...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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Thankfulness – Sometimes Hard to Find

11/29/2011

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© 2011 TSM
Thanksgiving traditionally generates clichés about thankfulness.  The mantra basically goes like this:  Be thankful for what you DO have, not what is missing.  Most of us would agree with this outlook.  It is better to focus on the positive.  But it isn’t easy to do especially when you’ve been struggling with ME/CFS for a year or for 20 years.

When I was sick, I would allow myself to indulge in some self pity around this time of year but I knew that was totally unproductive and a waste of what little energy I had.  I would then get irritated with myself for my self-centered attitude and so just added more negativity to my load.  But it can be unfair to expect a person who is struggling with a body that can’t handle normal activity to be upbeat, positive and ultimately thankful.

So as the rest of the world around me went about their daily routines, I would look at my life and try to find something to be thankful for.  Mostly, I focused on the few people around me who understood what I was going through and supported me in large and small ways.  I made a point to tell them how much I appreciated what they did.

And after I let go of the negativity toward myself, I realized that I needed to appreciate the work I did all year long.  The work of getting well again.  Sticking to the snails pace recovery, following the protocol when I didn’t want to and being present in my life in whatever way I could realistically handle.

How are you handling thankfulness?  Are you finding things to be thankful for?  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

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Funding for Research – Vote Today and Tomorrow

11/21/2011

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© 2011 TSM
When I was sick with ME/CFS, funding for research was non-existent.  The medical and scientific communities were in denial about ME/CFS being a real disease. Today, there are many research teams following credible leads that may result in successful treatments and possibly cures for some of us in the ME/CFS wastebasket.  Yes, it’s a small fraction of the funds that other diseases receive for research but it’s better than it was.

Chase Community Giving is currently running a contest to determine how they will award up to 3 million dollars to non-profits.  They are asking for people to vote for their favorites.  The voting ends on November 22nd – Tomorrow.  Several ME/CFS organizations are competitive.  Each person gets 10 votes so you can load them up on ME/CFS groups.

Here’s a link to check out Chase Community Giving’s Facebook page. 
http://apps.facebook.com/chasecommunitygiving/?ref=ts

Here’s a link for who and how to vote for the ME/CFS groups that are participating.
http://www.facebook.com/notes/xmrv-global-action/how-to-vote-in-the-chase-community-giving-contest/10150398918266797

As of now, The New Jersey CFS Association (http://www.njcfsa.org/) and The Enterovirus Foundation (http://enterovirusfoundation.org/) are in the running.

Please login to Facebook and help to get some funding for ME/CFS research and support groups.  A small grant can make or break these non-profits.  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

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Perspective – Is Our Health Memory Accurate?

11/15/2011

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© 2011 TSM
Recently I spent some time with an elderly aunt in her 80’s.  As I watched her slowly move around with the support of her cane, struggle to see clearly and wrestle with recalling conversations, I was thinking about the slow unraveling of health that we face as we age.  And I clearly recalled the similar frustrations that I felt with my low level of functioning when I was sick with ME/CFS.  As it was with me, and I would image would be true of most, my memory of what it felt like to be fully healthy was compromised.  I had been ill with all the fatigue, pain and brain fog for so long that I no longer had an accurate recall of what it felt like for me when I was able to fully function in my old busy life.

And it was also true of my aunt that she had adjusted her memory of what it felt like to be healthy to accommodate her declining functionality.  She would say that she ‘felt well’ even though we could observe this to be inaccurate.

As I gradually began to recover from ME/CFS, I would report to those who asked that I was feeling healthy again.  Then a month would pass and I would have to say to the same person that I had been wrong.  Now I was feeling even better and was healthy again.  Honestly, this uptick in health went on for about six months.  It wasn’t until I was fully well again that I remembered what it was truly like to feel strong and ‘healthy’.

By definition, for ME/CFS patients, the chronic nature of the disease adds to the possibility that we will remember an inaccurate perception of what it feels like to be fully healthy.  How long have you been struggling with ME/CFS?  Do you think your memory of how it feels to be fully healthy is accurate?  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

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Immune Support – Who Do We Listen To?

11/8/2011

1 Comment

 
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© 2011 TSM
Most ME/CFS patients would agree that supporting our immune system is key to a successful path back to health.  We recognize that this system is a 24/7 work horse that never rests.  The majority of challenges to our person health that we encounter are never known to us due to the vigilance and vigor of our efficient immune systems.  And some researchers support the theory that part of the ME/CFS struggle is due to a compromised or ‘on tilt’ immune system.

So what should ME/CFS patients do to support our immune systems?  From my perspective, it’s hard to find definitive information unless it’s followed by an ad for the recommended product.  At one extreme are the recognized research groups who won’t commit to anything specific.  At the other extreme are the passionate semi-scientific articles extolling the virtues of a ‘total solution’ product.  ME/CFS patients find it difficult to sift thru all of this when so much is at stake and brain fog is dulling one’s judgments.

Here’s a link to an article from Harvard Medical School “How to Boost Your Immune System.”  It’s couched but ultimately informative.  And it gets us into the supplement discussion again. For me, eating healthy food loaded with nutrients and getting REM sleep were the highest priority in my efforts to support my immune system as I was working to defeat CFS.

What are your strategies?  Have you found a combination of things that add up to a healthier immune system?  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

1 Comment

No Power – CFS Patients Get It

11/1/2011

2 Comments

 
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© 2011 TSM
Two months ago Hurricane Irene knocked out our power for five days.  This week it was a heavy, Fall snow storm that put us in the dark for three days.  We just got our power back Tuesday evening and we’ve been busy since then getting our household and our lives back to normalcy.

During the outage, I was thinking about how we often take for granted the watts that invisibly supply the energy we have come to depend on to power our lights, heat, refrigeration and cooking.  We don’t really think about the mechanics of how it’s produced, delivered and consumed.  It reminded me of how I lived before I was sick with ME/CFS.  I gave little thought to how my body generated energy, delivered it to my cells and how I, at times, recklessly consumed it as if there was no limit.  My type A personality was go, go, go even when I had colds or the flu.  That changed abruptly when I came down with CFS.

Now that I am well, my first thoughts are still focused on whether or not I have the energy to take on what has been set before me.  Sometimes it’s a choice.  Often it’s a responsibility.  And I am cautious to evaluate what I can handle and under what conditions I can do it.  I’m especially clued into looking for partners to help get something done.  I had learned the hard way when I was recovering from CFS that the final task of simply carrying the heavy bags into the kitchen from the car and putting the food away could be the tipping point that turned an otherwise successful trip to the grocery store into a CFS setback.

What have you learned about your ‘energy envelope’?  How do you keep your urge to go, go, go in check?  What strategies have you developed?  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
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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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