...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Nutrition – Avoid the Negative

2/26/2013

4 Comments

 
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Often I’m asked what nutrition plan I followed when I was struggling with ME/CFS.  Honestly, it wasn’t so much what I ate.  It was what I DIDN’T eat.  I simply learned to avoid the negative foods that are a standard part of our American diet.  Of course none of this came about on day one.  It was over time that I began to recognize the need to give my immune system a fighting chance to get well by fueling it with healthy food and drinks.


I developed the habit of asking myself, “Will my immune system thank me for eating this?”  In the beginning, frequently, the answer was no.  I began to eat more foods that were rich in nutrients and which could build up the strength of my immune system and less of the foods that were full of empty calories and unpronounceable ingredient lists.

We have learned that some patients who are diagnosed with ME/CFS are actually suffering from severe food allergies.  And more and more people are restricting their diets by eliminating one or more common ingredients.  Organic, Gluten-free, refined sugar-free and other dietary restrictions are more common and the anecdotal evidence is showing that, for some, these dietary adjustments can generate a noticeable improvement in an individuals health.

For me, eating positive foods and avoiding the negative paid off.  How have you adjusted your eating habits?  What strategies are working for you?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha 

4 Comments

ME/CFS Hope – Paired with a Wellness Plan

2/19/2013

2 Comments

 
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© 2013 TSM
While I was in the depths of my struggle with ME/CFS, I had the opportunity to be seen in a Boston clinic where I thought they were familiar with ME/CFS.  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 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, I was an optimist by nature.  But ME/CFS 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?  What works for you?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

2 Comments

ME/CFS Routine – Each and Every Day After Day

2/12/2013

2 Comments

 
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© 2013 TSM
If I had to pick one word that would describe my successful return to health after struggling with ME/CFS, it would be monotonous.  Daily record, energy patterns and attitude are close seconds but ultimately the best word is monotonous.  Did I mention monotonous?  It was SO monotonous.  Day after day monotonous.  Are you starting to feel it?  Tedious, lacking in variety, repetitious, monotonous.  The same routine every day.  Monotonous day after monotonous day.

At the depths of my struggle, this monotonous routine required me to take a two hour nap twice a day.  Full disclosure – I HATE naps.  I haven’t napped since I was a toddler.  Even then, I am told I was uncooperative during nap time.  For whatever reason, unless I am sick or just come off an all nighter, I am not tired during the day.  Daytime bed rest is like jail for me.  So my monotonous routine required monotonous bed rest.  Even if I wasn’t sleeping, I had to be in bed with my eyes closed.  Yeah, monotonous. 
Sometimes it seemed to take an eternity to get to the end of a day.  And what was my reward?  Bed rest.  Monotonous bed rest.

And as my energy started to return, it was even MORE monotonous still following the napping and resting routine.  But it worked.  It all paid off.  So as you study your patterns and find the clues to your version of ME/CFS, find a way to manage the monotony of repetitious days.  How do you manage the monotony?  What are your strategies?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

2 Comments

ME/CFS Doctors – Recommendations?

2/5/2013

6 Comments

 
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© 2013 TSM
I’m frequently asked the name of the doctor who treated my when I was struggling with ME/CFS.  Unfortunately, like many ME/CFS patients, I was seen by three doctors before I finally connected with one who successfully worked with me to find a path back to wellness.  He is no longer in practice and is strictly a researcher – nutrition and disease.

But what I learned as I worked with him was that I needed to educate him as much as he needed to treat me.  Of course, I didn’t know this at the beginning.  It wasn’t until I began keeping my medical journal that I was able to see my patterns and then discuss them from a more objective viewpoint.  This gave him real information which he was able to translate into specific symptom patterns and
 appropriate treatments.  Over time we developed a partnership which worked and eventually paid off.

I was lucky to find a doctor who had previously seen a few patients who were labeled with ME/CFS.  But any doctor who is open to working with you and who is presented with real day-to-day data can help you unravel your version of ME/CFS.  Have you developed some successful strategies for working with your doctor?  Are you working with a doctor who you would recommend?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

6 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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