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ME/CFS Load – Cut Yourself Some Holiday Slack

11/27/2012

2 Comments

 
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Before I was sick with ME/CFS, this was the time of year for long lists of ‘To Dos’ and even longer lists of ‘To Buys’.  These lists included a lot of shopping trips, decorating, baking, wrapping, card mailing, entertaining and generally trying to please everyone I loved and cared about.  Even when I was healthy, it was overwhelming and I frequently fell short.  Then when I was struggling with ME/CFS, it was the perfect storm that launched a major push crash cycle.  And more failure which, of course, I internalized and turned into more stress and energy drain.

After a particularly bad holiday week, I finally came to realize that not taking care of myself not only hurt me but actually added to the load for everyone else.  The best gift I could give to my family around the holidays was the healthiest me I could muster.  And that required tearing up the ‘To Do’ list and being realistic.  Not easy to do when the carols are playing and the lights are twinkling.  The cultural and commercial pressure is pervasive around the holidays.

Eventually I learned to cut myself some holiday slack and let it all go.  I picked out a few choice things which I gave myself plenty of time to do.  And I gave my family the healthiest ME/CFS sufferer I could manage.  Even now, after I am fully recovered, I have eliminated much of the holiday rush.  I’ll never go back to the hectic ‘To Do’ list.  What have you trimmed from the holiday ‘To Dos’?  How do you cope?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

2 Comments

ME/CFS Attitude – Find Thankfulness

11/20/2012

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© 2012 TSM
When I sat down to blog about Thanksgiving, I looked at what I had written last year.  I don’t think I can do a better job of expressing how I feel about this holiday and struggling with ME/CFS at the same time.  So here it is again:

Thanksgiving traditionally generates clichés about thankfulness.  The mantra basically goes like this:  Be thankful for what you DO have, not what is missing.  Most of us would agree with this outlook.  It is better to focus on the positive.  But it isn’t easy to do especially when you’ve been struggling with ME/CFS for a year or for 20 years.

When I was sick, I would allow myself to indulge in some self pity around this time of year but I knew that was totally unproductive and a waste of what little energy I had.  I would then get irritated with myself for my self-centered attitude and so just added more negativity to my load.  But it can be unfair to expect a person who is struggling with a body that can’t handle normal activity to be upbeat, positive and ultimately thankful.

So as the rest of the world around me went about their daily routines, I would look at my life and try to find something to be thankful for.  Mostly, I focused on the few people around me who understood what I was going through and supported me in large and small ways.  I made a point to tell them how much I appreciated what they did.

And after I let go of the negativity toward myself, I realized that I needed to appreciate the work I did all year long.  The work of getting well again.  Sticking to the snails pace recovery, following the protocol when I didn’t want to and being present in my life in whatever way I could realistically handle.

How are you handling thankfulness?  Are you finding things to be thankful for?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

And for you and all of your loved ones,

I Wish you a warm and Bountiful Thanksgiving,

Be Well Again,

Martha

2 Comments

ME/CFS Sleep Deprivation - Switch to Sweet Dreams

11/13/2012

2 Comments

 
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© 2012 TSM
I’ve been struggling with a stubborn cold for almost a week.  The worst side effect is that I haven’t been sleeping well due to congestion and persistent coughing.  After several nights of this, I began to feel the lack of sleep catching up with me and experienced a small taste of the devastating sleep deprivation that I suffered when I had ME/CFS.

In the beginning of my struggle with ME/CFS, I didn’t understand the connection between my exhaustion and the quality of my sleep.  My perception was that lack of sleep couldn’t be my problem as I was in bed sleeping for eight or more hours at night and resting/napping a lot of the day.  It took me a while to realize that not all sleep is equal.  Yes, I was in bed sleeping but I was frequently waking up throughout the night because of pain and discomfort.  I wasn’t getting to REM sleep which is where all the rejuvenating sleep happens.

Once I understood this, I focused on creating the optimal environment and schedule for my sleep needs.  And after adding a safe medication, I was finally able to get the deep restful sleep that ME/CFS requires in order to begin the path back to health.  How do you manage your need for rejuvenating sleep?  What are your strategies for achieving sweet dreams?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

2 Comments

ME/CFS Rollercoaster – Vote for Change

11/6/2012

4 Comments

 
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I think that Americans are relieved to finally get to voting day.  No matter which party of change you support, tomorrow’s lack of election ads, phone calls and mailings will be the change that all of us welcome the most.  For me, it had gotten to the point that I couldn’t watch even an hour of TV.  The constant barrage of positive and negative ads was not only disconcerting, it felt like I was once again riding on the ME/CFS rollercoaster.  It reminded me of the positive highs and negative lows I rode when I was struggling with ME/CFS.  Up, down, up, down, up, down.

It wasn’t until I decided to change my approach to ME/CFS that my true recovery began.  And of course I didn’t arrive at this decision and then never go back to my old ways.  I allowed myself to have occasional slip ups which didn’t serve me well.  Eventually though I got with the protocol and stuck with it.  So deciding to change was the relatively easy part.  Staying the course and being patient with the progress was the true challenge.

So today, after you do your civic voting, do some personal voting about your struggle with ME/CFS.  Vote for changing your approach and for getting off the rollercoaster.  Then settle in to go the distance.  It is a challenge which will test your resolve but the potential reward is a steady path back to health.  Are you determined to permanently get off the ME/CFS rollercoaster?  What change in your treatment plan are you voting for today?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

4 Comments
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    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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