...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 Support - Words of Appreciation

2/11/2020

0 Comments

 
Picture
It’s almost Valentine’s Day.  One of those loosely historical, made up days to sell stuff.  OK that was cynical.  But we seem to have developed an entire year of these almost monthly events which push us to do or buy something.  Or feel out of it if we don’t.
 
For me, today is an exception.  When I was struggling with ME/CFS, I wasn’t very good at recognizing all the kind and thoughtful things people did for me - Family, friends and strangers too.  Unfortunately, for a good part of my struggle, I was seeing everything through a veil of angst – anxiety about my situation tinged with hope for resolution.  This sometimes kept me from seeing the people around me who cared and wanted to support me.  I often forgot, caught up in my own wrestling match of emotions and physical malfunctions, that those around me were feeling some of the same helplessness – not sure of what to say, what to do or when to just be present for me.
 
For some reason, on the first Valentine’s Day after I was beginning to feel strong again, I felt the desire to express my ‘love’ and appreciation to those who were supporting me.  It started a tradition that I still follow.  Today has become a reminder day for me to stop for a moment and make sure that I let the people in my life know how much they mean to me and how much I appreciate them.  Yes, that’s hokey.  But I prefer it to cynicism.
 
Are you making time to let people know how much you appreciate them?  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
0 Comments

ME/CFS Isolation – Be Connected and Get Help

10/8/2019

2 Comments

 
Picture
I was recently in a remote place with no cell service and no access to WiFi.  At first it was bliss.  No phone ringing.  No text messages requiring immediate response.  No daily diet of news feed.  Just quiet and my own thoughts.  But of course, I eventually felt a bit isolated and disconnected.  It reminded me of when I was struggling with ME/CFS and how alone I felt at times.

We are trained in our culture to be independent.  To be strong and capable.  The old ‘boot strap’ adage comes to mind.  We believe that people who are dependent are weak.  They are inadequate.  We somehow learn not to ask for help.  Then we find ourselves in a situation like ME/CFS where we need to ask for help and we can’t.  We don’t want to be a bother or impose.  We don’t want to appear weak or needy.

So, we find ourselves struggling with ME/CFS, which is a cruel disease that leaves us feeling better one day and crashing the next, and we’re fearful of asking for the help – which could be key to our recovery – because we’ll be seen as weak and ‘just depressed’.  Doubly cruel.

It’s important to take a good look around and see those in your life who could help.  Make an effort to connect.  Make an effort to explain what’s happening to you.  If you’ve read my book, give it to them and ask them to read it.  If people don’t understand what you’re going through, it’s hard to support you.

One lesson I learned after I was fully well again – people who cared, who wanted to be connected and who wanted to help had no idea what to do.  They need your help to understand and to know how to help you.  Divide up your needs into smaller pieces so it won’t be too much for one person.  What are you doing to be connected and to get help?  What are your strategies ?  What works for you?  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 Apprehension – Letting It Go

7/9/2019

2 Comments

 
Picture
It’s been a challenging couple of weeks for me.  Things are settled for now but I know that the future will at some point entail more of the same kind of challenges.  And I feel a kind of apprehension about it.  Of course, it’s reminded me of the feelings that used to affect me when I was struggling with ME/CFS.
 
I had tried mightily to not let feelings of anxiety or fear of more bad days get to me.  My cognitive brain accepted that I would have to deal with them as I slowly recovered but my emotions and psyche were uneasy – waiting for the signs and body pain that would be the harbinger of a bad day.  Sometimes I would allow this anxiety to affect my day even if it was by comparison a reasonable day.  It took a great deal of intentional focus to see the positive side of how I was physically feeling.  And to ignore the anxious voice inside of me.
 
The strategy that finally worked for me was planning ahead.  During the time I was bedridden, I would plan by the hour.  What should I be doing during the next few hours to achieve a good outcome?  As I got healthier, I planned by the day.  What should my day look like in order to stick to the protocol and have a successful day?  Eventually, I was looking at a week and planning a well paced reasonable series of days that generated a positive result.  It seems simple but it worked.
 

