...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
  • Home
  • About
    • This Site
    • Martha
  • Participate
  • Contact
    • Contact Form
    • Submissions
  • Links
  • Book
  • Further Lessons
  • Thanks

ME/CFS Energy – Intentional Use

11/7/2017

3 Comments

 
Picture
I’ve been doing some reflection of late on my priorities as I move into the second half of my life – OK I’m planning on becoming a centenarian but in the real actuarial world I’m way past the halfway mark.  So I’m an optimist.  There are worse things.
 
As I look forward, I’m trying to be intentional about what I focus on and how I spend my time.  I frequently think about the Annie Dillard quote, ‘How we spend our days is, of course, how we spend our lives.’  When I was struggling with ME/CFS and finally on the right path to unraveling the clues to my own version of ME/CFS, I constantly thought about conserving my energy.  Nowadays, in the ME/CFS community, we frequently talk about the energy envelope and how to carefully protect and nurture our energy progress.
 
What I think we miss in that approach is the opportunity to look forward and make intentional choices about how we will thoughtfully expend what energy we DO have.  And not to empty it out.  But to be aware of the choices we are making about how we spend our precious energy reserves and how that fits in with our longer term goals unrelated to our being in the midst of struggling with a cruel disease.
 

I realize that looking beyond the near future is tough for an ME/CFS patient but I think that it can add value and resolve to the work of getting back to health.  Do you think about how you’re spending your available energy in terms of what you want to be focusing on once you’re well?  Can intentionally using even a small amount of energy in that direction allay some of your frustration with thinking you’re wasting time?  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
Tim Boland
11/13/2017 01:27:52 am

My words tonight will be ‘off topic’ as something happened with me this past week which was deeply upsetting. I am sharing this, Martha, as I imagine many others have been affected, and I remember your frustration at being seen as a ‘head case’ by some doctors.

A big thing in the U.S. at present is the opioid crisis, with the pharma companies being painted as the bad guys. But as I wrote in a comment to a major newspaper recently, there is virtually no mention of the patients who are using an opioid drug responsibly, such as someone like myself, who takes low doses of a medication that was described to me by my pharmacy consultant as low risk, and ‘mild’. What of the millions of people in our country who need medication to help their lives be livable, with talk from others I know who are simply being taken off pain medication with virtually no advance warning; and importantly, no real practical substitute given to help relieve pain.

This in the mind of those who are evidently waging a ‘new war on drugs’ is having a real life effect on people who, like me, have used their medications carefully, never abused them. In my case of several years, I am still on the same dosage I was at the beginning and have never used a single pill more than what has been prescribed. Certainly there are people who ask for ever higher doses of drugs and do abuse them, but there are many people who use their medications faithfully and responsibly.

So, I go to a new doctor at the ‘pain clinic’ who is recommending ‘physical therapy’, even after I told him that I read an article related to medical research which indicates that for some patients with fibromyalgia, that increased physical activity can actually cause increases of pain for some patients. And that too much physical activity causes a lot of additional pain for me.

I do fine with moderate gentle walking. He also is talking about eventually reducing the one tiny pill I take at bedtime for sleep. The latter not being even an opioid, but potentially considered ‘addictive’ even though I have been on it at the same dose for several years, and would not even take any medication if I did not need it to help relieve pain and be able to sleep for several hours. I do not take medication for ‘fun’ and I certainly have no inclination to addiction.

I asked this doctor what I would do without my medication for sleep, and remarkably his idea is that if I get enough physical exercise, then I will be tired enough to go to sleep! I am plenty tired on many nights when I go to sleep.

I wonder how many of these doctors have any inkling what having chronic illness feels like, what it feels like to have pain on a day to day basis for extended periods of time.

Reply
Martha
11/13/2017 03:01:48 pm

Tim, as I read your comment, I felt my anger rise. Who are these doctors who have no training in chronic diseases? The idea of telling a fibro/cfs patient to get more exercise then they'll be tired enough to sleep is just plain ignorant. I hope that you're getting a new doctor pronto! Keep us posted.

Reply
Tim Boland
11/20/2017 12:52:52 am

Thank you Martha for your support and understanding.


Your comment will be posted after it is approved.


Leave a Reply.

    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.

      Join Our Community
      Enter your email address to
      follow this blog.

    Join

    For Books, Supplements, Sleep aids and more

    Picture

    Archives

    December 2022
    October 2022
    September 2022
    August 2022
    July 2022
    June 2022
    May 2022
    April 2022
    March 2022
    February 2022
    January 2022
    December 2021
    November 2021
    September 2021
    August 2021
    July 2021
    June 2021
    May 2021
    April 2021
    March 2021
    February 2021
    January 2021
    December 2020
    November 2020
    October 2020
    September 2020
    August 2020
    July 2020
    June 2020
    May 2020
    April 2020
    March 2020
    February 2020
    January 2020
    December 2019
    November 2019
    October 2019
    September 2019
    August 2019
    July 2019
    June 2019
    May 2019
    April 2019
    March 2019
    February 2019
    January 2019
    December 2018
    November 2018
    October 2018
    September 2018
    August 2018
    July 2018
    June 2018
    May 2018
    April 2018
    March 2018
    February 2018
    January 2018
    December 2017
    November 2017
    October 2017
    September 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    August 2013
    July 2013
    June 2013
    May 2013
    April 2013
    March 2013
    February 2013
    January 2013
    December 2012
    November 2012
    October 2012
    September 2012
    August 2012
    July 2012
    June 2012
    May 2012
    April 2012
    March 2012
    February 2012
    January 2012
    December 2011
    November 2011
    October 2011
    September 2011
    August 2011
    July 2011

    Categories

    All
    Appreciation
    Attitude
    Being Positive
    Brain Fog
    Choices
    Community
    Connect
    Coping
    Data
    Diagnosis
    Doctor
    Emotions
    Energy
    First
    Food
    Funding
    Genetics
    Goals
    Gratitude
    Groups
    Guest Blog
    Gut Feelings
    Health
    Helping
    Holidays
    Hope
    Humor
    Immune Support
    Inner Voice
    Ion Channelopathy
    Irony
    Isolation
    Journal
    Log
    Mantra
    Memory
    Mind
    Negativity
    Nutrition
    Opinions
    Organizations
    Outlook
    Pace
    Participate
    Patience
    Patterns
    Personality
    Perspective
    Protocol
    Provider
    Pushing Too Hard
    Pushing Too Hard
    Record
    Recovery
    Relapses
    Research
    Resolutions
    Rest
    Sleep Depravation
    Step By Step
    Step By Step
    Strategies
    Supplements
    Support
    Take Control
    Take Control
    Thankfulness
    Vacation
    Variables
    Version

    RSS Feed

    Picture
    Copyright © 2011-2012
    Triple Spiral MEDIA LLC