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ME/CFS Attitude – What Others Say

9/24/2013

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When you’re struggling with ME/CFS, it can be a daily challenge to keep your own negative attitudes in check.  It’s all too easy to fall into the trap of wasting precious energy grinding about the things you can’t do, the thoughts you can’t keep straight and the important people in your life for whom you can’t be present.

It becomes even more challenging when you have to deal with the negative attitudes and insensitive comments of others.  One group says ‘you look OK to me’.  Then there are the ‘doubters’ who look at you as if you’re either physically lazy or mentally weak.  And then you face the curious crowd who seem interested in your illness only to the extent that they want to tell you about themselves or their sick friend.  It’s hard to know what to say without being irritated (only to confirm their assessment of your mental weakness) or rude which can alienate people whom you otherwise value in your life.
 
Fortunately for most, there are the steadfast family members or friends who get it and want to support your path back to health in
whatever way they can.  And even these caring people can say the most insensitive things at times.  When I heard these comments, I donned my writer’s thick skin which I acquired as the result of many tough critiques.

 
What do you say when people make insensitive comments?  Do you react at all?  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 Halt – When we had other plans

9/10/2013

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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.  How are you handling the sudden halt in your life plans?  What tools are you inventing?  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 Isolation – Be Connected and Get Help

9/3/2013

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Last week I didn’t post a blog because I was in a remote place  with no cell service and intermittent access to WiFi.   At first it was bliss.  No  phone ringing.  No text messages requiring immediate response.  No daily diet of news feed.  Just quiet and my own thoughts.  But of course, I eventually felt a bit isolated and disconnected.  It reminded me of when I was struggling with ME/CFS and how alone I felt at times.

We are trained in our culture to be independent.  To be strong and capable.  The old ‘boot strap’ adage comes to mind.  We believe that people who are dependent are weak.  They are inadequate.  We somehow learn not to ask for help.  Then we find ourselves in a situation like ME/CFS where we need to ask for help and we can’t.  We don’t want to be a bother or impose.  We don’t want to appear weak or needy.

So, we find ourselves struggling with ME/CFS, which is a cruel disease that leaves us feeling better one day and crashing the next, and we’re fearful of asking for the help – which could be key to our recovery – because we’ll be seen as weak and ‘just depressed’. Doubly cruel.

It’s important to take a good look around and see those in your life who could help.  Make an effort to connect.  Make an effort
to explain what’s happening to you.  If you’ve read my book, give it to them and ask them to read it.  If people don’t understand what you’re going through, it’s hard to support you.

One lesson I learned after I was fully well again – people who cared, who wanted to be connected and who wanted to help had no idea what to do.  They need your help to understand and to know how to help you.  Divide up your needs into smaller pieces so it won’t be too much for one person.  What are you doing to be connected and to get help?  What are your strategies?  What works for you?  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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