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
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
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