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© 2012 TSM
This spring in New England has been a strange cycle of early prolonged hot weather followed by several weeks of cold, damp weather with a few nights below freezing.  And like most things that respond to warmth and sunlight, I was out in my garden in early March, clearing the flower beds of winter debris.  All of my perennials were sprouted and many already budding out way before their normal timeframe.  Now, after a few frosts, I look about and see damage on many of the flowers and shrubs.  And of course it reminds me of my successes and failures with pacing when I was struggling with ME/CFS.

It was so difficult to recognize the difference between solid progress where I could take the next step toward recovery and a good day which needed to be repeated at the same level for a while.  Of course my hope and emotions were almost always in the ‘this is it’ camp.  Unfortunately, most of the time I needed to stay where I was and follow the protocol until this new level of health was consistently repeated.  In the beginning, I jumped forward and was almost always rewarded with a set back.  Some more severe than others. But over time, I finally began to listen to my body’s call for restraint and to review my daily log for patterns that pointed to whether or not I was ready.

I admit that it took a strong hold on the reins at times when I really wanted to unleash a cantor.  Do you struggle with pacing?  How do you deal with miss queue days?  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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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