...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Energy – Deflecting the Negative

6/26/2012

2 Comments

 
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© 2012 TSM
I’ve been thinking a lot about the ‘energy envelope’ that most ME/CFS patients work to conserve.  When I was sick, this wasn’t part of the understanding of ME/CFS as much as it is now.  But even today, the emphasis is on physical energy and what we decide to spend it on.  And yes, we all have limited physical energy reserves and being intentional about how they get used is critical to our struggle to be well again.

 But often, I think that we forget that psychological and emotional energy is also a part of that ‘energy envelope’.  We don’t have to move out of a chair to burn up a lot of energy worrying about our responsibilities or being angry at the medical system or berating ourselves for being sick.  It all burns up precious energy and runs us down.  Then we encounter others who further drain our energy by off handedly diagnosing us per some stereotype or the latest news blurb about ME/CFS.  It eats up a lot of emotional and psychological energy dealing with these outside stresses as well.

One of the strategies that I finally mastered was deflecting this negative psychological energy.  After allowing myself to absorb too much of it, from both external sources as well as self inflicted, I realized that it was just as much of a drain on my precious ‘energy envelope’ as actual physical activity.  So I started with myself.  I built a wall around my psyche that refused to allow negative self judgment to enter.  It was such a wonderful release to let all that self berating slip away!  Then, like a skilled matador, I learned to step aside when those negative external people came into my space and I let those toxic attitudes slide right by me.  I refused to own them or even deal with them.

Honestly, I still do this today.  I’ve learned through my struggle with ME/CFS that I can choose not to deal with other peoples’ baggage about my illness or anything else.  How do you deal with conserving your psychological energy?  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 Reality – Commit to Being A Patient

6/19/2012

4 Comments

 
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© 2012 TSM
I recently received an e-mail from a physician who has been struggling with ME/CFS for several years.  Like many of us, he has been given the ‘go home and have hope speech’, has gone to the high priced medical clinic to no avail, and has been treated by compassionate practitioners who haven’t been able to help him either.

Now, he’s as sick as he was at the beginning.  Square One.  SO Frustrating.  And SUCH a familiar story.  So many of us have gone this route of exploring every path we can think of knowing that we have a real physical illness.  And only making small inroads.  Glimmers of hope that eventually fade.  And often, we find ourselves back at Square One.

If you’ve read my book, you know that when I got back to square one that was when we decided to turn me into a lab rat.  I literally spent a year in bed on a fixed schedule no matter how I was feeling.  I allowed myself to increase my activity - in very small increments - only when I had a solid period of time without any problems.  This was in many ways torture for a type A like me.  But I stuck to the plan because everything else had failed.  I stopped looking for the miracle and focused on unraveling the clues to my own version of ME/CFS.

The biggest obstacle I had was allowing me to be sick.  To be a patient.  To commit to giving up functioning for a while in order to get a normal life back down the road.  And I think I needed to waste all the other time on those other paths.  It drove home the point that I wasn't getting anywhere going at this half heartedly.  Those were wasted years anyway so what was one more year if it paid off?  I know that this is not an option for many people because of responsibilities.  But somehow, it’s important to relinquish our need to find the ‘silver bullet’ and get focused on figuring out how to get well.

How do you deal with the struggle between getting well again and also having a life?  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

4 Comments

ME/CFS Common Ground – Not What Divides Us

6/12/2012

4 Comments

 
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Our political discourse these days seems to have devolved into a contentious ‘Us and Them’ battle.  Anything, no matter how insignificant, that could possibly make the ‘other guys’ look bad becomes fodder for the media to trump up and exploit for days and weeks.  Meanwhile, nothing is getting done.  No matter what your political view point, this nasty gridlock is frustrating.  I recently read about a ridiculous series of political volleys and it got me thinking about how I sometimes see this same illogic in the ME/CFS medical field.

 As patients struggling with ME/CFS day after week after month after year, we are always hopeful that a significant new medical or research break through will be the answer that liberates us from this cruel disease.  And I can only imagine how hopeful researchers and medical practitioners can be that they are onto a solution or an effective treatment that will be ‘the silver bullet’.  They can seem just as certain that they have the answer and honestly, sometimes severely critical of other ideas being wrong.  With resources and money scarce in this economy, it can start to sound a bit like our political discourse.  But realistically, we all know that ME/CFS is a waste basket diagnosis.  There are many versions of ME/CFS lumped in together.  They could all be onto the key to different diseases that could be culled out of the waste basket.

In the meantime, as patients, we need to focus on our common ground and support each other as we struggle to get well.  Work to understand our own versions of this cruel disease, follow the clues of our patterns and carefully pace, pace and pace.

How do you react to the squabbles among researchers?  Have you found any ‘common ground’ strategies to share?  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

ME/CFS Brain Fog – Write It Down

6/5/2012

4 Comments

 
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In the last two weeks I have been on a whirlwind of travel:  A wedding, a graduation, an engagement party, a baby shower, an annual family gathering, a retreat for my daughters friends and finally some quality time together for my immediate family.  When I finally sat down at my computer on Sunday, it all seemed like a blur.  I could hardly recount the details of the elapsed time.  And of course I began to think about the ever present brain fog that plagued me when I was struggling with ME/CFS. 

During that time, my brain felt like a thick brick on the verge of succumbing to a two week flu.  But I just remained in that state for month after month until a year had passed and more.  My agility with numbers was lost.  My train of thought in conversations was non existent.  And most importantly my sense of time, of lost hours, of routine, of reality was fiction.  I came to realize that I couldn’t count on my recall of even the past few days let alone weeks or months.  After spending a lot of time in denial of this, I finally admitted to my lack of reliable memory.  This realization came at about the same time that I decided that the only way for me to get better was to figure it out myself – a case study of one.  So I began, at first reluctantly, to write things down.  But as the data grew, day by day, into weeks and then months, it was hard to deny.  There it was on the page.  A life that I knew was a correct description but not one that I could have remembered on my own.

Writing it all down in a daily health record was the beginning of my return to health.  And also the end of my denial that my brain fog was a hindrance.  How does your brain fog affect your struggle with ME/CFS?  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


4 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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