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ME/CFS Pacing – Protect Part of Your Day

7/29/2014

3 Comments

 
Picture© 2014 TSM
When you’re struggling to recover from ME/CFS, pacing is one of the most difficult challenges.  It’s too easy to get caught up in the flow of the day and lose control of what you had intended.  We quickly can become victim to over doing and triggering a relapse. It can be absolutely maddening. We know what we need to do and not do. We have planned out the day.  It’s in alignment with the
protocol we’re following and we know if we follow the plan then we will have a
successful, positive day.

Then the unpredictable, real world seems to take over.  By the late afternoon we’ve either blown the plan to bits or we’re barely on track just hanging on.  And we seem to do this way too often.  OK, we’re human and we can forgive our weaknesses.  But ME/CFS is not forgiving.  ME/CFS is opportunistic and just waiting for an opening to assert itself like an energy gremlin.  So what to do?

One of the strategies I used was to plan my day with built in breaks.  I would sandwich them around the most demanding part of the day and sometimes also right in the middle if need be.   I would have ‘optional’ parts of the day that I could opt out of depending on my energy levels and what else was still required of me.  Essentially, I planned for unpredictable.  I gave myself space in the day to rest and to do whatever self-care I needed.

How are you pacing for the unpredictable?  What part of your day do you protect?  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

ME/CFS Choices - Lives that are Unhealthy

7/22/2014

4 Comments

 
Picture© 2014 TSM
In a comment last week, Tim shared a tale about a severely sick man who recovered when he changed the patterns of his life.  It got me thinking about ME/CFS and how the strategy I used to get well was to carefully examine all my illness patterns.  I documented them and looked for clues. Then I adjusted my patterns and so on until slowly over a long period of time I began to feel well again.  During that process I observed in myself patterns that not only didn’t serve we well as a person trying to recover from ME/CFS, these patterns were damaging for a healthy person.

Anyone struggling with ME/CFS becomes acutely aware of the health they once had and lost.  For many of us, myself included, that good health had been taken for granted.  When I think of the ways I had pushed myself physically, I wonder
how my body was able to tolerate it as long as it did.  I was clearly vulnerable when I contracted ME/CFS.

This cruel disease is challenging enough to unravel but then we also need to decide what kind of life we want when we are
finally well again.  "I want my life back", is frequently lamented.  So what kind of life do we want back?  I decided that I didn’t want the stressful, physically demanding life that I had before.  And I wanted to take better care of my healthy self than I had been.  My old eating and self-care habits were awful.  So as I began to recover, I decided to make many of my new healthier habits part of the lifestyle I would continue to follow when I returned to full health.

So don’t wait.  Start making choices now that you want to carry with you into your new healthier life when you have recovered from
ME/CFS.  It will help you now as you return to full health and it will help you to stay healthy.  What positive health habits are you planning to incorporate into your healthy life?  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 Support – Talk About What has Happened to You

7/15/2014

8 Comments

 
Picture© 2014 TSM
I often hear from people struggling with ME/CFS who feel alone and isolated.  Their efforts to stay connected are stifled by their limited energy and their inability to explain ME/CFS.  We’ve all been there.  And for many of us, despite the fact that we deal with ME/CFS every day, we don’t really understand it.

 When I was sick, I didn’t know how to tell people what had happened to me.  The official definition of ME/CFS didn’t help.  It’s a group of vague symptoms that occur for 6 months or more. It’s not even a disease – it’s a syndrome. 
And when I was able to be up and around, I didn’t look sick.  People didn’t see me on the days when I was bedridden and unable to function normally.

I did make an effort to explain what was happening to me and thought that I had been successful with a few of those closest to me.  I didn’t realize until after I wrote my book how many people never understood despite my efforts to explain.  My sister came to me in tears after she read my book, apologizing for not knowing how sick I had been.


Make an effort to talk about your ME/CFS struggle.  If you have a copy of my book, share it.  Ask others to read it.  There are many other personal accounts of struggles with ME/CFS.  Share the ones that match your own experience.  Make every effort to communicate what has happened to you.  Have you had any successes?  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

8 Comments

ME/CFS Self-Care – Knowing Our Limits

7/8/2014

2 Comments

 
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On a recent blog – Out of Power – Tim’s comments got me thinking about what we know about our limits and what we do for others knowing that we will exceed those limits.  Our wish to please the people we care about and to do for them somehow overrides all we’ve learned about self-care and especially everything we know about recovery from ME/CFS.

I was reminded of a book I first read in my twenties when I was babysitting - “The Giving Tree” by Shel Silverstein.  Maybe you’re familiar with it.  On first reading, I thought it was a
lovely story about love and what a parent will give selflessly to a child.  At the time I saw it from the viewpoint of a child thinking about my mother and her love for me.  The next time I read the book, I was a parent myself and I was reading to my child.  My fond memory of the book was dashed as I turned each page and read how the main character, a tree,
gave and gave and gave to ‘the boy’ until she was nothing but a lifeless stump.  And even then, she still gave by letting the now aged boy sit on her.

Healthy people often struggle with self-care choices.  As ME/CFS patients we make daily decisions about self-care – energy levels, rest needs, symptom management and recovery protocols.  And despite all we have learned, we somehow ‘decide’ to push ourselves too far for our loved ones.  Who are we fooling?  How do we keep within our limits?  How do we communicate honestly with our loved ones?  How do we show our love without suffering a set back?  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 Crash Triggers – What Do You Avoid?

7/1/2014

7 Comments

 
Picture© 2014 TSM
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 good 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 floatation – 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

7 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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