...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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SEID/CFS Recovery Goal – Our Aim is Off

1/12/2016

2 Comments

 
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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
Tim Boland
1/15/2016 09:35:21 pm

Your blog this reminds me of just what I want, though perhaps it should be ‘obvious’, there is no amount of money in the world, even a trillion dollars, which is more important than our good health. The Buddha told a story about a man who worked very hard over many years, but he developed an illness of some kind that kept him nearly bedridden. So it was hard for him to even go out to see the beauty of the luxurious gardens he had planted or to fully appreciate the beautiful home he had built.

Each of us has a different story, though in many ways the stories are similar. I read an article today about a marathoner only 33 years old, who had to retire due to feelings of fatigue. When we are doing well, we can drive ourselves though our body likely rebels in smaller ways. But with CFS or fibromyalgia, our bodies reach a point of finding it harder to recover, to regain balance.

It reminds me often Martha, how ordinary ‘illnesses’, like as a youth when I had measles more than once, and mumps ... or having a very difficult bout of the flu. When our bodies have underlying health, we recover though slowly from those illnesses, finally feeling ‘all better’ again. But with those illnesses and colds we discover too, that doing too much too soon often results in a relapse.

From how you describe your journey in and through CFS, and your words about pacing and seeing what works and what does not, it reminds me of recovering from ‘ordinary’ illness, without proper care and rest, doing too much, we relapse. Though with CFS it takes so much more attention, care, rest and truly paying attention to what works in the journey toward wellness. Certainly dedication to this goal helps to ensure a better outcome for our illnesses. My mother used to say ‘patience is a virtue’, how true that is!

Reply
Martha
1/15/2016 10:51:47 pm

Patience and pacing. A successful combo. Thanks Tim!

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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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