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.
I’m being sarcastic.
I just purchased a gorgeous new pair of sterling silver earrings yesterday at a local piercing shop that I’d been eyeing for almost three years.
I took them out before I went to bed last night and set them on my nightstand. This morning I woke up to discover that the parts that had been touching my ears and the little bit of skin behind my ears had already tarnished. So I asked my trusty friend google and discovered that one of the main causes of silver tarnish (after humidity… and I’ve no shortage of that) is hydrogen sulfide, aka sulfur gas. Now, I’m not a particularly gassy person, but I also read that people who eat a lot of acidic foods sometimes generate more hydrogen sulfide. I started wondering if there was something especially sulfuric in my diet. Had I been eating more garlic than usual? Was this a weird side effect of the Plaquenil? What was wrong with me?! Then I asked myself: “but why don’t my silver rings tarnish like this? Maybe because I wash my hands a lot?” And BINGO: The answer is that I use a (non-smelly) sulfur-based soap to control inflammation of the skin on my face, neck, chest, and back. I’m literally rubbing my earrings with sulfur every time I wear them.
Mystery solved. I guess it’s time to invest in some Tarn-X.
Hello blog, sorry I’ve been away. Life got in the way and suddenly it’s three weeks later with no updates. I was busy teaching while you were just lounging around the pool, I’m sure. Or whatever it is that blogs do when they’re not being attended by their creators.
I spent the last three weeks teaching in a program for gifted teens. It was both amazing and exhausting. And reminded me why I don’t teach middle school or high school during the rest of the year. Most teenage boys have so little impulse control it’s comical.
In some ways, it was good for me to keep busy. My uncle died suddenly of a heart attack a few weeks ago, so I’ve been doing a lot of thinking about living purposefully and not taking anything for granted. On the one hand, I think being chronically ill makes me more aware and more appreciative of everything that’s going on in my life, but there are some times when it just feels like I’m enduring my life until something changes. Granted, when it comes to my health, I don’t always have the power to change it, or the change will come slowly, if at all. (I’ve been through enough cognitive behavioral therapy to be convinced of the power of positive thinking, but there are limits to what the human body can do and feel in any given situation). What I need to avoid is taking that sort of “endurance” mentality and applying it to other things that are within my power to change. I don’t have to spend time with people I dislike, or who make me feel less-than. I don’t have to make and honor commitments that other people try to pressure me to make when my gut tells me “no.”
In other news, this relentless heat (and its accompanying $180 power bill) does not make me happy. I can’t remember the last day it didn’t hit the low 90s. While my arthritis tends to do better in the heat, nothing else does. Well, no chillblains either, but there’s plenty more to worry about. I’ve been coating myself in sunscreen every day before I leave the house, but even that doesn’t seem to be enough to keep me from reacting to casual sun exposure (driving to work, walking from one building to another). I have a lovely rash all over my chest and shoulders that looks like acne. I almost wish it were acne– at least then it might respond to something other than steroids.