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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
 


Comments

laura
01/10/2012 1:43pm

yes, there is a genetic component to CFS - my brother had it for 7 years about 15 years ago....I've now had it for 5 years. No doubt in my mind that there is a genetic marker that perhaps 'enables' you to get sick from this.

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Tim B
01/15/2012 3:56pm

I was told that my mother was sick for some time after giving birth to me at age 38, considered pretty old at that time, even today. She spent quite a bit of time in bed as the years passed but always seemed to have the urge to get up and do things, so she became active in Red Cross and some Catholic organizations.

My dad was, on the other hand, a kind of quiet dynamo and continued to burn the midnight oil ... he told me he didn't like to sleep much because he 'was afraid I might miss something' :) He literally worked seven days a week but at jobs he enjoyed very much, and had good health up until his 91st year.

I remember reading years ago that in each family, there are certain predispositions that can be found. My family had its alcoholism and also on my mom's side, toward diabetes. I've never gotten that and have remained slender throughout my life, I think in part due to my equating diabetes with being overweight. My own experience with CFS, and its onset, is that I was stressed a lot in the two years proceeding and then two key events where I did not listen to my body's signals that what I was doing was just too much. Immediately after a second event when I felt completely drained, I became unusually ill with something like the flu the very next day.

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Martha
01/17/2012 4:47pm

Thanks Tim. Onset of ME/CFS after a severe bout with a flu like illness is common. I am in that camp. Most patients I've spoken with who have the same experience report that right before onset of ME/CFS they were extremely run down, physically vulnerable and emotionally stressed.

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Martha
01/17/2012 4:49pm

Laura, Congrats to your brother for beating ME/CFS. Does his experience help to keep you upbeat? What have you learned from him that you can apply to yourself?

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laura
02/01/2012 9:58am

Well, Martha. My brother is very reluctant to discuss his dark days with CFS. It didn't have a name where he lived and since he didn't have insurance he wasn't sure what was wrong - just that something was really, really wrong. He is good most days now, but I still see him get thrown down a bit when he overdoes it. His wisest words to me were "take care because it never really goes away." Meaning that yes, you can live a normal life again, but don't think that you can push and push the way other people can or the way you used to. Let your body speak.

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Martha
02/01/2012 10:19am

Our Bodies have a lot to say to us if we would only learn how to listen. Your brother's wisdom was hard earned. Thanks Laura


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