...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

SEID/CFS Pacing – We Totally Get It

2/17/2015

4 Comments

 
Picture
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


Picture
4 Comments
Andrea link
2/17/2015 02:16:45 pm

Does anyone know why this illness often seems to be worse the first two years? I was told two years by my Dr, a Specialist and others. When I was still sick after that time, but certainly not as bad as those first two years, I questioned my Dr about why he had told me 'two years' when it was obviously not accurate. He said they say to patients 'two years' because most can't cope with the trauma that it will possibly/likely be longer. I'm now at 16 years. Had it in somewhat of a 'remission' for around 6 years but relapsed 3-4 years ago from stress and the climb out is so painfully slow its ridiculous. I'm improving by 20% a year if I'm lucky, and am terrified I will never get back to my 'remission' state.

Reply
Tim Boland
2/23/2015 03:51:14 pm

I think anyone who has dealt with this illness as long as you have, Andrea, is heroic. There are heroes who are there for others in a moment of crisis or advocate for great ideas but having to deal with any kind of ailment or illness long term is a great challenge to mind and to body.

I imagine there are few of us who would ever have dreamed of having such a condition, and having to postpone or forego things which we loved in life. Still there are things to be grateful for, today it was such a beautiful day with Spring right around the corner. I agree with Martha about continuing on your road and as you say you are improving each year, though slowly, it truly is a very possibility ... recovery, with hope and a definite plan (as our blog master stated last last week)

Reply
martha
2/24/2015 09:45:17 am

So right Tim, hope with a plan! :)

Martha
2/18/2015 01:52:35 am

Andrea, I can imagine how frustrating and scary it is to have relapsed after you thought SEID/CFS was behind you. We hope that you can take the time to recover. We're all here for you. To your question about the two years average, I think this erroneous idea comes from the patients who begin SEID/CFS with a severe viral episode. These patients tend to 'get better' comparatively after two years and drop off doctors radar. I think it's another misunderstanding of SEID/CFS by the medical community.

Reply

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