Holidays and Illness – How Do We Cope?

12/27/2011

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© 2011 TSM
My apologies for missing my blog last Tuesday but even my hardened 11th grade French teacher would have given me a bye week.  My son had surgery which hospitalized him for six days followed by a readmission due to complications.  During the many days I spent with him wading thru the copious obstacles of our medical system, I noticed all the families who were also spending their holidays in the hospital.  I thought often about how I coped with holidays back in my ME/CFS days.

Basically, I had to abandon all visions of ‘the ideal’ holiday, whatever that meant.  While I was still riding the rollercoaster of denial, my holidays were horrendous push/crash cycles.  Mostly crash.  After I started following the protocol, it was an anguished series of choices to try to stay within my known limits.  Whatever success I had was tinged with a dose of guilt and a tad of anger at the medical system and its failure to unravel the mystery of ME/CFS.  But my holidays did get better as I came to understand my version of ME/CFS and what worked or didn’t.

My son came home last night and we are hopeful that he’s home to stay.  How did you cope with your holidays?  Were you able to manage some balance in your energy expenditure or was it push/crash?  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
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ME/CFS Colored Glasses

12/13/2011

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© 2011 TSM
When you are struggling with ME/CFS, it’s hard to see anything else.  ME/CFS controls your energy, your schedule, your choices, your physical comfort, your day, your night and your outlook.  Everything you consider can be interpreted through your ME/CFS colored glasses with a dose of brain fog.

 For someone with ME/CFS, it’s a necessity.  It’s a survival mechanism.  It’s reality.  And fighting this reality is fruitless.  Just more squandered energy and risked relapses.

Remembering that we have restrictions eventually becomes second nature.  And as much as it totally stinks, it can develop into the way forward.  Acceptance of this second nature or inner ME/CFS voice can bring rewards.  Better choices.  Better days.  Beginning to experience better weeks.

For me personally, it took several knock down relapses before I understood this dreaded voice.  Some days I wanted to throttle it.  The message was one that I didn’t want to hear.  But slowly, eventually, I began to listen.  Do you listen to the cautionary messages of your inner voice?  Are you learning to pace yourself better and avoid severe relapses? 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
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The Holiday Bustle – If We Choose

12/06/2011

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© 2011 TSM
Before I was sick with ME/CFS, 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 under the constraints of ME/CFS.  For two of them, I was bedridden for most of each day.  As is often the norm for ME/CFS 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’.  Ha!  Lessons can be tough to learn.  Gratefully, I had people around me and a voice in my own head that said, “Do what you enjoy and 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 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