...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Feeling Empty – Sleep Deprivation

10/30/2018

2 Comments

 
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I haven’t been sleeping well lately.  There’s a lot going on and I’m caught up in too much brain activity.  After several restless nights, of course I began to think about ME/CFS.
 
I remember when the exhaustion was so pervasive.  I had a mental flashback to the lowest days of my ME/CFS years when even holding a glass of water was beyond my strength and the brain fog was so thick that I couldn’t remember my thoughts for more then a moment or two.  It was long days of running on total empty.
 
It wasn’t until I understood the role that sleep deprivation was playing in my struggle with ME/CFS that I began to improve.  We dissected everything about my nights in order to improve my sleep – Comfort, light, sound, timing and medication.  We tweaked and tweaked.  When we finally got it right, I was getting about 6 hours of solid, uninterrupted sleep every night.
 
So yesterday I tweaked a few things in my current sleep environment and I finally slept for 7 hours last night.  Even my active brain couldn’t keep my body from finally getting some needed rest.  This morning I felt a little more energy and gratitude for the hard earned lessons of my past.

 
What’s the status of your sleep patterns and environment?  What needs tweaking?  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

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2 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
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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 Reality – Commit to Being A Patient

10/2/2018

2 Comments

 
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I recently received an e-mail from a someone 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?  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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