Saturday, November 1, 2008

Fatigue Mind Games

Image by BrachAnam9

I've read it on other web sites, other blogs, other discussion forums - the fatigue that accompanies some autoimmune diseases is the most life-changing of all symptoms. At least it feels that way. My energy reserves dictate exactly how my day will play out. 

I have read in various places that a good rule of thumb for those with fatigue issues is to allow three minutes of rest per each minute of moderate to vigorous activity, and I have begun to experiment with this recently. 

So far, in my very unscientific and biased experiences, this strategy seems to be somewhat successful. In my journeys around the midwest last week, I made a conscious effort to schedule rest periods after planned activities. This meant that I had to opt out of participating in a few events, but the absence of crash and burn sessions was worth it. Instead of drinking enormous amounts of high caffeine drinks and then faking higher energy levels and collapsing a day later, I didn't try to hide my need for rest and pacing. When I ran out of energy, I just rested. Period. And what was great is that nobody along the way seemed to think anything about it at all. I have always worried that others will think me a wimp or look at me as if I've grown three heads when I disappear from a gathering to rest. Silly me. Others told me that they were glad to see me taking care of myself. 

Pacing and rest and structure are not new concepts in fatigue management. I could find a zillion references to cite, but honestly people, and trust me on this one, these strategies will show up on the simplest of google searches. 

What is surprising to me is that in spite of knowing these strategies, writing about these strategies, and reading about these strategies, when I actually put these strategies into place, they work! Mostly. The underlying physiological reason for the fatigue still exists, of course. 

So after some type of exertion, which for me may be something like sweeping the kitchen floor, I will put the broom and dustpan down, then rest and watch the clock. After my determined minutes of rest are over, I lug myself off the couch and choose another task. As I move through my next task, I pay close attention to the signals that my body is sending me: am I perspiring more than usual? Are my hands beginning to quiver? Are my muscles aching? When the skin on my nose and face begins to feel cold and tingly, I know that I am running on fumes, and it's time to get horizontal for my ratio of rest minutes. 

It seems to be working, for a whole week. I'll keep you posted. 


Vicky said...

Great post Julia!

Mary said...

I like your strategy!

As a fellow Sjogrens person, I think trying to explain about the fatigue to other people is the most difficult thing. People think it is just "being tired" and suggest I take a nap. I try to compare it to having pneumonia - you can feel like you are actually dying of the exhaustion. But, that is still not exactly right. Sigh; I guess as long as the people in your life support your, it doesn't really matter whether they actually understand it all. :)

I'm glad you are having success with pacing yourself!

Julia Oleinik said...

Thanks, Vicky and Mary!