Tuesday, February 1, 2011

Weathering the Flare

If you have lupus, you have received information on how to get through a flare. It probably includes advice such as get plenty of rest, perform stretching exercises as tolerated, and avoid over-scheduling. The more difficult part is how to handle the severe disability that you may be experiencing.
My first reaction to having flares of any severity was to arm myself with all the devices and aids that could make my situation easier. I have canes in my car and home, a wheelchair folded in the garage, and devices to reach under beds and onto shelves when I can't bend low or climb on a stool. I also have the requisite housekeeping aids - a Swiffer mop that I can sit down and push around the floor, a rolling stool in the kitchen, a slow cooker for easier meal preparation.
It is much harder to arm yourself mentally and emotionally as the flare drags on. The tools I use here were more slow to develop, and run the gamut from simple repeated thoughts and mantras to complex plans. This morning, as I struggled to make breakfast and worried that I didn't have the motivation to finish, I tried to catalog some of those techniques.
My frame of mind on these days has to be "Do it now, make it better later." With every task that I complete right now, I can see a clear space where my life is easier ten minutes or two hours later. That is powerful motivation for me, seeing that I can make myself a better day with a little effort right now. It is especially helpful since I am alone. I need to reassure myself that I am capable of saving my own day. Having a victim mentality and feeling that I must wait for someone else to make it better would be deadly.
When I was a little girl, I loved The Little Engine That Could. I hope I have the title right. There's no time to look it up. Anyway, the little engine would chug up hills saying "I think I can, I think I can..." I used that in college when I would walk across campus at the end of the day, trudging over to the Peabody College music rooms to practice piano. I would have finished a long day of engineering and premed courses, and deeply desired my piano time, but had little energy for it. I imagined myself to be a steam roller, rolling slowly but relentlessly across the landscape, making my way to Peabody. I would tell myself again and again that I was rolling onward. My current mantra derives from that relentless forward motion and varies from "I'm doing this" to "one more, one more, one more"
I have to be my own best cheerleader. No one is here in the middle of the night to encourage me to get up and take the pain pill that will enable me to move in the morning. I have to say "Come on, Es, you got this!" and then I have to believe it. Faking a positive attitude works just as well as actually having one. As soon as you say the words, you are halfway to finished.
Anyway, all this is on my mind as I prepare to go see the oncologist and get my rituximab today. It's taking all my mental resources to push these aching parts forward, but I have prepared coffee, eaten a bit and taken my medicines, and I'm steeling myself for the bath. After all, if I don't go today, tomorrow will only be worse, and I can't deal with that as long as it is in my control.


  1. We'll support you with very gentle hugs - but lots of them!

  2. I too am a lupus patient diagnosed at 18 after being sick for most of my senior year of high school. Stay strong, draw strength from your lovely daughter and when you can, stitch it out.