...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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SEID/CFS Attitude – Stilling the Voices

11/10/2015

4 Comments

 
Picture© 2015 TSM
Everyday SEID/CFS sufferers deal with choices:  The ‘energy envelope’ as it’s referred to nowadays.  The emphasis is placed on how much energy you have, what MUST you handle today and what can you postpone or just let go of altogether.  This approach refers almost exclusively to physical energy expenditure.
 
When I was sick, physical energy conservation was a primary concern for me.  But I came to realize over time that emotional and psychological energy were even more important.  Doesn’t make sense?  Here’s how it would go for me.
 
During the times when I was ‘resting’ and making well balanced decisions about my physical energy, my mind was still active.  Almost racing along despite the brain fog, I kept sifting through things mentally like a Virginia Woolf stream of consciousness passage on speed.  And despite my best efforts to be upbeat and positive about my situation and progress to date, I would eventually wander down the self questioning and negative path of doubt.  And then would come the damaging and harsh list of everything that I was failing at because of SEID/CFS.
 
For me, this was exhausting.  And debilitating.  So over time I learned to still my mind.  Beating myself up mentally wasn’t changing anything except eating up precious energy that I needed for the long haul.

 
So after you fend off the insensitive comments of others, how do you look upon yourself? Do you fester over your situation?  How do you still the negative voices?  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
Tim Boland
11/11/2015 02:41:21 am

Oh so true Martha. In the beginning of my struggle, I almost gave up at various points, and though it may sound a little out of tune with what you said, please stay with me. When I realized that I had this illness and that it may not just go away, as other illnesses have come and go, like a bad flu or a cold, there was a moment when I realized that this was something that might be with me for awhile.

It really took me some time to adjust to the idea of not being well, because it is so life altering. So many things which I just took for granted that I could do, I either had to do with much less energy expenditure or just put it off until later. It affected my self confidence deeply and I still struggle with that, though I am working to be more compassionate with myself. In the beginning I blamed myself, though at the time it didn’t feel like that. I kept wishing a magic dream would come true and I could somehow just return to a week or a month or a year before becoming ill, and armed with the knowledge of how to prevent it (and I could have), well I’d be able to change my future.

After hearing some deeply discouraging things from other people and some books, on my search I found your book on Defeating Chronic Fatigue Syndrome. I liked that it wasn’t that long, as my energy felt so low at first, and upon receiving it, I understood ‘this is a person who has really been ill and found a way through’. And I watched an uplifting and happy movie Mama Mia!, every day for a few weeks. It was a highlight, something I knew would be there whenever I wanted to watch it, something reliable that I knew would help me to feel better, if only for that two hours.

It is having some things to look forward to. Eventually I came to find YouTube and have made some marvelous friends there, and on another social site (a lot like the old YouTube format) called UploadSociety.com To find others out there, some also with health issues, some perhaps just looking for a friend, that’s been enormously helpful to me. Seeing your blog here each week, inviting me and others to participate. Something to look forward to, even little things, hopefully even one little thing a day, it makes such a difference for me.

And knowing from my own body that when I sleep well, stress is relatively low, I am better, I do feel better. It is the little triumphs that help pave the way.

Reply
Martha
11/11/2015 05:15:20 pm

I enjoy your heartfelt comments. And we are a community of people all struggling to get well and connect with others who are striving for the same. Thanks Tim!

Reply
jules
11/11/2015 03:40:06 am

My goodness,l so identify with these comments! Like reading my life history! Thanks for your great work,just confirms we are never too old to learn.

Reply
Martha
11/11/2015 05:18:55 pm

Our experiences are very similar in this struggle with SEID/CFS. But often, we are tentative to talk about it as we have all been on the receiving end of the stigma of SEID/CFS. And the learning curve continues. Thanks Jules!

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    Hello,  I'm
    Martha Kilcoyne

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    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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