...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 Crash Triggers – What Do You Avoid?

7/21/2020

4 Comments

 
Picture
The last few days have been hot and muggy in New England.  Summer is definitely here.  Over the weekend we were doing some yard work and were working up a sweat.  I commented that I wanted to go for a swim and my son remarked that I don’t swim.  I only float.  From his perspective, it was true.  My version of swimming is mostly with flotation – usually a noodle.  And I definitely don’t swim strokes over any distance.  But it hasn’t always been this way.

Before I struggled with ME/CFS, I swam laps in a pool every day at lunch or early in the morning if my schedule allowed.  Then came ME/CFS and all that went away.  Skip forward several years to when I was finally following the protocol and getting better.  I was avoiding push/crash cycles and feeling stronger each month.  Then I got the bright idea to try swimming again - major crash.  More time passed and I was back on track and feeling stronger.  Yes, I tried swimming again – another crash.  Full disclosure, I did this three times.  What was I thinking?  I never tried to swim again.  Even after I climbed Kilimanjaro, I was afraid to try swimming again.


My brain is now hard wired to avoid swimming.  Even though it makes no sense, somewhere inside me I still fear that swimming will trigger an ME/CFS crash.  I used to think I was crazy for still thinking this but I came to realize that instinct is important in survival and that I’m not much of a gambler.  What crash triggers have you learned?  What do you avoid?  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


4 Comments

ME/CFS Emotions - Droughts and Deluges

6/30/2020

2 Comments

 
Picture
Early summer weather in New England can vary dramatically day to day.  This year is no exception.  The normal spring rains which enable the flowering of bulbs and perennials have been alternating with oppressive dry summer like heat waves.  Cold heavy rain for days followed by sun baked days approaching 95 degrees.  Last week the weather forecasters were a buzz about the storms moving up the eastern seaboard laden with needed water.  As the front got closer, things shifted to warnings about flooding and washouts.  And of course I began to think about the constant emotional peaks and valleys I experienced when I was struggling with ME/CFS.
 
As with all emotions that we actively fight to contain, they are held at bay by intentional shoring up with periods of overspills which always seem to be triggered unexpectedly.  The cruelty of ME/CFS only serves to amplify the intensity of these highs and lows.  My first year was full of frustration with the medical community that labeled me as a head case.  With few exceptions I was looked upon as ‘mentally weak’ and in need of therapy.  After a period of permitting that negativity to cling to me, I finally rejected it.  But I was still left with a pattern of extremes where sometimes the skies would dump a deluge of emotions and I would struggle to tread water.  After climbing out of that, I would experience a period of emotional drought when I could stay focused on the protocol and the slow but observable progress toward getting well again.

 
This focus helped me to eventually steer away from emotional lows and to avoid riding the drought and deluge roller coaster.  How do you shore yourself up?  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 Distractions – Stay on Plan

6/9/2020

0 Comments

 
Picture
I had a plan for the last two weeks but it didn’t play out the way I’d envisioned.  Honestly, I can’t remember how things got so off track.  Maybe I was trying to juggle too much or maybe it was the reality that too many variables were in play.  I was truly over ambitious.  Of course, this reminded me of when I was struggling with ME/CFS and it took so long for me to finally get focused on the plan – the single focus plan.

During the beginning of my struggle, I was riding the rollercoaster of push/crash.  I had no consistent plan for managing my illness.  Each day was a question mark.  How was I going to do today?  How would I feel?  And this lack of planning only made me feel worse.  Then I finally understood that all the distractions of life – all of the activities – were keeping me from getting well again.  I needed to ignore the distractions and focus on saving my energy and using it with discretion.  I needed to stay with the plan.

So the warmer weather is here.  The summer will be filled with activities.  It will be a time that pushes our wellness plans to the limit.  What are your strategies for staying on plan?  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 Hope – Paired with a Wellness Plan

5/19/2020

2 Comments

 
Picture
While I was in the depths of my struggle with ME/CFS, I had the opportunity to be seen in a Boston clinic where I thought they were familiar with ME/CFS.  The first doctor I saw there, after my complete lab work up and physical exam, was truly unhelpful.  He told me that there was nothing physically wrong with me and that I should go home and “have hope”.  At that moment, he was the recipient of all the rage about having ME/CFS that was pent up inside me.  His eyebrows may still be singed.
 
