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 Emotions - Droughts and Deluges

04/24/2012

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© 2012 TSM
We have been experiencing a drought in New England since the first of the year.  The normal Spring rains which enable the flowering of bulbs and perennials have been absent.  Then last week the weather forecasters were a buzz about the storms moving up the eastern seaboard laden with much needed water.  As the front got closer, things shifted to warnings about flooding and washouts.  And of course I began to think about the constant emotional peaks and valleys I experienced when I was struggling with ME/CFS.

As with all emotions that we actively fight to contain, they are held at bay by intentional shoring up with periods of overspills which always seem to be triggered unexpectedly.  The cruelty of ME/CFS only served to amplify the intensity of these highs and lows.  My first year was full of frustration with the medical community that labeled me as a head case.  With few exceptions I was looked upon as ‘mentally weak’ and in need of therapy.  After a period of permitting that negativity to cling to me, I finally rejected it.  But I was still left with a pattern of extremes where sometimes the skies would dump a deluge of emotions and I would struggle to tread water.  After climbing out of that, I would experience a period of emotional drought when I could stay focused on the protocol and the slow but observable progress toward getting well again.

This Focus helped me to eventually steer away from emotional lows.  How do you manage this aspect of the cruelty of ME/CFS?  How do you shore yourself up?  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 My Version – Ion Channelopathy - Could It Be Yours?

04/10/2012

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© 2002 Nature Publishing Group Marbán, E.
We all understand that the very definition of ME/CFS means that we don’t all have the same disease – just the same label.  We’ve been culled into a symptomatic description of a syndrome that includes many disease possibilities.  No one has the answer that will cure all of us no matter how much we wish it were true.  With that disclaimer out of the way, I’m going to pull out my soap box and write about my version of ME/CFS and what I think was the key to my full recovery.  My reason for doing this is that I feel strongly that some percentage of those labeled with ME/CFS or Fibromialgia have what I had.  If this helps just one person recover, I’m thrilled.

Ion Channelopathy – As part of my eight step protocol I drank an 8oz can of V-8 vegetable juice everyday.  My intention was to add salt to my diet so that my chronic low blood pressure would rise to a more normal level (so please don’t start chugging salt as it can be dangerous).  I was not aware at the time that I was also providing my metabolism with a liquid Ion Cocktail - full of high dose, easily available ions – specifically sodium, chloride, potassium and calcium (the calcium was taken as a supplement at the same time).  If you feel that this may apply to you, you should discuss it with your medical practitioner before undertaking any course of treatment.  Under the supervision of a medical doctor, you can determine any contraindications and regularly monitor your blood pressure.

I wrote up a full description of my thoughts on this for a later edition of my book.  In case you have an earlier version, read about Ion Channelopathy under Further Lessons.

Have you had any experience with ion therapy?  Did it help you?  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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Thankfulness – Sometimes Hard to Find

11/29/2011

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© 2011 TSM
Thanksgiving traditionally generates clichés about thankfulness.  The mantra basically goes like this:  Be thankful for what you DO have, not what is missing.  Most of us would agree with this outlook.  It is better to focus on the positive.  But it isn’t easy to do especially when you’ve been struggling with ME/CFS for a year or for 20 years.

When I was sick, I would allow myself to indulge in some self pity around this time of year but I knew that was totally unproductive and a waste of what little energy I had.  I would then get irritated with myself for my self-centered attitude and so just added more negativity to my load.  But it can be unfair to expect a person who is struggling with a body that can’t handle normal activity to be upbeat, positive and ultimately thankful.

So as the rest of the world around me went about their daily routines, I would look at my life and try to find something to be thankful for.  Mostly, I focused on the few people around me who understood what I was going through and supported me in large and small ways.  I made a point to tell them how much I appreciated what they did.

And after I let go of the negativity toward myself, I realized that I needed to appreciate the work I did all year long.  The work of getting well again.  Sticking to the snails pace recovery, following the protocol when I didn’t want to and being present in my life in whatever way I could realistically handle.

How are you handling thankfulness?  Are you finding things to be thankful for?  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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