Tuesday, July 7, 2009

Getting Down to the Business of Creating a Routine

Time for me to get down to business and start creating my personalized routine. I think a good place to start is by answering the questions Joan Buchman posed in her article How I Use Routine to Successfully Manage Fibromyalgia. So here I go:

  1. What are my present pain and fatigue levels?
For the answer, I begin by referring to the CFS/Fibromyalgia Rating Scale courtesy of the CFIDS & Fibromyalgia Self Help website.

It's been a while since I looked at this scale and last time I rated my self at 30. Today I would say that I am a 35 on average, and range between a 25 and a 40. What that means is that my pain and fatigue symptoms are moderate to severe, I can leave the house several times a week and I can do between 2 and 4 hours a day of activities like household chores, container gardening, pet care, driving, shopping with the help of my husband, cooking, arts and crafts, socializing, talking on the phone and using the computer. That doesn't mean I can do any activity for 2 to 4 hours straight! Depending on the activity, I can do about 15 to 30 minutes of an activity before I need to stop and rest for anywhere from 15 minutes to 2 hours. Using this approach, I can be active up to 2 to 4 hours a day.

Right now, the symptom I notice first when I check in with myself during the day is fatigue. Being in pain all the time is very tiring, which probably accounts for my need to sleep at least 8 hours and preferably 9 to 10 hours a night. With all my sleep-related problems, the quantity and quality of my sleep directly impacts my fatigue level, although I believe that the fatigue would still exist even if all the sleep problems miraculously went away. I also need to be careful about how much physical activity I engage in, especially aerobic exercise like walking, as my body responds to exercise by increasing my fatigue level for 12 to 36 hours afterward. This phenomenon is called post-exertional fatigue. So you see, fatigue limits how much I can do during the day and determines what I can do and how much time I need to rest.

As for pain, it takes many forms during the day, from significant numbness and tingling in my arms, hands and the sides of my legs in the morning to achy and sore muscles throughout my body by the end of the day. Something as trivial as my puppy jumping up and touching the side of my leg can intensify my pain, cause me to yelp and and push him away. Using any part of my body in a different way or for too long results in increased pain symptoms. Changes in the weather can make my pain worse. I've been in pain for so long now, approaching five years this October 2009, that I honestly do not remember what it feels like to be pain-free.

So this is where I am right now in terms of my pain and fatigue symptoms. Tomorrow I answer the question: What have I learned so far about minimizing these symptoms?
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