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ME/CFS/SEID Hope – Paired with a Wellness Plan

10/25/2016

2 Comments

 
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While I was in the depths of my struggle with ME/CFS/SEID, I had the opportunity to be seen in a Boston clinic where I thought they were familiar with ME/CFS/SEID.  Eventually I did find a doctor there who successfully worked with me.  But the first doctor I saw there, after my complete lab work up and physical exam, was truly unhelpful.  He told me that there was nothing physically wrong with me and that I should go home and “have hope”.  At that moment, he was the recipient of all the rage about having ME/CFS/SEID that was pent up inside me.  His eyebrows may still be singed.
 
When I finally started working with a doctor and treating myself like a case study of one, I began to see slow but real progress.  It was then that I opened up to a collaboration of hope paired with a wellness plan.  As I worked through my physical illness and worked with my daily patterns, I also began to work on my attitude.  Prior to ME/CFS/SEID, I was an optimist by nature.  But ME/CFS/SEID had tainted my outlook.  It was beyond frustrating to be struggling with a physical illness that almost no one understood or even acknowledged to be real.  So I began an intentional effort to raise my spirits and have some hope for recovery.  As I look back now, this was only possible because I was beginning to see glimmers of physical progress and I had determined to devote my immediate future to being well again.

 
So hope without a focused effort to be physically well is equally as ineffective as a wellness plan without hope.  For me, they needed to be paired.  How do you balance your physical recovery plan with your outlook?  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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ME/CFS/SEID Choices – What would you Decide?

10/18/2016

4 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/SEID and what I’m doing with my hard won, regained wellness.

Once I knew that ME/CFS/SEID 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

4 Comments

ME/CFS/SEID Memory – Write It Down

10/11/2016

2 Comments

 
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As I age, my memory seems to fail me at unexpected times.  I can’t recall the name of a flower that I’ve know for a decade or the name of a street that I’ve driven a thousand times.  Recently, I couldn’t remember the name of a friend’s daughter and I wrestled with my memory to pull it up as I stood there with a blank look on my face.  And of course it reminded me of the brain fog I experienced daily when I struggled with ME/CFS/SEID.
 
During my ME/CFS/SEID days, I would be in conversation and the entire topic and my thoughts would slip away into an awkward silence.  Trying to pay bills or add up simple numbers was painstaking.  But most of all, I would loose track of entire days or weeks.  I couldn’t recall the simplest timelines.  And I struggled to get any sense of progress until I made the commitment to write it down.
 
Ok, I admit to having a mantra about keeping a Daily Record.  And it stems from the realization that it was my daily record that over time gave me the clues to My Version of ME/CFS/SEID.  I encourage everyone who is struggling with this cruel disease to faithfully keep a record of sleep, activities, rest periods, food and medications during the course of each day and night.  It takes about five minutes a day to write it down in a simple, easy-to-review format.

 
What kind of record do you keep?  What information has proven invaluable?  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 Feeling Empty – Sleep Deprivation

10/4/2016

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/SEID.
 
I remember when the exhaustion was so pervasive.  I had a mental flashback to the lowest days of my ME/CFS/SEID 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/SEID 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 a great deal of gratitude that ME/CFS/SEID is a nightmare from 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

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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