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ME/CFS Perception – The Crazy Stigma

1/21/2014

4 Comments

 
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Over the weekend I was talking with someone about how people change when they go through personal struggles that challenge them to their core.  By comparison, other difficulties in everyday life are less stressful and seem easier to handle.  And of course I began to think about my ME/CFS days and how much I have changed – maybe even gained – in my more robust ability to weather the
tribulations of a healthy life.

This person didn’t know me when I was sick and I was about to mention my ME/CFS struggle but I hesitated. The stigma of ‘mental weakness’ or crazy has always been attached to ME/CFS and even when I was well again, I would see that association flash across a persons face whenever I told someone that I was once sick with ME/CFS.  Suddenly, even though they had only seen me healthy, I was dropped down a few notches in their estimation.  I became less then
whole.  Damaged with the potential to be weak or needy.  Maybe even a burden.  So I hesitated.

Then I thickened my skin and plunged forward, knowing that the more we talk about ME/CFS, and the more we engage with the main stream, the better the odds of getting to the answers for this cruel disease.  And as I voiced that I had once been bedridden with ME/CFS, the response was OK. Better than I expected but it was still tinged with a bit of stigma.  And it renewed my determination to be part of the conversation because so many of those who are struggling with ME/CFS frequently disappear from
view.

Are you getting the crazy stigma when you talk about ME/CFS?   How are you dealing with it?  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

4 Comments

ME/CFS Vision – Foresight not Hindsight

1/14/2014

2 Comments

 
Picture© 2014 TSM
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 ME/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 ME/CFS, hindsight is too late.  Foresight is where you should be.  I regularly encourage everyone who is struggling with ME/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.

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?  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

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
    Picture
    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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