Recovering from CF meant learning a whole new way of life from the inside out (see my new rules for living below). With that said, a friend of mine is combating CF using drug therapy at Stanford Med Center. There is evidence that for some people anti-viral meds work... I can try to get the name of her Doc. for you, but I wasn't impressed by the preliminary results from the study she was part of, and I'm not convinced that's the route for me. Anyway...new rules for living:
(1) A Priori: don't get angry... nothing sends me into a relapse like anger. And I've learned that nothing is worth a relapse in terms of the impact on my family. So whenever someone pisses me off I have learned to ask myself: it is worth it? As a result I blow off a lot.
(2) Nothing is worth a relapse... nothing. I do less at work. I care less about volunteer positions. I make a lot of mistakes. I say I'm sorry a lot and move on. I blow off high maintenance people even if I love them. I define my responsibilities as being in a very narrow band. I mute a lot of emotions that would otherwise take over my life.
(3) Yoga, garden and walk. Limit aerobic activity to days when I feel marvelous (1x per year?). Gardening... some days it means dragging myself outside, sitting on the grass and scratching the dirt with a fork -- but touching nature is very healing for me.
(4) Art and dream therapy... both really work for me. My CF is exacerbated by emotions I feel in my body but block with my conscious mind. Art helps me release them. I draw impressionistic images that feel to me like the sensations in by body then I list words to describe what I see in the picture. This was really helpful early on. I made tons of progress when I was working with a dream group... wish I could find another one.
(5) Forcing myself to stick to a routine. Up by 8am weekdays, 9:30am weekends... no matter what. No naps. In bed by 10pm. No media before bedtime. If (when) I get into a cycle of waking up at night I just get up and read or practice mindfulness meditations lying in bed. I let go of my fear about being exhausted the next day... oh well... a slow day tomorrow... so it goes. Pasta for dinner again.
(6) Mindfulness, forgiveness and boundaries. Read a lot of books on these topics. Seek out experiences that bring them into focus for me. I really like the books "Boundaries" by "Townsend and Cloud"
(7) Speak like a preacher when necessary.... I find myself blathering a bunch of aphorisms from my youth like a mantra... They are very soothing. Other people look at me like I'm a nut case but so what.
(8) Get outside in the sun as often as possible even if that means sitting in a chair wrapped in a blanket. Direct sunlight helps me regulate my body clock.
With all that said... recovering from CF is a journey of learning to live in your body. Anything that helps you get to know your body is good.... sending you lots of good wishes....Keep me posted on your progress... any if you ever have time for a walk.... my shoes are always ready... Alexis