...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS/SEID Struggle – Work Every Hour

6/28/2016

2 Comments

 
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Full disclosure – I have been a Boston Red Sox fan since I was a little girl.  I have no idea why the game captured my imagination so young but I got hooked and still am.  Like many of the devout, I am used to the highs and lows of my team.  Right now, we’re doing well.  And of course I’ve been watching the post-game interviews.  Without exception the players repeat the same mantra – work every pitch.  They remind me of my struggle with ME/CFS/SEID and how I was able to regain my full health.

Like the Red Sox who have approached this entire season with focus on “Every pitch, every out, every inning, every game”, I finally understood after two years of crazy push/crash cycles that I needed to bring my struggle with ME/CFS/SEID to “Every hour, every day, every week, every month.”  If I intended to be well again, I needed focus – consistent, every hour focus.
I needed to bring my struggle into the moment and make it the most important factor that effected each decision – everything had to be viewed through the window of my goal to regain my health.  And yes, I was blessed with the opportunity to make ME/CFS/SEID my focus every hour.  But it was not without deep sacrifices for me and for my loved ones.  This path is hard and long.  Some days seemed endless.  Some days I lost ground and some days I gained.

And like the Red Sox who went from last to first in one year with pitch by pitch focus, I regained my health in two years with hour by hour focus.  How are you bringing your struggle with ME/CFS/SEID into each hour of each day?  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.  And Guest Blogs are most welcome!

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

Be Well Again,
Martha
Go Sox!

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ME/CFS/SEID Treatment – Working with a Provider

6/21/2016

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Picture© 2016 TSM

By the time most of us received our ME/CFS/SEID diagnosis, we had seen several practitioners hoping to find answers as to why we couldn’t regain our strength and energy.  Batteries of tests later, we still had no answers.  So we were labeled with ME/CFS/Fibro or whatever it’s called in your region.  For most of us, this pronouncement was accompanied by a complete lack of a treatment plan.
 
So we are left struggling with a chronic condition whose symptoms includ
e pain, complete fatigue, brain fog and the inability to get restful sleep.  From this place of low functioning, if at all, we have no answers and no solid treatment plan.  And I don’t consider ‘rest and you’ll feel better’ a treatment plan.
 
What to do?  I flailed around for quite awhile before I started keeping a daily record.  But once I started, I began to have specifics that I could document and discuss with my provider.  Instead of looking for him to provide me with answers to my illness, I provided him with solid data about my patterns and symptoms.  Full disclosure, he never seemed to care much about my energy patterns.  But he liked seeing symptoms that he could directly treat.  And he loved getting feedback via follow up data to determine if the treatment had any effect.  So I learned to work with him as a partner.  It was a completely different relationship than I was used to but it worked for ME/CFS/SEID.
 
Do you have a provider that you’re working with?  How do you successfully partner with him/her?  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 Self-Care – Knowing Our Limits

6/14/2016

4 Comments

 
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Lately I’ve been thinking a lot about self-care.  And it got me thinking about what we know about our limits and what we do for others knowing that we will exceed those limits.  Our wish to please the people we care about and to do for them somehow overrides all we’ve learned about self-care and especially everything we know about recovery from ME/CFS/SEID.

I was reminded of a book I first read in my twenties when I was babysitting - “The Giving Tree” by Shel Silverstein.  Maybe you’re familiar with it.  On first reading, I thought it was a lovely story about love and what a parent will give selflessly to a child.  At the time I saw it from the viewpoint of a child thinking about my mother and her love for me.  The next time I read the book, I was a parent myself and I was reading to my child.  My fond memory of the book was dashed as I turned each page and read how the main character, a tree, gave and gave and gave to ‘the boy’ until she was nothing but a lifeless stump.  And even then, she still gave by letting the now aged boy sit on her.

Healthy people often struggle with self-care choices.  As ME/CFS/SEID patients we make daily decisions about self-care – energy levels, rest needs, symptom management and recovery protocols.  And despite all we have learned, we somehow ‘decide’ to push ourselves too far for our loved ones.  Who are we fooling?  How do we keep within our limits?  How do we communicate honestly with our loved ones?  How do we show our love without suffering a set back?  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

4 Comments

ME/CFS/SEID Recovery – Challenge and Reward

6/7/2016

2 Comments

 
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I’ve been enjoying one of the rewards I earned by facing the challenge of ME/CFS/SEID head on and figuring out my version of this cruel disease. I’ve been taking on large garden projects which require digging, hauling and mulching.  And I’ve been able to handle the physical work as any healthy person would do.  And of course, I’ve thought about my struggle with ME/CFS/SEID each and every day - more than once.

My gratitude for being fully recovered is immeasurable.  And yes, I was fortunate enough to have the benefit of a strong daily support group.  I had the time to devote to figuring out my version.  I had the economic safety net.  But most of all, I had patience and a focused priority to get well above all else.

For several years, I did nothing but follow the protocol – every minute, every hour, every day, every month till I was sick of it.  Till I hated it.  Till I wanted to ignore everything that I had learned and just get back into my life.  I was sick of watching others live.  I was sick of not being who I could be.  I was sick of the comments of others.  But I fought every normal urge and just kept plugging away at the protocol.  Did I ever cheat?  In the beginning, of course I did.  But it only got me sicker.  So when I finally got serious, I stuck with the protocol relentlessly.  And that’s when recovery began to slowly happen.

Yesterday, I planted two new rose bushes.  I was a sweaty mess covered with a layer of dirt and I was thinking about how this seemed like a miracle.  But it wasn’t.  It was the result of lots of sacrifice that on a daily basis I truly hated.  But in the long run, it was SO worth it.  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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