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ME/CFS Gifts – Better Days

4/24/2018

3 Comments

 
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I live in New England where this winter has been weird – warm when it’s supposed to be cold then cold when we expect it to be warm.  I’ve had mixed feelings about it.  I love the coziness of a cold winter - but not the hassle of storms and hazardous travel.  I think most of us are done and ready for spring.
 
This week we’ve finally had some sunny warm days that reached above 60.  I went for a walk and felt all the usual stirrings of spring.  Of course, I knew that it wasn’t here to stay but the taste of it was enticing.  I remembered back to my ME/CFS years when after a period of intentional good behavior, doing everything I knew about how to get well, I had a really good day.  It was so enticing then to start my old life back – to forego all that I had learned in the hope that this was it.  It was a gift of one day that could reinforce all my intentions to stay the course or lure me into a false sense of full wellness.
 
Several times I was suckered in by the gift.  But after a few bad turns I got it.  By comparison it put so much in perspective.  So this is what it feels like to be better and feeling strong!  So just as I know that the 60 degree day is only a reminder of the spring to come, back then I had to avoid the pitfall of a wonderful gift of a better ME/CFS day.  Revel in its potential to be repeated more often and stay the course of pacing.

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How have you reacted to these gifted days?  Please COMMENT 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

3 Comments

ME/CFS Attitude – What Others Say

4/17/2018

0 Comments

 
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When you’re struggling with ME/CFS, it can be a daily challenge to keep your own negative attitudes in check.  It’s all too easy to fall into the trap of wasting precious energy grinding about the things you can’t do, the thoughts you can’t keep straight and the important people in your life for whom you can’t be present.
 
It becomes even more challenging when you have to deal with the negative attitudes and insensitive comments of others.  One group says ‘you look OK to me’.  Then there are the ‘doubters’ who look at you as if you’re either physically lazy or mentally weak.  And then you face the curious crowd who seem interested in your illness only to the extent that they want to tell you about themselves or their sick friend.  It’s hard to know what to say without being irritated (only to confirm their assessment of your mental weakness) or rude which can alienate people whom you otherwise value in your life.
 
Fortunately for most, there are a few steadfast supporters, family members or friends, who get it and want to support your path back to health in whatever way they can.  And even these caring people can say the most insensitive things at times.  When I heard these comments, I donned my writer’s thick skin which I acquired as the result of many tough critiques.

 
What do you say when people make insensitive comments?  Do you react at all?  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


0 Comments

ME/CFS Recovery – A Mine Field of Variables

4/10/2018

2 Comments

 
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If everyone who was suffering with ME/CFS were to write down all of the variables that affect them, it would be a long list.  Life in general challenges us but add to that all of the knowns and unknowns of ME/CFS and it can be overwhelming.  During the time when I was bedridden with ME/CFS, I must admit that for a good number of my waking hours each day, I cranked over that list.  I allowed it to feed on the precious little energy that I had and erode my will to get well.
 
It was when I finally jettisoned the list and began to focus on one or two variables at a time that my health started to improve.  Instead of wandering through the entire mine field where it was certain that one of them would blow up, I carved out smaller areas with a limited scope.  Usually this would include a shorter timeframe to focus on and only a couple of life’s issues to act on.  It didn’t always work but most of the time, it allowed me to intentionally focus the energy I had on things that were realistically within my reach. 

 
How do you keep yourself within a realistic window?  What strategies have worked for you?  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 Optimism – Brighter Days

4/3/2018

2 Comments

 
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It happens to me every year around the end of March.  Although I don’t see the signs of change in myself yet, one of my window plants catches my notice.  There’s a new vibrancy in its color or maybe even a tiny sprout where a dead leaf had dropped.  Something triggers my attentiveness and before I’ve cognitively made the connection, I’m trimming, repotting and fertilizing all my plants.
 
What my plants have all been responding to, and what I’m also caught up in, are the longer days with brighter light streaming in my windows.  And I think back to my ME/CFS days and remember how hard it was day after day, week after week and month after month to keep my spirits up.  To remember my resolve to keep to the protocol, to allow myself the space to heal, and most importantly to cut myself the mental slack I needed.  The only time I didn’t need to be intentional about being upbeat was when the light began to get noticeably brighter at this time of year.  There’s a reaction to the increasing daylight that we experience on a cellular level.  I’m sure there are reams of scientific studies that have investigated this response but I don’t need to read them.  My sense of renewal and optimism are palpable.  And during my ME/CFS struggle, it was natural to see this NOT as the marking of another year of this cruel illness, but as the beginning of the year when my progress would get me to the next health plateau – the next stage of recovery.

 
I’m hoping that you are able to harness this brighter light and natural source of anticipation to carry you successfully along your path back to wellness.  Please COMMENT 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!
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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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