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ME/CFS Recovery Goal – Our Aim is Off

1/7/2014

2 Comments

 
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If you ask most people who are struggling with ME/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 ME/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 ME/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 ME/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.  I if 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
1/11/2014 02:02:37 pm

Thank you Martha for another illuminating column. You have the ability to see things clearly and then articulate them in a way which can be understood easily, and the unique perspective of someone who has had this illness and then through carefully thought out ‘steps’, slowly recovered.

The past few days have been a lesson. I had some upsetting feelings come up with a social networker, then a friend came up and I was finally able to ‘get some things off my chest’, which fortunately he listened to. And I was able to voice some deep frustration I’d had in dealing with a business associate.

I could feel the tension building in my neck and then my back, and at one point, I told him that I could feel myself becoming very tense and perhaps I should calm myself, but I pushed ahead. Why is the human being so prone to push ahead when we often know better. Our bodies tell us and our minds and emotions too.

That day I had one of the worst days I’ve had in some time, and realized even more deeply how important it is for me to stay as calm as possible, to not get to stressed and to listen to my body’s sense of things. After that I rested a lot, slept well last night and overall am much better today.

Perhaps for me I need to let myself off the hook at times too, to pay attention but not be too hard on myself when I do something beyond what I should do. And of course pace.

Reply
Martha
1/12/2014 01:35:52 am

Everyone who has read your comment is nodding in understanding. We all recognize ourselves in your experience over the last few days. Good catch and recovery. Thanks Tim!

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    Hello,  I'm
    Martha Kilcoyne

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    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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