Managing Lyme’s Unpredictability

One of the most frustrating things about this illness is the unpredictable nature of its flare-ups. Even without flare-ups, the illness is unpredictable: one month I am dizzy each time I stand up, almost to the point of blacking out, the next I have to wear sunglasses and a hat indoors if the lights are on. One day I feel like myself, the next I am functioning but fatigued. One hour I have a headache, the next it feels as if the clouds have lifted and the angels are singing and I can concentrate. Anind, I say, take the kids, I’m going to write!

So … the normal ups and downs are manageable by being flexible and agile and having great support at home and work. I apply the same skills that helped me when I had a repetitive strain injury that limited me to 30 minutes a day of typing, the same skills that helped when I had a newborn and was a (relatively) new faculty member: I stay organized, so that I know what is most important and most urgent (not the same thing) at all times. I also have a very good sense of what I can do in what condition. Then I stay on top of all the mundane stuff, and whatever I can do that is important or urgent. This takes planning and organization, especially when my work hours are limited, but it is possible to do. And the advantage is that when the opportunity to really think arrives I am able to use it effectively. If the timing is bad, I rearrange my schedule when possible.

But even the best organizational skills in the world (and mine are pretty good) mean nothing when a true flare up occurs. Not the rapid changes described above, but the sinking suddenness of pain, fatigue, and headache that is inescapable and complete. One time I went within the course of an hour from (literally) doing handsprings on a gorgeous spring day in my child’s school yard to laid out on the couch napping when I was supposed to be watching her. This week (2 weeks into my first attempt to teach again) I had a similar descent. After biking Elena to school and standing around happily for an hour I suddenly found myself unable to hold my head up long enough to iron napkins (a “chore” the adults help with) and had to lay down. By the end of the day my light sensitivity had spiked, I had a headache, hot flashes, back pain, ear pain, extreme fatigue, and a total inability to read or write. A good friend (Scott) observed my descent and offered me a ride home, where I collapsed on the couch and barely left it for 2 days (we’ll see what tomorrow brings). The cause? Possibly wearing an item of clothing with some dust on it, but mostly unknown.

Clearly I have the ability to write now, and in fact I am lucky that even at this nadir my experience of lyme is unpredictable — yesterday and today around 4 or 5 pm the cognitive symptoms lifted and I could concentrate for a little while, enough to take care of a few fires, and of course I was prepared and knew the important ones. Having a job and family I love helps — rather than sinking into the remaining symptoms I’d much rather focus on the things I care about when I can.

I am lucky that the first two weeks of the semester were relatively a good period (though tiring) so I was keeping up, Friday was a planned work at home day and now it’s the weekend. I’ll have to hope that these flare-ups continue to be relatively rare and confine themselves mostly to “convenient” times (i.e. days I am not teaching). Even so, with the CHI deadline coming up on Friday, losing days of work is hardly convenient and will require even more careful use of my time in the coming days.

I remember that when I first began to comprehend what I was facing, around the time I started this blog, I read some other blogs (linked off of this one in fact), and found an essay on this same topic. The author talked about embracing her flare-ups by pampering herself with time, simple enjoyable activities (like a good movie if she was up for it) and compassion. While most of the essay (above) has to do with how to maintain my job in the face of lyme’s unpredictability, her advice is worth following. When work is neither possible nor enjoyable, acceptance, compassion, and a good pampering are a crucial ingredient to something equally important — maintaining my sanity.

4 thoughts on “Managing Lyme’s Unpredictability

  1. Thank you for sharing. I’ve just received my diagnosis of Lyme and am still learning about everything it entails. It’s good to know that I’m not alone and I appreciate your insight in how to get through the bad days. Thank you.

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