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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Patterns - Are They Obvious?

09/06/2011

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© 2011 TSM
For many, Labor Day is the gateway through which we return to familiar patterns after the long warm days of summer.  Hopefully, we’ve spent some time in the outdoors and had a break or two from the norm.  If you’re struggling with ME/CFS, the norm is the inability to function as a healthy person.  So the long days of summer may have only served to put an exclamation point on your disability and frustration which could have resulted in a push-relapse cycle…

As we return to normal patterns, it is obviously subjective.  What a typical day looks like for one ME/CFS patient, can be completely different for another.  But as each patient looks back over the past year, it would be wonderful to see improved health since last September and disappointing to feel worse.  Which applies to you or those you care for?  How do you get on the improved track?

For some, patterns are the key.  Unique patterns for each patient.  Specific to each patient and situation.  The key to recognizing patterns is keeping a detailed health log.  As resistant as some may be to this idea, it is a focused way to get a handle on your unique version of this wastebasket diagnosis of ME/CFS.  A patient’s memory is impaired and often useless for holding the train of thought during a conversation.  How could the same person hold a week of patterns in his/her head?  And then have the recall to see progress over a year?

If you are a patient and you are not keeping a daily health record, start today.  Start right now.  Get a pad of paper, a spiral notebook, the back of an envelope – just start writing down a brief summary of your day.  If you have been keeping a record, what seems to be the most valuable information in your record?  What is missing and would help to know?  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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