...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Lost Opportunities? – Just Postponed

8/28/2018

2 Comments

 
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A few summers ago, I spent a weekend with my niece and her young family at the lake.  My grandniece was three and was so much like my daughter was at that age – the bright smile and giggly laugh.  The difference is that I could play with her, dance with her and even pick her up.  When my daughter was a baby, I was in the depths of ME/CFS and couldn’t hold a glass of water let alone a fifteen pound baby.  I missed my daughters’ time as a baby and toddler.  Even when she was three, I was still unable to pick her up or do active play with her.
 
Did I miss out on an experience that I can never get back?  One could look at it that way.  And of course, I can’t get it back with my daughter.  But spending time with my grandniece was such a wonderful gift.  It was like recovering that lost experience.  And my daughter was there too.  She had just turned twenty-two.  It was a joy to see her holding her cousin on her hip and playing with her.
 
If I had tried to ‘do it all’ with my daughter, I know that I would still be struggling with ME/CFS.  It had such a profound hold on me that it took dedicated focus, to the exclusion of all else, to get well - even the joys of my daughters’ babyhood.  I did find ways to enjoy her and be her Mom but they needed to be energetically limited.  And I would do it the same again because now, and for the last eighteen years, I’ve been a full participant in my life, her life and the lives of all my loved ones.  So now I plan to see my grandniece as much as possible and revel in this new opportunity to recover something that was just postponed.

 
Are you balancing choices that might be missed opportunities?  Are you planning ways to recover them later?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!
 
Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,
Martha

2 Comments

ME/CFS Brain Fog – Write it Down

8/21/2018

0 Comments

 
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One morning recently, I woke up to thick fog blanketing the yard.  It was so dense that it reminded me of a night last spring when I was driving home and the lingering snow on the ground was a few inches thick.  With temperatures in the mid 30s, there was a wall of thick fog hanging over the snow and drifting across the roads.  In high school science class I learned that sublimation is the transformation of physical matter directly from a solid to a gas without ever becoming a liquid.  So the night fog was the result of the frozen snow skipping over water and going straight to cloud vapor.  And it reminded me of the frustrating brain fog I had when I was struggling with ME/CFS.
 
Kind of like the snow, my brain seemed to skip over the natural fluidity of conversations - the ebb and flow of ideas exchanged with another.  Or the transitional thoughts needed to get from a concern to a possible course of action.  Concrete thoughts wouldn’t develop and instead slowly leaked out of my head like a balloon with a pin hole.  I couldn’t remember what someone said a moment after they said it.  It seemed to dissipate into the air without ever registering in my brain.
 
After denying the reality of my memory struggles for awhile, I finally came around and tried to cope with it.  I started to write things down as I spoke with people and it helped me to keep the train of thought going.  And when I was trying to think through something on my own, I also wrote it down.  It felt stupid at first, but when it began it help, I appreciated the sense of accomplishment that resulted.

 
How are you coping with brain fog?  What strategies have you developed?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,
Martha

0 Comments

ME/CFS Energy – Intermittent

8/7/2018

5 Comments

 
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An intense sequence of squall lines loaded with lightning and thunder recently swept through our area and I hope that all in its path were safe and able to ride out the storm.  We now have our power back for good.  During the height of the storm we lost and regained our power intermittently for about 5 hours.  And it created uncertainly that kept resolving and then degrading over and over.  It reminded me of how my energy waffled during my early struggle with ME/CFS.
 
Some days I couldn’t walk across the room without pain and exhaustion.  Then, miraculously, the next day I could walk down stairs and even wash dishes feeling energized and ‘normal’.  Of course, the next day, I struggled just to find the energy to sit up and eat.  Then I would feel decent for two days.  Then a crash.  The negative cycle repeated over and over.  It was beyond frustrating, it was infuriating.  And I felt helpless and victimized.  No one had any answers.

 
The intermittent energy felt by every patient who struggles with ME/CFS makes it a cruel disease.  When I finally started taking control of my energy expenditures, I began the path to recovery.  How do you keep your energy levels consistent?  What are your strategies?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,
Martha


5 Comments
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    Hello,  I'm
    Martha Kilcoyne

    Welcome
     to our Community!

    After struggling with CFS for four years I am fortunate now to be fully well and making choices about how I want to live my healthy life.  One choice is to be an active part of the CFS community and to offer one voice from the fully recoverd to the dialogue.  I'm glad you're here!   For more about me, here's my Bio.

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