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ME/CFS/SEID Choices - The Holiday Bustle

11/29/2016

2 Comments

 
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Before I was sick with ME/CFS/SEID, the holidays were a blur of activities in addition to the normal work and family commitments.  A Healthy person struggled to get it all done.
 
Then I went through four holiday seasons struggling with ME/CFS/SEID.  For two of them, I was bedridden for most of each day.  As is often the norm for ME/CFS/SEID sufferers, I was pretty hard on myself.  All I could think of were the special holiday things that my kids and family weren’t enjoying because of me.  But I couldn’t do anything about it.  So those holidays passed with me needlessly feeling down.
 
Then came a holiday season when I was feeling stronger – not fully well but better.  And of course, true to form, I wanted to make up for the ‘lost holidays’.  Lessons can be tough to learn.  Gratefully, I had people around me and a voice in my own head that said, “Do only what you enjoy and can handle - let the rest go.”
 
Now that I am fully well, our holidays are still scaled down and we all like it that way.  It’s more like a delightful sampling of what the season offers than a forced and frenzied banquet.  We don’t do every activity every year.  We switch it out.  Our gift giving is mostly donations to charities, Yankee Swaps (even with family) and special consumables (wine, soup mixes, teas, etc).  We haven’t sent cards in years.  I’m thinking I might send an e-card this year.  Maybe…
 

How do you get through this season without straining your energy limits and pushing yourself into relapses?  What do you happily forego from the holiday hustle and bustle list?  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


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ME/CFS/SEID Attitude – Find Thankfulness

11/22/2016

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When I sat down to blog about Thanksgiving, I looked at what I had written last year.  I can’t do a better job of expressing how I feel about this holiday and struggling with ME/CFS/SEID 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 SEID/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 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.

And for you and all of your loved ones,
I wish you a warm and Bountiful Thanksgiving,
​
Be Well Again,
Martha


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

11/15/2016

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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

ME/CFS/SEID Distractions – Stay on Plan

11/8/2016

2 Comments

 
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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/SEID 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 ‘To Dos’ – 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 Holidays are fast approaching.  The next six weeks or so will be filled with activities and lists of ‘To Dos’.  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


2 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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