I can feel a flare coming on and I’m not sure what to do about it. The aching starts in my ankles and fingers and climbs up into my wrists and knees. If I’m really lucky I’ll be breaking out into a bruisey-looking rash on my arms and legs in a day or two (to go with the rash on my face, chest, and back). I think back over the past couple of weeks and wonder what I did wrong. Was it too little sleep? Too much stress? Not enough vegetables? Too much sun? Or is this just my body’s inevitable reaction to nearly 60 days of 90-degree heat?
I wonder if I should rush around trying to get all the things done that I will be too exhausted to do later, or if this will be a mild one, just a couple of days of extra pain, some additional ibuprofen and a little tango with prednisone.
Whenever I feel like this, I think back to an interview with Laura Hillenbrand, the author of Seabiscuit, that I read while I was in college, back in the long days of my un-diagnosis. Hillenbrand has a particularly disabling case of Chronic Fatigue Syndrome and wrote the book in fits and starts between naps on her bed. And if she could do it that way, so can I.
Toward the end of the article, Hillenbrand comments on what it means to live with CFIDS, and I think her words apply to any of us who are trying to figure out how to have rich, fulfilling lives with chronic illness:
…no matter what happens with this illness [CFIDS], I think it is possible to carve out a dignified and productive life. This illness takes everything away from you, and you have to find completely different ways to define what your life will mean to you. But I think it’s possible to make a good life. I have been happy in the time that I’ve been sick. It requires a real redefinition of everything, but I think it is possible to do.
I just have to remind myself that—for good or bad—everything is always changing. That a few days, or week, or even a month-long flare does not make for a lifetime of relentless misery. It will suck, but I bet I’ve been through worse and made it to the other side.
And as a bonus, or maybe a call-to-arms for the more-timid among us, here’s Bono reciting Charles Bukowski’s poem “Roll the Dice” (courtesy of brainpickings.org):
Go all the way, y’all.