ME/CFS Pacing - Truths and Miss Queues

05/08/2012

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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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ME/CFS Memory – Write It Down

04/03/2012

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© 2012 TSM
As I age, my memory seems to fail me at unexpected times.  I can’t recall the name of a flower that I’ve know for a decade or the name of a street that I’ve driven a thousand times.  Recently, I couldn’t remember the name of a friend’s daughter and I wrestled with my memory to pull it up as I stood there with a blank stare on my face.  And of course it reminded me of the brain fog I experienced daily when I struggled with ME/CFS.

During my ME/CFS days, I would be in conversation and the entire topic and my thoughts would slip away into an awkward silence.  Trying to pay bills or add up simple numbers was painstaking.  But most of all, I would loose track of entire days or weeks.  I couldn’t recall the simplest timelines.  And I struggled to get any sense of progress until I made the commitment to write it down.

Ok, I admit to having a mantra about keeping a Daily Record.  And it stems from the realization that it was my daily record that over time gave me the clues to My Version of ME/CFS.  I encourage everyone who is struggling with this cruel disease to faithfully keep a record of sleep, activities, rest periods, food and medications during the course of each day and night.  It takes about five minutes a day to write it down in a simple, easy-to-scan format.

What kind of record do you keep?  What information has proven invaluable?  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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Personal Data - What To Collect

09/27/2011

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© 2011 TSM
So what kind of data do you collect?  At the time I started recording data, I was housebound and only out of bed for a limited time each day.  My first health record was a few lines on a note pad which contained a quick look at one day.  Here’s an example:

Oct 14    Slept 10-7am   10mg Elavil   75mg Voltarin – twice
Ate and helped get kids out door
8-10 rested
10-12 slept
12 ate
1-3 rested
3-4 did some straightening
4-6 rested
6-7 kids and supper
Rested - everyone to bed

I have seen many examples of daily health records on-line – even specific to ME/CFS – which I felt were over the top with data.  Some were one or two pages of data PER DAY!  Honestly, unless you have sophisticated software to catalogue and analyze data, TOO MUCH data can be overwhelming.  And that doesn’t compliment brain fog.  For me, the entire idea behind taking the time to collect personal data was to give me something to help see the patterns and thus the successes and failures.  By having just enough data focused on each day, I was able to flip back thru the pages and get the trends.  Do NOT collect data in a narrative style as in sentences.  You won’t be able to scan back thru in order to quickly glean the data points relative to what you’re trying to pattern.  But if you have the energy, keeping a separate journal can be a good mental health practice.  

A daily health record doesn’t have to be a precise log in the formal style of a white lab coat with a pocket protector.  In the beginning, it can be spare.  As you begin to use the data, other info points will become obvious to collect per the symptoms or strategies you select to focus on.  What data do you collect?  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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