...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Opposite Viewpoints – It’s a Wide Waste Basket

6/10/2014

5 Comments

 
Picture© 2014 TSM
I recently received two diametrically opposed e-mails on the same day.  Both were written from the heart and came from caring, passionate people who have been dealing with ME/CFS for way too long.

The first was from a patient who has been sick for decades.  Yes, decades.  I can’t even imagine where or how I would be after dealing with ME/CFS that long…  She related her steadfast struggle to regain her health trying every promising treatment from the reasonable to the absurd.  At this point, she is
managing to live a somewhat productive but restricted life with push/crash
cycles and wrote to express her objection to my viewpoint that “you don’t have
to live with it”.  Personally, she has never met anyone who has recovered and feels that it is cruel of me to mislead patients into thinking that they can recover. 
I heard her frustration.

The second was from a former patient who was inspired by my book.  Yes, former.  Like me she had been sick for about four years and like the first patient above, also had worked steadfastly to regain her health and recover from ME/CFS.  Now healthy, she was feeling the desire to “give back” to the CFS community and talk about her recovery.  But she was disheartened by the number of ‘lifer’ blogs and forums on the internet where patients were insistent about the incurable nature of ME/CFS and found the negativity to be a turnoff.  I heard her frustration too.

Both of these viewpoints, and all the perspectives in between, need to be expressed and heard. I’m hopeful that we can be part of that conversation and in the process contribute to some positive outcomes. What’s your take on recovery from 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

5 Comments
Tim Boland
6/10/2014 03:25:26 pm

For many of us, it is very difficult to see or understand another person’s journey, our journey may feel like the only one, the only possibility. So for the person who has struggled for many years and has not recovered from CFS or another illness, or only partially recovered, that is that person’s truth.

Yet for another person, following your plan or potentially another plan which brings very positive results, and experiencing a recovery to wellness, from that person’s perspective, it may seem possible that this may be the ultimate outcome for every person.

I remember when I first became truly ill, and one woman absolutely refused to believe a story I related to her of a woman I had read about in the 80s, a woman who had been diagnosed twice with two different tests for HIV, yet she recovered. The doctors were in such disbelief that they said that, after her recovery, the test results which in the beginning showed positive for HIV must have been wrong! Imagine trained professionals not being able to accept a recovery even when new testing showed no sign of this virus, simply because this outcome at that time was so rare! Such is the power of our strong beliefs, even despite seeing evidence to the contrary.

The woman with HIV intuitively sensed that she needed to change her life dramatically in order to become well, much like what you decided, Martha. She fortunately had a friend who had a cottage near the ocean where she was able to be completely alone, where she had little to no stress. She was able to let go of many things which had tied her for too long to a too stressful life style. She changed her diet to a very healthy one and started doing some body awareness, and even though in the beginning she experienced much pain, she would walk just to the mailbox, then very gradually, to walk just a bit further each day when she could. Over time, by changing her life so much, she was able to experience a full recovery.

Each of our bodies is different genetically, our temperaments, even our will to truly change ... the kind of change which can be life altering. Perhaps not every single person can or will experience a full recovery, yet as one of your readers noted, it helps greatly to come to a place like this, which presents the real possibility of change and recovery, which encourages growth. Just knowing that recovery IS possible can make such a huge difference.

I truly empathize with the woman who has for decades tried to become well. I feel this way at times too. It is important to remember that not every person’s journey is going to be exactly like our own, other people may well have experiences in recovery which are different from those we experience ourselves.

Reply
Martha
6/11/2014 01:27:19 am

Thanks Tim! For me, I am present in this community because I want people to know that recovery from ME/CFS is not a myth.

Reply
Tim Boland
6/19/2014 02:52:41 pm

Thank you Martha, your blog continues to inspire me, to give hope and I know that recovery is definitely possible. Yesterday I went to have my haircut, the woman asked how I was and I told her better, that I belonged to a blog and that your advice has helped me to see the way toward the discipline necessary and the steps which can lead to recovery and the importance of pacing.

Virginia
6/26/2014 04:27:21 pm

Thank you for sharing these various perspectives. I need to refresh myself with your book again. Recently I read some articles about medications which are helping some with CFS, yet they are not available to all and I felt frustrated. It's time to focus on things I CAN do today which might help my condition or quality of life. Thanks for your experiences!

Reply
Martha
6/27/2014 12:55:49 am

ME/CFS is such a cruel disease. And we don't all have the same illness just the same label. And very few in the medical profession actually understand the syndrome. So as Virginia has reminded us, we each need to understand our own versions of ME/CFS to take control of what we CAN do to get on the path back to wellness. Thanks Virginia!

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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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