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My lupus fatigue defined

Posted Oct 05 2012 8:00am
Wow. That nasty little thing called lupus fatigue is a bear! As mentioned in my post on Monday , I had a bit of a flare-up last week, including joint pain, swelling, and fatigue, and I'm not going to lie to you - I'd forgotten how bad that fatigue can be.

Thankfully, the join pain and swelling I experienced wasn't awful. It was confined to one hand, and it was more annoying than painful. These days, one or two swollen digits actually serves as a pretty good warning sign for me - a signal that although more involved disease activity is brewing, if I act quickly, I might be able to stop lupus in her tracks. I just immediately have to scale back on my activity level, majorly ramp up on my sleep, and usually, I can prevent the disease from going any further. And per doctor's orders, an extra dose of 5mg of prednisone usually helps, too. (Please be sure to check with your doctor before altering your medication!)

But this time, the effects of lupus went deeper, and I wasn't prepared. The fatigue came out of nowhere - that overpowering, debilitating, "I'd rather not talk because it takes too much energy" kind of fatigue - and it's been years since I've experienced that.

Of course, I experience some level of fatigue every day around 2pm - but my nap seems to preempt that fatigue from becoming exhaustive and disruptive. As I was reminded last week, a real dose of lupus fatigue makes it difficult to walk, talk, or even think. For most of two days, I felt weak and slightly disoriented, making it preferable to sit rather than stand. I didn't want to engage in conversation, and it was difficult to make even the simplest of decisions. And I felt deflated and drained, as though my body was completely devoid of energy.

Now, before I end up writing a short dissertation on lupus fatigue, how about I just list a few snippets from my week, and see if anyone out there knows what I mean
I felt so limp and lifeless at one point, it felt unnatural to lift my hands to hold the steering wheel. They just kept drifting down to my lap where they could rest.

I felt as though my vision was blurred - like there was a film coating my eyes preventing me from being able to focus visually. My eyes were grainy and a little itchy, too - not like allergy-itchy - more like sand-in-my-eye kind of discomfort.

It was difficult to muster up the energy to concentrate to read or write. There was even a sort of delay when interpreting short lines of text, commands, or requests (i.e. "Mom, can you help me with 'x'?")

Forming sentences seemed to be a difficult maneuver, too - I actually had to pause before I spoke - and I was anything but articulate.

Remembering things from 5 minutes ago was taxing, much less a day ago.

I moved in slow motion from the moment I woke up until the moment I went to sleep. I just couldn't get any momentum going, and it kind of felt like I existed in a thick fog that followed me everywhere.

I upped my naps to two a day at one point - and it still wasn't enough. I woke up just as tired, and even more disheartened, because of how tired I was.

One evening, Johnny asked me how my "processing power" was before he launched into some questions about some upcoming travel logistics, and I'm glad he did. I was in no shape to think critically, problem solve, or even engage in deep dialogue - so we held off the conversation until I was feeling better.

I felt very disengaged and disconnected, as if  I could see a version of myself moving around the room, doing things and carrying on at a normal pace. And while I wanted to be doing what I saw this efficient version of my self doing, there was no chance of mustering up the energy to even begin to move as quickly.

Lastly, the tell-tale signs that disease activity is upon me, is that I wasn't hungry, and I wanted to close my eyes whenever my body wasn't in motion.

So - there you have it. A very rudimentary, off-the-cuff description of what my lupus fatigue looks like. Anyone want to compare notes?

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