...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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SEID/CFS Plan – Only Keep Your Successful Strategies

7/28/2015

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Picture© 2015 TSM


I learned a new card game over the weekend with a specific deck that contained resource, action and reward cards.  The premise of the game was to start with a few cards and then slowly, through the gameplay, build a personal deck of select cards that you thought would be successful in winning the game.  On every turn you had to make choices about what to keep, what to acquire and what to aim for.  After playing three hands, of course I began to think about SEID/CFS and how I had used a similar plan to get well.

After struggling for almost two years, only getting worse, I finally decided that I needed a better plan than my daily ‘how do I feel today?’ approach with the hope that by some miracle I would walk away fully recovered.  FYI – I’ve never heard of this actually working for a SEID/CFS patient.  I decided that I needed a real plan.  One made up of a handful of strategies that had actually improved some aspect of my illness.  Over time I collected a record keeping strategy, a sleep strategy, a rest schedule strategy, a provider strategy, a nutrition strategy, a supplement strategy and a network for help strategy.  Each strategy alone wasn’t going to get me well by itself but as a complementary set of strategies I was able to not only make measureable progress but eventually return to full health.

In essence, I built a personal deck of strategies which I played each day much like the new card game I had learned albeit the stakes were much higher.  What strategies have worked for you and are in your personal SEID/CFS plan deck?  What strategies have you discarded?  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

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SEID/CFS Pacing – Keeping the Beat

7/21/2015

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Picture© 2015 TSM


I was recently playing drums with a small group of less experienced drummers and what started with a base rhythm devolved into a less than pleasant cacophony of noise.  If you’ve ever sat in on a drum circle, you know exactly what I mean.  To solve this problem, the leader needs to lay down a basic simple beat and hold it.  It gives everyone a point of reference to play off of and to return to and it keeps the group cohesive.  Experienced drummers already know this and learners usually pick it up when the leader points it out.  When you’re struggling with SEID/CFS, there’s no leader to set the basic beat.

When a large mother drum is present, several people sit around it and hold down a beat – sometimes it’s a heartbeat.  It sounds like an actual heart beating – boom, boom, pause.  Boom, boom, pause.  Just like the line you’d see scrolling across the screen of a cardiac monitor.  Two peaks followed by a flatter line.  It’s all about the underlying rhythm - the natural pacemaker.

Unfortunately for SEID/CFS patients, it’s a challenge to keep the basic beat – the pace that will consistently get us from day to day without being caught up in a push/crash cycle.  It’s a matter of fine tuning.  Collect data, make observations, find successful patterns – Repeat.  Repeat, Repeat, Pause.  Repeat, Repeat, Pause.  And eventually Repeat your way back to health.

How do you pace to a basic beat?  What strategies have worked for you?  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

SEID/CFS Emotions - Droughts and Deluges

7/14/2015

2 Comments

 
Picture© 2015 TSM


We have been experiencing a long dry spell in New England.  The normal spring rains which enable the flowering of bulbs and perennials have been miniscule.  And we’re well into summer heat and still not much rain.  Then last week the weather forecasters were a buzz about the storms moving up the eastern seaboard laden with the 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 SEID/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 SEID/CFS only serves 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 and to avoid riding the drought and deluge roller coaster.  How do you shore yourself up?  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

SEID/CFS Loneliness – Don’t Get Left Out

7/7/2015

5 Comments

 
Picture© 2015 TSM

I recently missed out on a family gathering due to miscommunication and was feeling left out.  It brought back some of the loneliness I used to feel due to isolation and incapacity when I was struggling with SEID/CFS.  My energy levels then were severely limited and I had to be so careful about what I could handle without a setback.  In the beginning, it really ate at me.  It only served to put an exclamation point on all that I had to give up due to SEID/CFS.

I allowed it to bother me for an unhealthy period of time.  And loneliness can beget more loneliness and feeling sorry for yourself.  It can turn into a dark hole.  Admittedly, I did some time there.  It did not serve me well.

Eventually I realized that I had not been communicating clearly about how much I wanted to participate and how much I could handle.  I was making a lot of assumptions about what others meant when they said something and about what they were thinking.  A critical mistake that healthy people make every day.  So I started to let my family and friends know that I missed spending time with them.  And when there was a gathering I was careful to communicate how or if I could participate.  Escorted cameo appearances started to become the norm.  Sometimes I would save up my energy for a few days just to be there.  The smiles, hugs and well wishes were uplifting and a balm to my isolation.

So if you’re feeling left out, up your communication game.  How are you managing your ability to visit with family and friends?  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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