When I finally started working with another doctor at that clinic, and treating myself like a case study of one, I began to see slow but real progress.  It was then that I opened up to a collaboration of hope paired with a wellness plan.  As I worked through my physical illness and worked with my daily patterns, I also began to work on my attitude.  Prior to ME/CFS, I was an optimist by nature.  But ME/CFS had tainted my outlook.  It was beyond frustrating to be struggling with a physical illness that almost no one understood or even acknowledged to be real.  So, I began an intentional effort to raise my spirits and have some hope for recovery.  As I look back now, this was only possible because I was beginning to see glimmers of physical progress and I had determined to devote my immediate future to being well again.

 
I understood that hope without a focused effort to be physically well is equally as ineffective as a wellness plan without hope.  For me, they needed to be paired.  How do you balance your physical recovery plan with your outlook?  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 posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,
Martha


2 Comments

ME/CFS Familiar Territory – Stay-At-Home

4/21/2020

2 Comments

 
Picture
In the struggle to deal with ME/CFS, we often feel as if the whole world is moving along and we’re forced to cut back and rest.  We feel constricted in our energy to function and participate in life.  Meanwhile, everyone else can go and do without a thought about their health.

Covid-19 has changed all of that.  Everyone else is now thinking about their health.  Worldwide.  And those of us who are blessed to have safe homes and enough food, are quarantining and are restricted in our movements outside of our homes.

Over the years that we’ve spent sick with ME/CFS, we’ve struggled to explain to others what we’re going through in terms of isolation.  The separation from others, the long periods of time by ourselves, the depression that creeps in.  The endless “I’m sorry I can’t be with you todays”.  The feeling that we’ll be stuck like this for months and possibly years.  And the helplessness that goes with it.

I don’t think that anyone reading this blog is happy to have company in this isolation due to the pandemic.  But I don’t think that we’ll need to explain this part of our struggle with ME/CFS anymore.


To all of you, please, stay safe.  Stay home.  And don’t hesitate to call on friends and neighbors to bring you what you need.  ME/CFS is an under lying condition that further compromises our risk of contracting the virus.  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


2 Comments

ME/CFS Optimism – Brighter Days

4/7/2020

0 Comments

 
Picture
It happens to me every year around the beginning of April.  Although I don’t see the signs of change in myself yet, one of my window plants catches my notice.  There’s a new vibrancy in its color or maybe even a tiny sprout where a dead leaf had dropped.  Something triggers my attentiveness and before I’ve cognitively made the connection, I’m trimming, repotting and fertilizing all my plants.
 
What my plants have all been responding to, and what I’m also caught up in, are the longer days with brighter light streaming in my windows.  And I think back to my ME/CFS days and remember how hard it was day after day, week after week and month after month to keep my spirits up.  To remember my resolve to keep to the protocol, to allow myself the space to heal, and most importantly to cut myself the mental slack I needed.  The only time I didn’t need to be intentional about being upbeat was when the light began to get noticeably brighter at this time of year.  There’s a reaction to the increasing daylight that we experience on a cellular level.  I’m sure there are reams of scientific studies that have investigated this response but I don’t need to read them.  My sense of renewal and optimism are palpable.  And during my ME/CFS struggle, it was natural to see this NOT as the marking of another year of this cruel illness, but as the beginning of the year when my progress would get me to the next health plateau – the next stage of recovery.

 
I’m hoping that you are able to harness this brighter light and natural source of anticipation to carry you successfully along your path back to wellness.  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 Transitions – Progress to Being Proactive

3/17/2020

2 Comments

 
Picture
Three years ago we took in an abandoned Maine Coon cat so she could be transitioned to a new home.  Her prior life was with an elderly woman who dotted on her and made her quite comfortable.  Then, her owner became ill and was in hospital care for a month.  During that time, the cat lived alone in the house and a neighbor came in to feed her.  She had always been a reclusive cat who disliked strangers so the month was traumatic.  Her owner wasn’t able to return to her own home so we ‘captured’ the freaked out cat and deposited her on our heated porch.  Needless to say this transition had been hard.  Watching her struggle reminded me of myself when I was first diagnosed with ME/CFS.

