...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Hope – Paired with a Wellness Plan

5/19/2020

2 Comments

 
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While I was in the depths of my struggle with ME/CFS, I had the opportunity to be seen in a Boston clinic where I thought they were familiar with ME/CFS.  The first doctor I saw there, after my complete lab work up and physical exam, was truly unhelpful.  He told me that there was nothing physically wrong with me and that I should go home and “have hope”.  At that moment, he was the recipient of all the rage about having ME/CFS that was pent up inside me.  His eyebrows may still be singed.
 
When I finally started working with another doctor at that clinic, and treating myself like a case study of one, I began to see slow but real progress.  It was then that I opened up to a collaboration of hope paired with a wellness plan.  As I worked through my physical illness and worked with my daily patterns, I also began to work on my attitude.  Prior to ME/CFS, I was an optimist by nature.  But ME/CFS had tainted my outlook.  It was beyond frustrating to be struggling with a physical illness that almost no one understood or even acknowledged to be real.  So, I began an intentional effort to raise my spirits and have some hope for recovery.  As I look back now, this was only possible because I was beginning to see glimmers of physical progress and I had determined to devote my immediate future to being well again.

 
I understood that hope without a focused effort to be physically well is equally as ineffective as a wellness plan without hope.  For me, they needed to be paired.  How do you balance your physical recovery plan with your outlook?  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 posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,
Martha


2 Comments
Tim Boland
5/27/2020 11:40:30 am

I remember well from your book Martha, your agitation toward the doctor who was on many levels clueless about this illness. This is my second 'bout' with CFS, the first happened in relation to a difficult divorce I was going through. With that one, I just remember feeling that my energy level was not what it should be and a feeling of being afraid of working more than an hour or two at a time. I wasn't sure what would happen if I did but had an intuitive sense that I should not, and was for some time very good with that.

I went to an older doctor who called what I had 'chronic fatigue' but not the syndrome part, for which I am grateful as I tend to obsess at times with any condition which sounds serious.

I expressed my frustration with this doctor, that I did not want to continue to be in this physically fatigued situation and he said that for some people, it was something that just continued with them. I felt angry on hearing that. I decided that I was not going to settle for that.

I did some introspection and decided that I was going to give up eating sugar, and start taking regularly a very good multi vitamin. I stuck with it but I did feel results, though very gradually. I used to think that when I had recovered from that first bout, I came back to about 95% of the energy I had before, and that I didn't need to push myself as hard as I had in the past. For the most part, I have been good about managing my energy from an early age, but the pressures sometimes of what we feel we 'have to do' turns into 'well, maybe I do not have to do everything I would like to do', especially in the span of a single day.

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Martha
5/27/2020 01:47:25 pm

Tim, the process of figuring out your illness sounds familiar. Many of us have gone through similar ups and downs, starts and stops. What matters is that we don't give up or give in to the narrative that we have no control over any part of this illness. Or that we will always be sick. We have a health plan that we tweak as we go and we have hope. Thanks Tim!

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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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