...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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SEID/CFS Vision – Foresight not Hindsight

1/26/2016

5 Comments

 
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We all know the old adage – Hindsight is 20/20.  And it’s so true.  The lessons we learn when we review where we’ve been are valuable.  Unfortunately for many who struggle with SEID/CFS, hindsight often becomes the standard methodology for self-care.  When we’re feeling better, we take on more.  When we’re feeling tired, we stay the course and when we crash, we drop out of our lives for a day or two thinking “I went too far.”  Then when we’re feeling better, we repeat the cycle.  Even healthy people do this as a regular habit.

If you want to fully recover from SEID/CFS, hindsight is too late.  Foresight is where you should be.  I regularly encourage everyone who is struggling with SEID/CFS to keep a daily health record of treatment and activity - Hindsight.  After a while you will begin to see patterns that support or hinder progress toward full health.  These patterns become your best tool for planning ahead – Foresight.    We need to use the past and its information to create a plan toward a healthy future.  Foresight means planning your week ahead.  Putting into place the resources and timing that will support a healthy pattern for you.  If you know that something is coming up that will push you, plan around it.  Ask for help.  Build a structure in your life that gives you the room to recover.
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And when you crash, look for the triggers.  Yes, your first response will be, “I shouldn’t have done that.”  You need to follow that with, “I should be doing this.”  Use what you’ve learned from hindsight to create foresight.  And then live in foresight.  Where is your vision focused?  Pleas 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 Mask – Reveal Yourself

1/19/2016

2 Comments

 
Picture© 2016 TSM
I awoke this morning to a fresh covering of sparkling powdery snow.  It clung to every branch of each tree and hung in clumps on the evergreens.  The snowy carpet was a brilliant white when the sun shone and it disguised every little blemish which had been visible the day before.  It reminded me of when I was struggling with SEID/CFS and I would bravely wear my mask of ‘I’m doing ok’ even though I was hard pressed to hold it together.  I had been taught by others that they were not interested in my illness or didn’t understand it or didn’t believe that I had a real physical illness.
 
It drove me to not talk about it.  I had come to flinch at ‘the looks’ whether they were disinterest, confusion or pity.  Unfortunately, I began to only see those people and under value the people closest to me who cared and who understood.  I would sometimes hide my true situation from them as well.
 
It’s hard to stay the course with SEID/CFS and work your way back to health by watching your patterns and conserving your energy.  You need a few people to be there with you.  Not a crowd – just a few.  When I finally revealed my true situation to a few close friends, the response was supportive and unburdening for me.  I realized how hard it had been to wear the mask of ‘I’m doing ok’.
 
Take a risk with a trusted friend and let them know how you are truly doing.  Or reach out to someone who already knows and check in.  For a selective few, their support and caring can make a huge difference.   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.  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 Recovery Goal – Our Aim is Off

1/12/2016

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If you ask most people who are struggling with SEID/CFS what they want, the answer is usually, “I want my life back!”  What most aim for is normalcy.  The ability to be the person they were before SEID/CFS.  They want their family life, social life, work life and healthy life back.  They want to live again.  They don’t want restrictions and pacing.  They want the whole SEID/CFS nightmare to go away.  And I was no different.  I searched and searched for the magic cure that would get me from nightmare to full health again.

During that search, I crashed and relapsed so many times that I really can’t number them.  It was brutal physically, mentally and emotionally.  Honestly, as my daughter would say, I was a hot mess.  The truth that I finally discovered is that no one can go from the cruelty of SEID/CFS to full recovery in one magic step.  Not even two or three or ten.  And since I’ve been fully well again and I’ve met others who have fully recovered, not one of them ever found an instant cure.  If there was a key piece to their recovery, it was discovered as they recovered – as other symptoms began to receded, it became prominent.

So what’s your recovery goal?  Are you ready to get off the crash and relapse roller coaster?  For whatever reasons, some of us need to ride it longer than others.  When you’ve had enough, reassess your goal and correct your aim.  I finally realized that I needed to get to a pace where I could handle things and not get sicker.  A pace plateau.  Something I could sustain for weeks and not crash.  Then I would try a little bit more.  If I could handle it, I stuck with it for a long time to ensure that I didn’t get sick.  And so on.  If I couldn’t handle it, I quickly dropped back a step and settled in for a while.  Did I like this snail’s pace?  Of course not!  I hated it!  But I finally got my life back.  So where is your aim these days?  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 New Year - Take a fresh look

1/5/2016

2 Comments

 
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It’s a hackneyed part of our culture that everyone makes New Year resolutions which we earnestly pursue for one month.  Then we return to our old habitual patterns.  And every year we resolve not to let that happen yet again.  So here we are.  For many, it’s a desire to improve one’s health.  If you’re struggling with SEID/CFS, the stakes and the rewards are much higher than the average person who just wants to look or feel healthier.  For us, it’s about reclaiming our lives and our ability to be fully functioning and present – to be well again.
 
I encourage you to take a fresh look at your version of SEID/CFS.  Hopefully you are keeping a daily log of your activities, sleeping/resting times, symptoms and medications.  Step back and take an objective look at your patterns.  Look for periods of wellness.  What preceded those periods?  Replicate those patterns.  Look for periods of ill health or crashes.  What preceded those periods?  Don’t repeat those patterns.  Look at your symptoms.  Which are the most debilitating?  When do they flair up?  How can you treat them in order to short circuit the flair up?  Look at your sleeping patterns.  How can you improve the quality of your sleep?  How can you make your bedroom into your version of slumber heaven – light, sound, comfort and sleep aids.  Your daily log needs to be mined for clues as you find your path back to wellness. 
 
If you’ve made progress this year and you’ve managed to shed some of the symptoms that were masking your version of SEID/CFS, awesome!  As you take a fresh look, you may get a clearer view of the key or central issues which characterize your version of SEID/CFS and some insight into new approaches, strategies and clues to your next steps.  It was through this methodical periodic review that I eventually unraveled my version of SEID/CFS and was able to be fully well again.  What can you see in your SEID/CFS patterns?  What will you focus on in this New Year?  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
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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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