Being ripped out my normal life and dropped into the wastebasket of ME/CFS was horrifying.  I hated it.  I railed against it.  I expended a lot of energy being angry with my situation and the medical establishment.  The cat on our porch did the exact same thing.  She was clearly pissed off.  When she wasn’t eating or sleeping, she hissed and growled at everyone except me.  She even swatted if the wrong person got too close.  She clearly wanted affection and purred loudly when I pet her but she was confused and mad.  Who wouldn’t be?

She wanted her old life back just like I did.  But the path for her to find a new home was not to go back the way she came.  And so it was with me.  I had to progress forward to find a new path in order to regain my health.  I had to progress to being proactive – to taking responsibility for my recovery and to stop wasting energy on the blame game.  The cat on our porch didn’t have the tool of reasoning.  I couldn’t sit down with her and explain that she was just in transition and that we were looking for a permanent home for her – a new place that would be warm and loving and much like her old home.  In the end, we did find her a new home and a new elderly woman who dotted on her.

Before I accepted my struggle with ME/CFS, I was in that same transitional place.  If you’re still there, It’s time to progress forward into taking proactive control of your illness and your path back to wellness.  Are you out of transition?  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 Halt – When we had other plans

3/3/2020

2 Comments

 
Picture
Recently we were driving along with a schedule for the day.  Then bang.  We had a tire blow out.  We were able to safely get to the side of road but that one event shot holes in the plan for the day.  As we began to assess the condition of our spare tire and whether all the parts of the jack were in the truck, I was reminded of how ME/CFS suddenly forced me to change my plans.

There I was, tooling along with my life plan and then suddenly – bang – I was so ill that I was bedridden.  And after going through the seemingly endless screening process, I was diagnosed with ME/CFS.  Not great news.

Back on the side of the road, we thought we had everything to change the tire and started in.  Then we realized that the jack crank was missing.  Great – that meant that we had to raise up the car one half turn at a time.  As I knelt by the car, inserting the lug wrench, turning a half turn, removing the lug wrench, moving it back to the other side, then reinserting and turning a half turn – over and over and over – I kept thinking about how ME/CFS required me to invent tools to get well because the normal methods didn’t work.  And getting well was agonizingly slow.  And repetitive.  And repetitive.  And really repetitive.

So having that flat tire abruptly changed my plans and it took more time than it should have because we didn’t have the right tools.  And getting ME/CFS abruptly changed my life plans and it took more time to get well from ME/CFS because we needed to invent the right tools.   What tools are you inventing?  What tools are you learning from others?  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 postings on Tuesdays.  And consider being part of the conversation.
Be Well Again,
Martha


2 Comments

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 Attitude – Highs and Lows

2/4/2020

2 Comments

 
Picture
Like most people, post the holiday rush and glitz, I’m feeling the let down.  Maybe it’s the juxtaposition of so much busyness followed by so much quiet.  When I was struggling with ME/CFS, the contrast was starker.  Other people went back to their normal, active lives and I went back to my forced slow recovery pace.  It was a tough reality to accept.
 
Handling your ME/CFS attitude is key to finding a path back to wellness.  It’s hard to keep yourself up and motivated when you compare yourself to the others around you.  And in addition to the physical illness which you are struggling to understand and heal, you have to deal with all the negative judgments and assumptions made about you by others.  And don’t forget how harsh and judgmental we can be on ourselves which is completely counter productive.
 
The only attitude we have control over is our own.  So cut yourself some serious slack and jettison the self recrimination.  And decide to ignore everyone else’s judgments.  It’s a waste of precious energy fretting about it.  Focus on what you CAN do to heal and recover.  And let all the rest of that negative fodder go.

 
How do you screen out the negative attitudes of others?  Of your self?  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
<<Previous
Forward>>
    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

    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