...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS/SEID Choices - Lives that are Unhealthy

8/23/2016

4 Comments

 
Picture© 2016 TSM
I’ve been thinking about ME/CFS/SEID and how the strategy I used to get well was to carefully examine all my illness patterns.  I documented them and looked for clues. Then I adjusted my patterns and so on until slowly over a long period of time I began to feel well again.  During that process I observed in myself patterns that not only didn’t serve we well as a person trying to recover from ME/CFS/SEID, these patterns were damaging for a healthy person.
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Anyone struggling with ME/CFS/SEID becomes acutely aware of the health they once had and lost.  For many of us, myself included, that good health had been taken for granted.  When I think of the ways I had pushed myself physically, I wonder how my body was able to tolerate it as long as it did.  I was clearly vulnerable when I contracted ME/CFS/SEID.
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This cruel disease is challenging enough to unravel but then we also need to decide what kind of life we want when we are finally well again.  "I want my life back", is frequently lamented.  So what kind of life do we want back?  I decided that I didn’t want the stressful, physically demanding life that I had before.  And I wanted to take better care of my healthy self than I had been.  My old eating and self-care habits were awful.  So as I began to recover, I decided to make many of my new healthier habits part of the lifestyle I would continue to follow when I returned to full health.


So don’t wait.  Start making choices now that you want to carry with you into your new healthier life when you have recovered from ME/CFS/SEID.  It will help you now as you return to full health and it will help you to stay healthy.  What positive health habits are you planning to incorporate into your healthy 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 my next posting on the Tuesday after Labor Day.  Add consider being part of the conversation.

Be Well Again,
Martha

4 Comments

ME/CFS/SEID Recovery – It Takes Some Dedicated Time

8/9/2016

2 Comments

 
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Every once in a while, I drag out my soap box….  Here I go….

I frequently receive emails from people who have been struggling with ME/CFS/SEID for way too long.  This is such a cruel disease.  And I know that everyone’s situation is different with demands and responsibilities.  But recovery from ME/CFS/SEID, at least for me, came at a price.   A very high price.   I literally gave up two years of my life in order to recover.  And, as you already know, I hated every minute of it up until I started to taste how it used to feel to be well.  And when I got that taste, I had hope that I could recover.  Full disclose:  I had to repeat that ‘first taste’ experience three times before I fully understood what I needed to do next which was nothing.

I needed to stick with the protocol and rest.  I needed to stay right where I was and continue to do all the self-care that has gotten me that far.  And that’s when I truly began to hate the protocol.  As I felt better and better, I continued with the restrictive protocol.  Ad nauseam.


So here are my questions to you.  How long have you been struggling with ME/CFS/SEID?  What quality of life are you living?  Is there any way that you could arrange your life so you could dedicate one year to only being a Patient?  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 Diagnosis – It Requires a Case Study of One

8/2/2016

3 Comments

 
Picture© 2016 TSM
We all know that ME/CFS/SEID is a wastebasket diagnosis.  Essentially, we are tested for every possible known disease that we might have until all tests are negative and there are no more tests to try.  Although we all share a common group of symptoms, there are no definitive indicators that we actually have the same causative disease.  As most people believe, there are many diseases currently grouped as one under the ME/CFS/SEID umbrella diagnosis.  For me, the healing actually began when I finally accepted the lack of specificity of my ME/CFS/SEID diagnosis and started to solve the puzzle of my own version of ME/CFS/SEID.

Along the way I was diagnosed by many well meaning and somewhat helpful family and friends and also by more negative people most of whom labeled me with all kinds of diseases and determined, whether they had met me or not, that I didn’t really have ME/CFS/SEID.  They decided that I actually had ‘fill in the blank’ flavor of choice.  I don’t think this was a unique experience for me.  I would guess that most patients who get the ME/CFS/SEID diagnosis have to deal with some judgmental ‘know it all’s. 

If you’re not already on the ‘case study of one’ track, I encourage you to start.  This means keeping a daily health record with times, activities, symptoms, treatments, nutrition, etc.  The time is well spent as you begin to see, after a period of time, a true picture of your real disease ebb and flo - not marred by ME/CFS/SEID brain fog.  Are you keeping a daily health record?  How are you tracking your specific version of 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

3 Comments
    Picture
    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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