Every once in a while, I drag out my soap box…. Here I go….
I frequently receive emails from people who have been struggling with ME/CFS/SEID for way too long. This is such a cruel disease. And I know that everyone’s situation is different with demands and responsibilities. But recovery from ME/CFS/SEID, at least for me, came at a price. A very high price. I literally gave up two years of my life in order to recover. And, as you already know, I hated every minute of it up until I started to taste how it used to feel to be well. And when I got that taste, I had hope that I could recover. Full disclose: I had to repeat that ‘first taste’ experience three times before I fully understood what I needed to do next which was nothing.
I needed to stick with the protocol and rest. I needed to stay right where I was and continue to do all the self-care that has gotten me that far. And that’s when I truly began to hate the protocol. As I felt better and better, I continued with the restrictive protocol. Ad nauseam.
So here are my questions to you. How long have you been struggling with ME/CFS/SEID? What quality of life are you living? Is there any way that you could arrange your life so you could dedicate one year to only being a Patient? 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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