...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS/SEID Isolation – Be Connected and Get Help

4/25/2017

2 Comments

 
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I was recently in a remote place with no cell service and no 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/SEID 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/SEID 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/SEID, 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
Tim Boland
4/29/2017 12:10:47 am

Thank you for this reminder, Martha, of the importance of reaching out. In the early days of my illness, when I felt lonely and alone, I would often call the 'care crisis line'. Sometimes I would reach a person who listened well, sometimes the person did not seem so connected, so I continued looking and found real friends, such nice people, on YouTube. Now for those who may wish to find a place like YouTube used to be, there is a site called uploadstars.com. It is my own private niche, I don't have family on there or even friends who I know in my area, it is my own world away from struggles and the strife of everyday life.

I love your blogs because it is a reminder that you have been there, and with determination and your finding a way through, have shone a light on the possibility of recovery. There are others who have taken this difficult journey and have healed over time. That to me, is truly inspiring.

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Martha
4/29/2017 04:45:02 pm

WE are all in this together. No matter where we are on the path to being well. I'm here to dispel the myth that no one ever gets fully well again. I'm one and there are many more. Thanks Tim!!

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    Hello,  I'm
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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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