...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Stop – When we had other plans

3/27/2018

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Recently we were driving along with a schedule for the day.  Then bang.  We had a tire blow out.  We were able to safely get to the side of road but that one event shot holes in the plan for the day.  As we began to assess the condition of our spare tire and whether all the parts of the jack were in the truck, I was reminded of how ME/CFS suddenly forced me to change my plans.

There I was, tooling along with my life plan and then suddenly – bang – I was so ill that I was bedridden.  And after going through the seemingly endless screening process, I was diagnosed with ME/CFS.  Not great news.

Back on the side of the road, we thought we had everything to change the tire and started in.  Then we realized that the jack crank was missing.  Great – that meant that we had to raise up the car one half turn at a time.  As I knelt by the car, inserting the lug wrench, turning a half turn, removing the lug wrench, moving it back to the other side, then reinserting and turning a half turn – over and over and over – I kept thinking about how ME/CFS required me to invent tools to get well because the normal methods didn’t work.  And getting well was agonizingly slow.  And repetitive.  And repetitive.  And really repetitive.

So having that flat tire abruptly changed my plans and it took more time than it should have because we didn’t have the right tools.  And getting ME/CFS abruptly changed my life plans and it took more time to get well from ME/CFS because we needed to invent the right tools.   What tools are you inventing?  What tools are you learning from others?  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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ME/CFS Invisibility – You Are Not Crazy

3/20/2018

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I was standing at a deli counter waiting to order and there were no numbers to take.  So I tried to politely keep track of whose turn it was to be served.  Predictably, a few of the people just didn’t want to see me.  And of course, it reminded me of how invisible I was when I was struggling with ME/CFS.
 
Most of us have suffered not only with the frustration and illness of ME/CFS but with the non recognition of this disease by the medical community and the people around us.  According to them, we don't look that sick and we don't test sick so we aren't physically sick...  And when we’re treated that way, we tend to withdraw.  Combine that with the physical and mental disability of ME/CFS and it’s a combination that leaves us isolated and ultimately invisible.
 
And in that isolation, we begin to question our own mental capacity.  Do not listen to those negative, degrading messages!  You are not alone in this and you are not crazy!  Many people are in this ME/CFS boat struggling to be seen and to be well again.
 
For me, I was able to find a few people who would listen and help.  It made me feel visible again.  How do you deal with the invisibility of ME/CFS?  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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ME/CFS Sadness – Snowy Days Made Me Happy

3/13/2018

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It’s a cold snowy day in New England.  It's the third storm in a conga line.  So today, as I settled in for a less active indoor day, I started thinking about my struggle with ME/CFS and those snowy days.  One might think that like some people, snowy days would have seemed dreary and sad back then.  But the opposite was true.  Snowy days made me very happy.

Why?  When I was struggling with ME/CFS, sunny warm days made me miserable.  I wanted so much to be out and going about my life.  And lovely days were a tough reminder that I was too ill to participate in my own life – in anyone’s life.  Those days seemed twice as long as normal.  They dragged and dragged and dragged on some more.  Those days were depressing.

I must admit, somewhat ashamed, that cold snowy days made me feel like other people might have their days limited as mine were.  Not with the physical symptoms of ME/CFS but the limitations on mobility.  The restriction of activity and possibly some of the isolation.  I felt like other people were stuck in it with me.  A sort of warped sense of misery loves company.  And this made me happy.  OK, not one of my best moments.

As I began to understand that I needed to get off the ME/CFS roller coaster and focus on a real recovery plan, this weather influenced attitude began to change.  My daily approach to healing became a matter of choice as I was no longer a victim of ME/CFS but rather someone who was on an intentional recovery path.  Nowadays when I’m trapped indoors on cold snowy days, I like to make the best of it and imagine I have lots of company.  And a nap is nice too.  How do you relate to cold snowy 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
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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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