...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Out of Power – Patients Get It

6/24/2014

2 Comments

 
Picture© 2014 TSM
We recently lost our power for two days and it took a while to get things back to normal after the power was restored.  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 ME/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 ME/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 ME/CFS setback.

What have you learned about your ‘energy envelope’?  How do you keep your urge to go, go, go in check?  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 Opposite Viewpoints – It’s a Wide Waste Basket

6/10/2014

5 Comments

 
Picture© 2014 TSM
I recently received two diametrically opposed e-mails on the same day.  Both were written from the heart and came from caring, passionate people who have been dealing with ME/CFS for way too long.

The first was from a patient who has been sick for decades.  Yes, decades.  I can’t even imagine where or how I would be after dealing with ME/CFS that long…  She related her steadfast struggle to regain her health trying every promising treatment from the reasonable to the absurd.  At this point, she is
managing to live a somewhat productive but restricted life with push/crash
cycles and wrote to express her objection to my viewpoint that “you don’t have
to live with it”.  Personally, she has never met anyone who has recovered and feels that it is cruel of me to mislead patients into thinking that they can recover. 
I heard her frustration.

The second was from a former patient who was inspired by my book.  Yes, former.  Like me she had been sick for about four years and like the first patient above, also had worked steadfastly to regain her health and recover from ME/CFS.  Now healthy, she was feeling the desire to “give back” to the CFS community and talk about her recovery.  But she was disheartened by the number of ‘lifer’ blogs and forums on the internet where patients were insistent about the incurable nature of ME/CFS and found the negativity to be a turnoff.  I heard her frustration too.

Both of these viewpoints, and all the perspectives in between, need to be expressed and heard. I’m hopeful that we can be part of that conversation and in the process contribute to some positive outcomes. What’s your take on recovery from ME/CFS?  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

5 Comments

ME/CFS Guest Blog – Tim Boland

6/3/2014

3 Comments

 
Picture© 2014 TSM
Martha’s blog last week, “Recovery – Challenge and Reward”, got me fired up!  It reminded me of the very difficult journey she had undertaken to get 'back on her feet'.

Have you ever noticed how sometimes when we are in a certain place emotionally, something will appear - a song, an article?  I read recently
in a major newspaper article about the level of burnout among the employed in
America - long hours, and often sadly too little appreciation or respect.   An interesting part is that those companies who do show more respect and appreciation toward their employees, tend to be far more successful companies in the long run, and employ healthier people who enjoy going to work and contributing. 

Then I watched an interview on a “Back the Future” DVD with Michael J. Fox, who as many know, developed Parkinson's.  I was surprised when, as a young and clearly very energetic and healthy Michael, he spoke about having to do that movie while also filming the TV show “Family Ties.”   Basically he was working two jobs and was getting very little sleep.  He did love it but some asked him at the time, 'How do you do it?'

I feel after having experienced CFS first hand that mine came about in large part by not paying enough attention to my own needs.  I should have respected what I needed for self care rather than fearing to offend others by not doing what was expected of me, plus years of stress in business and in my personal life.
 
Our bodies are vulnerable, as shown in our cases with CFS and other illness, just as Michael J. Fox's body finally said 'enough'.   No one’s body can endure years of stress, perhaps not sleeping that well or not enough, perhaps not eating that well or unhealthy foods.

I know from resting more, trying not to take on more than I can handle, that this has a huge positive effect for me.   I am looking toward recovery, however far that path will take me. I am determined to become more well.

Tim

________________________________

Thanks Tim!  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 

3 Comments
    Picture
    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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