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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ME/CFS Feeling Empty – Sleep Depravation

02/01/2012

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© 2012 TSM
I haven’t been able to sleep much since last Thursday.  My mother-in-law, who we were very close to, suffered a major stroke and then struggled mightily for a few days before she passed away on Sunday.  With our hearts broken, we’ve been wading through all the ‘must dos’ as we prepare for her funeral on Friday.

And night after sleepless night, of course I began to think about ME/CFS.  Yesterday, the exhaustion was so pervasive that I had a mental flashback to the lowest days of my ME/CFS years when even holding a glass of water was beyond my strength.  I tried to blog yesterday but the brain fog was so thick that I couldn’t remember my thoughts for more then a moment or two.  It was a long day of running on total empty.  And I thought often about those who are struggling with ME/CFS and it strengthened my commitment to be part of the conversation.

Blessedly, I slept for 5 hours last night.  Even my active, mourning brain couldn’t keep my body from finally getting some REM rest.  This morning I feel a little more energy and a great deal of Gratitude that ME/CFS is a nightmare from my past.

Wishing everyone the strength and opportunity to regain their health.  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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Perspective – Is Our Health Memory Accurate?

11/15/2011

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© 2011 TSM
Recently I spent some time with an elderly aunt in her 80’s.  As I watched her slowly move around with the support of her cane, struggle to see clearly and wrestle with recalling conversations, I was thinking about the slow unraveling of health that we face as we age.  And I clearly recalled the similar frustrations that I felt with my low level of functioning when I was sick with ME/CFS.  As it was with me, and I would image would be true of most, my memory of what it felt like to be fully healthy was compromised.  I had been ill with all the fatigue, pain and brain fog for so long that I no longer had an accurate recall of what it felt like for me when I was able to fully function in my old busy life.

And it was also true of my aunt that she had adjusted her memory of what it felt like to be healthy to accommodate her declining functionality.  She would say that she ‘felt well’ even though we could observe this to be inaccurate.

As I gradually began to recover from ME/CFS, I would report to those who asked that I was feeling healthy again.  Then a month would pass and I would have to say to the same person that I had been wrong.  Now I was feeling even better and was healthy again.  Honestly, this uptick in health went on for about six months.  It wasn’t until I was fully well again that I remembered what it was truly like to feel strong and ‘healthy’.

By definition, for ME/CFS patients, the chronic nature of the disease adds to the possibility that we will remember an inaccurate perception of what it feels like to be fully healthy.  How long have you been struggling with ME/CFS?  Do you think your memory of how it feels to be fully healthy is accurate?  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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