...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Reality – Commit to Being A Patient

8/19/2014

14 Comments

 
Picture© 2014 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.

I’ll be away next week so look for my next posting on Tuesday September 2nd.  And consider being part of the conversation.

Be Well Again,

Martha


14 Comments

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

8/12/2014

4 Comments

 
Picture
I was recently rearranging the furniture in my family room trying to improve the traffic flow.  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.  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


P.S.  Donna sent in this photo and comment via email:

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I let my body set the pace.


4 Comments

ME/CFS Depression – What Makes It Different?

8/5/2014

7 Comments

 
Picture© 2014 TSM
Donna’s comment about depression on the 3/25/14 blog – ‘ME/CFS Double Life – Two Identities’ – got me thinking.  Her comment was, “Recently, I read somewhere that the difference between ME/CFS and depression is that
ME/CFS sufferers can list many things that they would like to do if well enough,
but those that suffer with depression cannot.”  When I recently heard someone make a dismissive comment about a ME/CFS sufferer who was depressed, adding in air quotes around the word, Donna’s comment resurfaced in my mind.

Most people understand that depression is a real disease. And if it’s prolonged, there is often a physical cause for the imbalance that triggers and sustains it. 
But what is different when we compare the diagnosis of depression  with ME/CFS and depression?  On an NIH website I found a paper titled “A Systematic Review of Chronic Fatigue Syndrome: Don't Assume It's Depression.”  Here’s the link for the full text.  The following Table was attached to the article.  I found it enlightening and worth sharing.

 

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


Table 2.
Comparison Between Chronic Fatigue Syndrome (CFS) and Depression Across Different Studies
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7 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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