By the time most of us received our ME/CFS/SEID diagnosis, we had seen several practitioners hoping to find answers as to why we couldn’t regain our strength and energy. Batteries of tests later, we still had no answers. So we were labeled with ME/CFS/Fibro or whatever it’s called in your region. For most of us, this pronouncement was accompanied by a complete lack of a treatment plan.
So we are left struggling with a chronic condition whose symptoms include pain, complete fatigue, brain fog and the inability to get restful sleep. From this place of low functioning, if at all, we have no answers and no solid treatment plan. And I don’t consider ‘rest and you’ll feel better’ a treatment plan.
What to do? I flailed around for quite awhile before I started keeping a daily record. But once I started, I began to have specifics that I could document and discuss with my provider. Instead of looking for him to provide me with answers to my illness, I provided him with solid data about my patterns and symptoms. Full disclosure, he never seemed to care much about my energy patterns. But he liked seeing symptoms that he could directly treat. And he loved getting feedback via follow up data to determine if the treatment had any effect. So I learned to work with him as a partner. It was a completely different relationship than I was used to but it worked for ME/CFS/SEID.
Do you have a provider that you’re working with? How do you successfully partner with him/her? 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,