How do you let go of the apprehension?  What are your strategies?  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 Holidays – The Gift of Helping

12/4/2018

0 Comments

 
Picture
Someone asked me what I’d like for the Holidays and honestly I couldn’t think of a thing I needed or wanted.  Maybe a technology upgrade but not the typical holiday gift items that one would search for while wandering the mall among the frenzied herds.  When I was struggling with ME/CFS, and someone asked what I wanted for the holidays, all I could think of was my health.  And of course they couldn’t give me that.
 
At the time, I don’t remember having the clear thought process to be able to articulate the kinds of ‘gifts’ that would have been truly helpful in supporting my recovery.  With hindsight, now I can think of many that would have been much appreciated.  In my younger days when I was short on cash, one of my favorite ‘go to’ gifts was the personal gift certificate.  I would think of something I could do for the recipient and create a certificate that could be presented to me when the service was needed.
 
Imagine all the helpful things that people could do for you as you struggle with ME/CFS.  Driving to appointment, cooking a meal, mowing, shoveling and walking the dog come to mind.  What would you value in a personal gift certificate?  What do you wish was in your helping gift?  Tell us and then tell those who want to help.  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
0 Comments

ME/CFS Solitary Struggles – Asking For Help

2/13/2018

0 Comments

 
Picture
Recently I was trying to juggle several things that really required two pairs of hands.  Of course I wrestled with it for a while before I admitted that I needed help.  And it reminded me of all the time I spent struggling with ME/CFS in solitude.  Some of it was pride – the type A ‘I can do it all’ scenario.  Some of it was reluctance – not knowing if I would get a supportive response.  And some of it was not wanting to share all the painful, frustrating details of ME/CFS.  We tend to be private people and revealing ourselves can make us feel vulnerable and exposed.
 
For me, I finally had to admit that I needed help as I struggled with ME/CFS.  And that required not only a willing and compassionate helper, but it also required that I get off my ‘I can do it’ pedestal and be willing to reveal a Martha who was not in control and on top of things.  I needed to be ready to show weakness and not be ashamed or feel belittled.  It’s a huge step for some of us.
 
But I couldn’t avoid the reality that I needed help.  So I had to accept the need to reveal myself – and all my blemishes – and get up my courage to ask for help.  It resulted in some half hearted maybes which never materialized, several uncomfortable nos, and blessedly a few compassionate yeses.  And that was all I needed.
 
Do you have trouble asking for help?  How do you set aside your pride and privacy in order to get help?  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
0 Comments

ME/CFS Holidays – The Gift of Helping

12/5/2017

0 Comments

 
Picture
Someone asked me what I’d like for the Holidays and honestly I couldn’t think of a thing I needed or wanted.  Maybe a technology upgrade but not the typical holiday gift items that one would search for while wandering the mall among the frenzied herds.  When I was struggling with ME/CFS, and someone asked what I wanted for the holidays, all I could think of was my health.  And of course they couldn’t give me that.
 
At the time, I don’t remember having the clear thought process to be able to articulate the kinds of ‘gifts’ that would have been truly helpful in supporting my recovery.  With hindsight, now I can think of many that would have been much appreciated.  In my younger days when I was short on cash, one of my favorite ‘go to’ gifts was the personal gift certificate.  I would think of something I could do for the recipient and create a certificate that could be presented to me when the service was needed.
 
Imagine all the helpful things that people could do for you as you struggle with ME/CFS.  Driving to appointment, cooking a meal, mowing, shoveling and walking the dog come to mind.  What would you value in a personal gift certificate?  What do you wish was in your helping gift?  Tell us and then tell those who want to help.  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
0 Comments

ME/CFS/SEID Self Care – Be Sick Be a Patient

11/15/2016

2 Comments

 
Picture
My daughter recently had surgery and needed help when she was back home.  I had all I could do to convince her that I was going to take care of her.  She finally relented and started being a patient.  Of course, it reminded me of myself when I was struggling with ME/CFS/SEID.  For a long time, I fretted over the things that I wasn’t getting done, how I wasn’t contributing, how much of a slacker I was in taking care of my loved ones and my life.
 
