ME/CFS Recovery – A Mine Field of Variables

03/27/2012

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© 2012 TSM
If everyone who was suffering with ME/CFS were to write down of all the variables that affect them, it would be a long list.  Life in general challenges us but add to that all of the knowns and unknowns of ME/CFS and it can be overwhelming.  During the time when I was bedridden with ME/CFS, I must admit that for a good number of my waking hours each day, I cranked over that list.  I allowed it to feed on the precious little energy that I had and erode my will to get well. 

It was when I finally jettisoned the list and began to focus on one or two variables at a time that my health started to improve.  Instead of wandering through the entire mine field where it was certain that one of them would blow up, I carved out smaller areas with a limited scope.  Usually this would include a shorter timeframe to focus on and only a couple of life’s issues to act on.  It didn’t always work but most of the time, it allowed me to intentionally focus the energy I had on things that were realistically within my reach.

How do you keep yourself within a realistic window?  What strategies have worked for you?  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 – Are Genetics a Variable?

01/10/2012

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Sometimes realizations ooze quietly into your life and you need to look behind you to actually see them.  Sometimes they arrive via a lightning bolt epiphany.  My latest was the latter.  Over the holidays, my mother visited and we enjoyed many family conversations but the trigger came when she looked at a picture on my desk of her mother (my grandmother).  She hesitated, then asked, “Was that taken before or after she was sick?”  It took my brain cells a moment or two to remember that my grandmother had been sick for many years long before I was born.  She struggled to recover from either malaria or typhoid (my mom wasn’t sure which as she was a little girl at the time.)  “She was in an infirmary for many years because she was so tired and couldn’t handle the family and all the farm work”, my mom continued.  Click.  I then asked, “Mom, weren’t you sick for a long time after your last baby was born?”  “Oh yes, I just couldn’t get my strength back.  I was so tired all the time.  It took a couple years before I got strong again.”  I was the little girl at that time.  Click.  Click.  Click.

With a background in the scientific method, I’ve never been one to make gross assumptions based on anecdotal evidence.  During my struggle with ME/CFS, we poured over the published literature looking for clues to my illness and trends in the epidemiological write ups of mass illnesses (there was virtually no research to be found specifically on ME/CFS).  One piece that stuck with us was a gut certainty (now that’s scientific) that genetics had to be part of the puzzle.  Not the whole, but a variable in why my illness progressed as it did when others around me recovered and went back to their normal lives.

And as those Clicks got louder, the image of the other sick woman with the swollen belly and dark raccoon eyes in the doctor’s waiting room came back to me.  Our onset and illnesses were mirror images.  So once again, this certainty of a genetic component clicked into place.  This time it had three generations of anecdotes but still no scientific data.

Do you have any gut anecdotal feeling about the underlying causes of your version of ME/CFS?  Since it’s a wastebasket diagnosis, we could all be right.  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
6 Comments