Thursday, August 17, 2006


The team of doctors I see for my chronic illness has been badgering encouraging me for the past 3 years to improve my exercise tolerance. In the beginning, one minute and 15 seconds on a treadmill got me a doctor's note to stop working immediately. That's how long it took me to hit my target heart rate. That brief amount of exertion would sideswipe me for days. Use up all my spoons. And so I got scared. Scared of trying. Many times my very stubborn self decided I would simply defy my limitations and wham - my bout of trying to prove something exertion would leave me out of commission for a day or two. Waking some mornings to ask dearest one to wash my hair, in order to save spoons, still leaves me a bit teary. Dearest one earns his living by being a caregiver. Anything that smacks of him being a caregiver for me makes me a bit sad. But saving my pride is a big price to pay for giving up 2 out of 3 available spoons for the day so I ask and he graciously washes my hair.

Give me a string of good days physically and I am sure I will never have a bad one again. It doesn't seem to matter how many times I go through this cycle, a bad day still makes me feel fragile. Three days in a row of 90 seconds on the stationary bike has often been followed by three days of racing heart beats and limbs that felt like they were encased in concrete. Eventually I said to hell with it. It just wasn't worth it.

But last winter I saw a doctor who simply told me that walking wouldn't hurt me. He said if it felt too overwhelming, try walking at the end of the day so I wouldn't have to choose between walking and having a life. That was the first time since I started this journey, that I saw a glimmer of hope. Hope that I could do something about my physical stamina. And so I tried. Walked to the end of the driveway and back at night. Eventually was able to walk on the gravel road. Some days I couldn't lift my feet by the time I got back in the yard but I did it anyway. Dearest one and I joked that I was walking like a little old lady. I tried to be brave but I wasn't feeling very brave. There are times when my limitations make me want to sob from that deep place within.

By the time I saw the cardiologist a few weeks ago I had built up to walking a mile at a time at least 3 days a week, some weeks 5. I walked 6 minutes on the treadmill during my last heart stress test before my heart rate was so high I had to quit. I'm making progress and I am thrilled about it. I challenge myself a bit more all the time. I've gone from parking beside the handicapped parking space to about halfway across the parking lot. Yes, there are still days when I get part of the way through a shopping trip and my heart is going so flipping fast and I'm having a hard time lifting my feet. When this happens I sit out the rest of the day in the van. The geneticist told me in June that this illness is one of peaks and valleys and to pace myself in order to live with it. I dare to say I am on a peak. I never thought this day would come.

A year ago dearest one and I were talking about pulmonary fibrosis and life expectancy. I don't think in those terms anymore. I don't think I have the fibrosis. Whatever is going on in my lungs is something less threatening. Somewhere along the way I decided I would focus more on living than on dying. At the women's retreat I spoke at in May, I was sure I had experienced some kind of healing. Just before I gave my talk a group of women prayed for me, and I experienced this ability to draw breath into my lungs like I can't remember doing in years. I told God at that point, temporary or permanent,I'd take whatever healing I could get. And whether the peak lasts a month or a year, I'll enjoy it for all it's worth.

Catching up on my bloglines today I came across a video that inspires me. I hope it inspires you, too. Some days I just need perspective to choose optimism over the pessimism that comes more naturally for me. This video does that. This father/son team are awe inspiring. It took forever on dial up to download it,(make sure you have the sound on) but it was worth the wait. Here is a link to read that gives some background before you watch the video. I think I have a new mantra.

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