When you’re struggling with a disease as cruel as ME/CFS/SEID, the coulda shoulda wouldas can weigh heavily on your mind.  You look like you’re ok.  Some days, for a while, you might actually feel like you’re ok.  And for the most part, the people around you don’t get what you’re going through.  So your tendency is to be inconsistent in your self care.  You crash when you have to.  You push when you think you can get away with it.  And you spend many days in between trying to squeeze as much as you can out of yourself.  And what does that get you? - Chronic ME/CFS/SEID.
 
It took me a long time to allow myself to be sick and to be a patient.  And even after I knew I needed to make self care my top priority, I still stumbled and struggled to justify what at times seemed to be so selfish.  But after I finally stayed true to being a patient, I began to regain my health in a significant way.
 
How do you stay true to managing your self care?  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

SEID/CFS Holidays – The Gift of Helping

12/8/2015

2 Comments

 
Picture
Someone asked me what I’d like for the Holidays and honestly I couldn’t think of a thing I needed or wanted.  Maybe a technology upgrade but not the typical holiday gift items that one would search for while wandering the mall among the frenzied herds.  When I was struggling with SEID/CFS, and someone asked what I wanted for the holidays, all I could think of was my health.  And of course they couldn’t give me that.
 
At the time, I don’t remember having the clear thought process to be able to articulate the kinds of ‘gifts’ that would have been truly helpful in supporting my recovery.  With hindsight, now I can think of many that would have been much appreciated.  In my younger days when I was short on cash, one of my favorite ‘go to’ gifts was the personal gift certificate.  I would think of something I could do for the recipient and create a certificate that could be presented to me when the service was needed.
 
Imagine all the helpful things that people could do for you as you struggle with SEID/CFS.  What would you value in a personal gift certificate?  What do you wish was in your helping gift?  Tell us and then tell those who want to help.  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 Holidays – The Gift of Helping

12/9/2014

2 Comments

 
Picture
Someone asked me what I’d like for the Holidays and honestly I couldn’t think of a thing I needed or wanted.  Maybe a technology upgrade but not the typical holiday gift items that one would search for while wandering the mall among the frenzied herds.  When I was struggling with ME/CFS, and someone asked what I wanted for the holidays, all I could think of was my health.  And of course they couldn’t give me that.

 At the time, I don’t remember having the clear thought process to be able to articulate the kinds of ‘gifts’ that would have been truly helpful in supporting my recovery.  With hindsight, now I can think of many that would have been much appreciated.  In my younger days when I was short on cash, one of my favorite ‘go to’ gifts was the personal gift certificate.  I would think of something I could do for the recipient and create a certificate that could be presented to me when the service was needed.

 Imagine all the helpful things that people could do for you as you struggle with ME/CFS.  What would you value in a personal gift certificate?  What do you wish was in your helping gift?  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 Isolation – Be Connected and Get Help

5/6/2014

3 Comments

 
Picture© 2014 TSM
I was recently in a remote place with no cell service and no access to WiFi.  At first it was bliss.  No phone ringing.  No text messages requiring immediate
response.  No daily diet of news feed.  Just quiet and my own thoughts.  But of course, I eventually felt a bit isolated and disconnected.  It reminded me of when I was struggling with ME/CFS and how alone I felt at times.

We are trained in our culture to be independent.  To be strong and capable.  The old ‘boot strap’ adage comes to mind.  We believe that people who are dependent are weak.  They are inadequate.  We somehow learn not to ask for help.  Then we find ourselves in a situation like ME/CFS where we need to ask for help and we can’t.  We don’t want to be a bother or impose.  We don’t want to appear weak or needy.

So, we find ourselves struggling with ME/CFS, which is a cruel disease that leaves us feeling better one day and crashing the next, and we’re fearful of asking for the help – which could be key to our recovery – because we’ll be seen as weak and ‘just depressed’.  Doubly cruel.

It’s important to take a good look around and see those in your life who could help.  Make an effort to connect.  Make an effort to explain what’s happening to you.  If you’ve read my book, give it to them and ask them to read it.  If people don’t understand what you’re going through, it’s hard to support you.

One lesson I learned after I was fully well again – people who cared, who wanted to be connected and who wanted to help had no idea what to do.  They need your help to understand and to know how to help you.  Divide up your needs into smaller pieces so it won’t be too much for one person.  What are you doing to be connected and to get help?  What are your strategies ?  What works
for you?  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
<<Previous
    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