed two mantras during my struggle back from ME/CFS.  The first was Attitude, Attitude, Attitude.  It took me a long time to finally cut myself some slack about being sick and then about feeling like I was letting my family and loved ones down.  Not to mention dumping my anger at the medical community.

Once I started to accept the reality of my illness and my personal challenges, my mantra switched to what I could actually DO about my situation.  That’s when I took up my second mantra.  So this morning, as I tossed aside the snow, I began to softly, slowly chant, “Pace… Pace… Pace…”  Being attentive to my daily routines, my choices for energy expenditure and reluctantly pulling back on my own reins whether I liked it or not, were key to pacing myself back to health.  Yes - Of course I screwed up sometimes and wanted to kick myself but mostly I was firm in my commitment.  And I did my best to communicate that to others around me.

How are you doing with pacing?  What challenges you the most?  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

4 Comments
    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.

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