Having diagnoses of Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, IBS-D, Pelvic Floor Syndrome and probably undiagnosed Chronic Fatigue Syndrome and Restless Leg Syndrome, pose daily conscious decisions.
I must consider what may be happening on any given day to determine if I should expend the energy to take a shower…or to simply wet my hair in order to save the energy for a ride to town with my hubby and son.
The feeling of my skin dictates what I am able to wear. After all, wearing a long sleeve shirt vs. a short sleeve with loose sweater/sweatshirt, will either further irritate my overly sensitive chest area and/or increase the stabbing and burning in my arms.
The idea of shoes that have to be tied are, for the most part, out of the question. I must choose slip on sandals or boots. The combination of having to use my fingers to tie and the effort/energy to put on tennis shoes is too much!
There are many other decisions that we must make each and every day in order to manage our symptoms. (Believe me, I am using the word “manage” VERY loosely!)
The even harder decisions are those that we make with our health care provider(s). Deciding what type or combinations of medications we will use to try to reign in symptoms. We also must continue to monitor how these medications are doing. We must speak up and talk with our health care provider(s) when we need to increase dosages or to let them know that something is not working for us. We also have to discuss new symptoms and the changes in current symptoms.
With all this “thinking” we are also dealing with the brain fog that disorients us…makes remembering simple things, like brushing our teeth, to important things like taking our medication(s) a challenge on its own!
We must rely upon whatever “tool or tools” work best for each of us. Some find sticky notes helpful, some use lists….for me, I have a great Fibro App on my phone that tracks my meds, sleep patterns, symptoms…..and I also use a Note App to jot down questions for my doctor.
I also truly appreciate the fact that my hubby does his best to schedule work around my doctor appointments. He asks the questions that I forget…he interjects and comments on his view of the medications…so helpful to me and to my health care providers.