© 2016 TSM We all know that ME/CFS/SEID is a wastebasket diagnosis. Essentially, we are tested for every possible known disease that we might have until all tests are negative and there are no more tests to try. Although we all share a common group of symptoms, there are no definitive indicators that we actually have the same causative disease. As most people believe, there are many diseases currently grouped as one under the ME/CFS/SEID umbrella diagnosis. For me, the healing actually began when I finally accepted the lack of specificity of my ME/CFS/SEID diagnosis and started to solve the puzzle of my own version of ME/CFS/SEID.
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/SEID. 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/SEID 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/SEID brain fog. Are you keeping a daily health record? How are you tracking your specific version of ME/CFS/SEID? 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
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/SEID. 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/SEID 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/SEID brain fog. Are you keeping a daily health record? How are you tracking your specific version of ME/CFS/SEID? 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
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