...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Perspective – Your Consent

11/13/2018

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I’ve been lucky to have many teachers and mentors in my life.  They’ve come from traditional as well as nontraditional paths.  One of my favorites is Eleanor Roosevelt.  Recently, I overheard a parent dumping a load of verbal judgment on his child and I started thinking about her famous quote, “No one can make you feel inferior without your consent.”  And I was remembering how hard it was when I was struggling with ME/CFS, to ignore the judgmental comments I received about my ‘weakness’.  That somehow I was at fault for being sick - I was choosing to be sick.  And that the reason for my continued illness was a lack of will or just plain laziness.  I remembered how much that hurt being flung at a ‘work till you drop’ Type A personality like me.
 
When I finally understood that the path back to health needed to be a case study of one, it freed me from the burden of the ‘holier than thou’ judgments.  But it took conscious effort to ignore – to not give my consent for others to label me as inferior.
 
Another quote of Eleanor’s helped me through that time as well.  “Do one thing everyday that scares you.”  It took a great deal of courage to let go of so much in order to focus on getting well again.

 
How do you deal with the attitude of those who look at you and see weakness?  Or even laziness?  What are your strategies for withholding your consent?  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 Self Care – Be Sick Be a Patient

11/15/2016

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My daughter recently had surgery and needed help when she was back home.  I had all I could do to convince her that I was going to take care of her.  She finally relented and started being a patient.  Of course, it reminded me of myself when I was struggling with ME/CFS/SEID.  For a long time, I fretted over the things that I wasn’t getting done, how I wasn’t contributing, how much of a slacker I was in taking care of my loved ones and my life.
 
When you’re struggling with a disease as cruel as ME/CFS/SEID, the coulda shoulda wouldas can weigh heavily on your mind.  You look like you’re ok.  Some days, for a while, you might actually feel like you’re ok.  And for the most part, the people around you don’t get what you’re going through.  So your tendency is to be inconsistent in your self care.  You crash when you have to.  You push when you think you can get away with it.  And you spend many days in between trying to squeeze as much as you can out of yourself.  And what does that get you? - Chronic ME/CFS/SEID.
 
It took me a long time to allow myself to be sick and to be a patient.  And even after I knew I needed to make self care my top priority, I still stumbled and struggled to justify what at times seemed to be so selfish.  But after I finally stayed true to being a patient, I began to regain my health in a significant way.

 
How do you stay true to managing your self care?  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 Personalities – The Research

5/24/2016

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The question is often raised about personalities and ME/CFS/SEID.  Do we have traits in common that are part of the ‘syndrome’?  We’ve all heard that ME/CFS/SEID patients are usually Type A personalities defined as competitive, impatient, driven and stressed.  For many, the anecdotal evidence supports this association.  I’m a classic example of a Type A.  And you’ll find blogs, articles and endless fodder on the internet attesting to this viewpoint.  But does the research support such a link?

I found three studies that examined the personalities of ME/CFS/SEID patients – let us know if you have found others.

The first, “Personality and Perfectionism in CFS” confirms a personality link.  http://www.tandfonline.com/doi/abs/10.1080/08870440802403863#.U02NwtfD-po

The second, “Chronic Fatigue Syndrome and DSM-IV Personality Disorders” concludes that there is no link.   http://www.ncbi.nlm.nih.gov/pubmed/19073288

The third, “Personality Features and Personality Disorders in CFS”, offers a ‘maybe or maybe not’ association.   http://www.ncbi.nlm.nih.gov/pubmed/20664306

Not addressing the flaws in the research, that’s a solid ‘don’t know’.  As ME/CFS/SEID patients, we’ve gotten used to the ‘don’t know’ territory.  Our diagnosis is a question mark.  The causality is a question mark.  The treatment is a question mark.  And, of course, our personality’s part in contributing to our dis-ease is a question mark.  Status Quo.

But hard data or not, for me, the path to recovery required that I change my personality.  Being a type A and recovering from ME/CFS/SEID didn’t mix.  I had to not only slow down my body, I had to slow down my psyche.  This required focused retraining.  How are you dealing with personality and your struggle with ME/CFS/SEID?  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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