...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Rollercoaster – Vote for Change

11/6/2012

4 Comments

 
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I think that Americans are relieved to finally get to voting day.  No matter which party of change you support, tomorrow’s lack of election ads, phone calls and mailings will be the change that all of us welcome the most.  For me, it had gotten to the point that I couldn’t watch even an hour of TV.  The constant barrage of positive and negative ads was not only disconcerting, it felt like I was once again riding on the ME/CFS rollercoaster.  It reminded me of the positive highs and negative lows I rode when I was struggling with ME/CFS.  Up, down, up, down, up, down.

It wasn’t until I decided to change my approach to ME/CFS that my true recovery began.  And of course I didn’t arrive at this decision and then never go back to my old ways.  I allowed myself to have occasional slip ups which didn’t serve me well.  Eventually though I got with the protocol and stuck with it.  So deciding to change was the relatively easy part.  Staying the course and being patient with the progress was the true challenge.

So today, after you do your civic voting, do some personal voting about your struggle with ME/CFS.  Vote for changing your approach and for getting off the rollercoaster.  Then settle in to go the distance.  It is a challenge which will test your resolve but the potential reward is a steady path back to health.  Are you determined to permanently get off the ME/CFS rollercoaster?  What change in your treatment plan are you voting for today?  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
Lois d'Annunzio
11/8/2012 06:24:25 am

M.E. Crowdsourcing

Subject: Ditch the F word

Ever since this disease was put on the map in the mid 1980's, a single word has stood in the way if it being acknowledged as the serious and debilitating disease we all suffer from. That is, of course, the "F" word that has worked against use by trivializing the impact of the disease in the minds of virtually everyone who hears it.

While there have been several well-intentioned efforts to "rebrand" our disease (see links below), thus far none have presented an alternative that has gained any traction in either the medical establishment or among the general public. One reason for this is that not enough people are consistently using the same alternative to "chronic F...... syndrome" to describe this disease.

Imagine the impact if everyone suffering from this disease, and everyone affected by it,
agreed to a term widely used outside the U.S. That term is Myalgic Encephalomyelitis.* Rather than hoping that the medical community will hand down a better way of describing out illness, we have the power to bring about change from the bottom up. I invite you to join me in embracing Myalgic Encephalomyelitis as the new and improved alternative to the F word.

While we don't have much control over our disease, we certainly have the power to control what we call it. Join me today by adopting Myalgic Encephalomyelitis.

Fell free to cross post.

Lois d'Annunzio

* exception: disability claims & research grants

For brief history check out:
http://www.cfs-news.org/namebkgd.htm

For list of other name options
http://www.cfs-healing.info/name-change

Reply
Martha
11/8/2012 12:57:33 pm

I completely agree that 'fatigue' is a stigmatized word that only conveys the idea that this disease is not real. I have been using the acronym ME/CFS in order to create a link to the European name which I hope will stick. Thanks Lois!

Reply
Tim Boland
11/8/2012 03:52:21 pm

It is interesting that when we share what we are feeling with illness, many different perspectives are presented. After having been tested extensively, my rheumatologist - not my favorite person due to an insensitive bedside manner - said that my diagnosis of CFS/Fibro was a 'diagnosis of exclusion'. Essentially saying that this is what was left to choose from after a lot of testing, a kind of Sherlock Holmes diagnosis, but perhaps not as clever.

What I have learned is that my feelings from day to day, that is what I am feeling in my body, changes. Our health is not static, at least not for me. I was always disturbed by those who are not experiencing illness saying 'well you will have good days and you'll have bad days', which is meaningless. What I find is so similar to what you experienced Martha, that how well we observe what we are doing from day to day and then how we act upon those observations, makes a big difference. If I honor my sense of when I am becoming tired, irritable or not feeling my best, and rest, it makes a significant difference. If I don't, or stay up much too late, I feel it the next day.

I am doing far more than I was two years ago. This summer I drove to Idaho with a friend, and as he was unavailable to help me drive back, well I was quite worried. But I managed, I left before the coming snows, and did drive a bit too far the second day so next year, I'll just allow an extra day. And it is exhilarating to be able to drive myself, to do more for myself.

Reply
Martha
11/9/2012 01:17:18 am

I was introduced to the term 'wastebasket diagnosis' which is the same as your 'diagnosis of exclusion'. They run us thru the known list of tests and diagnoses and when nothing comes up positive, we're sent on our way with a compassionate 'you're just depressed' look. As I described in my book, it infuriated me. OK, Tim, now you've gotten me started. I'll take a deep breath and move on :)

When I first started to truly observe my patterns, it thought it would play out much like it does for a normal unhealthy person who is trying to get better. Good days and bad which eventually fade out and you recover and go back to your life. ME/CFS took an incredibly long time to play out for me. And that's where I almost blew it - several times. Congratulations Tim on your steady recovery and listening to your body!

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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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