...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Diagnosis – It Requires a Case Study of One

6/4/2013

4 Comments

 
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We all know that ME/CFS is a wastebasket diagnosis.  Although we all share a common group of symptoms, there are no definitive tests or measures that actually show that we have the same causative disease.  As most people believe, there are many diseases currently grouped as one under the ME/CFS umbrella diagnosis.  For me, the healing actually began when I finally accepted the lack of specificity of my ME/CFS diagnosis and started to solve the puzzle of my own version of ME/CFS.

Along the way I was diagnosed by many well meaning and somewhat helpful family and friends and also by more negative people most of whom labeled me with all kinds of diseases and determined, whether they had met me or not, that I didn’t really have ME/CFS. 
They decided that I actually had ‘fill in the blank’ flavor of choice.  I don’t think this was a unique experience for me.  I would guess that most patients who get the ME/CFS diagnosis have to deal with some judgmental ‘know it all’s. 

If you’re not already on the ‘case study of one’ track, I encourage you to start.  This means keeping a daily health record with times, activities, symptoms, treatments, nutrition, etc.  The time is well spent as you begin to see, after a period of time, a true picture of your real disease ebb and flo - not marred by ME/CFS brain fog.  Are you keeping a daily health record?  How are you tracking your specific version of ME/CFS?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

I will be out of WiFi range starting Thursday for four days.  I’ll be back next Monday.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.


Be Well Again,

Martha

4 Comments
Grace link
6/5/2013 05:59:13 am

Martha,

I can certainly identify with the process of being labelled and re-interpretted by others. CFS/ME is an uncomfortable diagnosis: for me (the patient) and my family, friends, and acquaintances. It is messy and uncertain and deviant.

When I get suggestions like "All you need is a week at the beach" or "Try more yoga and focusing on the positive," my reflex reaction used to be irritation and self-pity. These days (after nearly 11 months of this kind of thing), I am choose not to waste any of my energy (which we know is precious) on this kind of dialogue. I know everyone is well-meaning, and I also know that a year ago I probably would have responded to myself similarly. I know these pieces of advice come from a genuine place, and that's really all that matters to me.

I really, really like your advice to make yourself a case-study. Thinking of myself this way takes some of the emotion out of it and allows me to see more clearly the nature of CFS as it exists now in my life (without the anxieties of what it will become, who I used to be, etc.).

I bought a basic planner that has big enough spaces for each day to track activities and symptoms. After Sunday there is a blank spot called "Notes," where I try to jot down any patterns I saw over the course of the week. The planner also has a view of the entire month. I am still trying to work out the best way to track things, but it is definitely something I will stick with. Right now I just write down the hours of sleep I get, what time I eat, walk my dog, write, clean, etc., but I'm not sure the best way to track my symptoms (fatigue, neck pain, brain fog). Just working on finding what is most effective for me. How did you do it?

Thank you, yet again, for a helpful and insightful post. I've started a blog, too, and hope it can be a piece of my recovery.

Have a wonderful day :)

Grace

staysoft.wordpress.com

Reply
Martha
6/5/2013 10:54:38 am

Grace, your daily record sounds solid. Congrats! For me, I had a place on my daily page where I noted how I felt that day. It often included physical symptoms which were the most prominent that day, an energy level rating on a 1 to 5 scale (I was a 1 or 2 for quite a while but it got better :) and a general comment on my mental state. Some days didn't have all three if the day was average in one category. The patterns that develop will show you how to avoid set backs and keep at a steady level long enough to give you a lasting benefit so you can then take the next step. Keep us posted on your progress and send me one of your blogs so I can guest post it here. Thanks!

Reply
Eleni
6/7/2013 08:17:45 pm

Dear Martha,

Thank you again for a spot on, very helpful and encouraging post! i've had C.F.S since I was 12 and now I'm 37, so a while longer than 4 years but I get sooo much from your posts - the topics you post about are still Just as Relevant as if I had been unwell for 4 years. I learn a heap, am reminded of some lessons i have learnt but may have put aside with the ups and downs of the disease and also very importantly feel greatly encouraged also by your posts. I also love when that they are a good gentle bit of info i can give my family to read sometimes! Great work - Thank you ++

Reply
Martha
6/10/2013 12:13:05 pm

Eleni,
Thanks for your kind words. I'm glad that you find my posts helpful. I am committed to being part of the ME/CFS conversation as I have been there and am grateful to be well again. I can only imagine what it must be like to have been struggling with ME/CFS as long as you have. I urge you to take a giant step back and take a good thorough look at everything. It's never too late to get focused and start treating yourself like a case study of one. Let us know how you're doing. Martha

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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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