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

2/24/2015

4 Comments

 
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A while back, a friend recommended that I read Amy Chua’s Battle Hymn of the Tiger Mother.  Shortly after, an item on the internet about the book caught my eye.  There appeared to be some controversy about the book – a true story.  Strong opinions were voiced for and against the mom (author of the book).  Now this definitely had my attention.  I decided to pick up a copy.

I’d only read forty or so pages and I understood why people took issue with the mothers parenting style.  She was driven to have her children excel at school and music to the exclusion of everything else.  She was relentless about studies and practicing.  A therapist would probably label her as obsessive.  Many readers thought she was cruel.

If I had never had SEID/CFS, I might have been in the cruel camp.  And I definitely question such extreme rigidity with children.  But honestly, I understood the mother and her motivation.  She set a goal for her children that she was determined to reach.  OK, it wasn’t her own goal and she seemed to act like a bully at times.  But what I identified with was the determination, the attitude to stick with the plan always keeping the goal in mind.  Not being derailed by everyday distractions.  For her, if it didn’t fit into the long term plan, it was not allowed.

After two years of riding the cruel SEID/CFS rollercoaster, I finally decided that what I had been doing wasn’t working.  I needed a new approach.  From that day forward, I was like the tiger mother.  I was highly motivated to get my health back.  I was determined, focused and had the capacity for regimentation.  If it wasn’t part of the plan, it was out.  No more crappy food.  No more activities that sent me into relapses.  No more cheating on sleep and rest.  No more isolation – I asked for help.  No more fuzzy recall – I kept records.  No more fretting about what other people thought of me – I accepted my situation and didn’t beat myself up about it.  I focused on the goal of getting my health back.

So if you’re suffering with SEID/CFS, what is your goal?  What are you doing to reach it?  Are you consistent and steadfast?  Are you a tiger about getting well again?  Please COMMENT 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

SEID/CFS Pacing – We Totally Get It

2/17/2015

4 Comments

 
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No matter where you live, you are probably aware that New England has been dealing with a conga line of winter blizzards which have dumped over 6 feet of snow on us, and still counting.  It has been a record breaking month or so.  Even the most ‘winter loving’ people around me have had it.  Several churches have put on their marquees, “Whoever is Praying for Snow Please Stop!”  And of course all of this got me thinking about my struggle with SEID/CFS.

Like many, the depths of my illness dragged on for about two years.  And like many more, it still drags on.  We know what it takes to be in something for the long haul.  To commit to getting better as a lifestyle however limited.  And yes, some of us needed multiple remedial roller coaster rides of push crash cycles – I’m at the front of that line.  But we totally get the patience and pacing it takes to reach a goal – for us wellness.  And we keep at it, day after day, week after week, month after month and year after year.  We are determined to be well again.

This understanding doesn’t entitle me to look down my nose at those around me who are done with winter.  But honestly, I do a little – just a smidge.  Yes, I have shoveled and shoveled and shoveled.  And I’ll probably keep shoveling until spring arrives whenever that will be.  But I am not complaining.  This is a piece of cake – made of snow - compared to struggling with SEID/CFS.

Whenever someone groans about the snow, I listen for a while then smile and say, “Keep Calm and Shovel On”.  Please COMMENT 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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4 Comments

ME/CFS Gets New Name – Official Recognition

2/10/2015

8 Comments

 
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From time to time, ME/CFS has been discussed in the mainstream media.  Usually there’s a flurry of reporting, an interview or two, maybe even a national nightly news segment and then a lot of silence.  We could be in for a repeat of the past but maybe not this time.

The Institute of Medicine – at the request of an impressive number of Federal agencies including the Department of Health and Human Services, NIH, the Agency for Healthcare Research and Quality, the CDC, the FDA and the Social Security Administration -  has convened an expert committee to examine the evidence base for ME/CFS.  Their conclusion?  ME/CFS is a real physical disease.  Should we applaud or just do an en masse exaggerated eye roll?

To their credit, they have determined that physicians should be taking ME/CFS seriously and that a new designated diagnosis is required to separate ME/CFS from its former reputation as an imaginary or psychological illness.  The new name is Systemic Exertion Intolerance Disease (SEID).  OK it doesn’t exactly roll off your tongue but it is a disease not a syndrome.  Score one for us.


Here is a link to the official report   http://www.iom.edu/Reports/2015/ME-CFS.aspx

Here is a link to a report on NBC’s website   http://www.today.com/health/chronic-fatigue-syndrome-real-dont-call-it-panel-says-2D80484902

So what does this mean for those who are suffering with SEID?  Maybe this could be the beginning of serious dollars being dedicated for research.  Maybe some treatment protocols will be developed that have some basis in actual case histories.  And just maybe patients who are suffering with SEID will be greeted by physicians with understanding and a commitment to get them well again without referring them to a psychiatrist.  Please COMMENT 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


8 Comments

ME/CFS Recovery Opinions – Some More Hopeful Than Others

2/3/2015

2 Comments

 
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ME/CFS patients seem to be firmly in either the ‘can’ or ‘can’t’ recover camps.  As one might guess, most of the opinions can to be related to whether or not each has been able to recover.  And then there are the rest, fence sitters who are hopeful and want recovery to be possible. 

For me, I keep coming back to what I feel is so unfair about this ME/CFS diagnosis.  The fact the even though thousands of patients get this label, they actually don’t all have the same disease.  So using the same protocol and approach, two patients can have completely different outcomes.  Or one has great success and the other minimal improvement.  Yes, I believe that ME/CFS patients can recover.  Can they all recover using the same treatment?  No.  Can they recover using the same strategies?  Call me crazy but my answer is yes.

My training as a health professional drilled into me two things:  first, despite all the marvelous progress that medicine had made over the last century, we still only know and understand a small portion of the intricacies of the human body.  Second, the way that we learn things is to collect data, hypothesize, test, evaluate and then collect more data, etc.


Personal data collection (yes, I keep harping on this) and successful strategies seem to be the way out for many.  Have you developed any strategies that work for you?  Please COMMENT 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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