I’m not going to go into “what is lupus?” nor am I going to list the statistics of the disease “population,” nor the toll that lupus takes on families, society, and the workplace. There’s plenty of information about that at lupus.org and other websites, as well as info available through our doctors.
But I would like to address one little subject that’s actually a very, very big deal: Fatigue and friends.
One of the symptoms very common to lupus patients is fatigue. It is not the “usual” fatigue that comes from a busy life or a particularly busy day. It is crushing, numbing, and strong. It can really weigh you down, even for the most “mundane” of tasks such as opening your mail. And it can come on suddenly, as if being hit by a tall, pounding wave of fatigue that drags you back out to sea with it.
With such fatigue, it’s no wonder it can be difficult to be a friend of someone who has lupus. I cannot tell you the number of times I’ve had to cancel an outing with friends at the last minute due to sudden fatigue. I also cannot tell you the number of times I’ve cut an outing short because my fatigue was just too profound.
Lupus fatigue does not “just go away,” necessarily, because you take a nap, sleep, or even have a few days at home before venturing out again. Over the past few years, for example, I’ve had a particularly trying time, and I’ve likened my need for rest much like “needing a long runway,” an expansive period of time during which I keep extra activities to a minimum.
With “old” friends, explaining the need for more rest and explaining the fact that lupus can be “very rude” at the most inopportune times, can bring better understanding between the lupie and the friends. With new friends, it might take a bit more explaining, especially that you’d truly/really/absolutely like to do X,Y,Z if only you weren’t so tired. As most of us don’t look sick, it might take new friends more time than the usual to “get” what lupus does and is. But that’s okay. The truly good friends will want to understand, and the result will be positive on all fronts.
Above all, when very fatigued, the lupus patient is well-served to acknowledge his or her state. We don’t do ourselves any favors by pushing and pushing – running ourselves into more problems than not.
Those long days at home, that chunk of time spent resting – these are not “wasted hours,” nor are they completely “down” time. During our “long runways,” we ease up on stress that can aggravate our lupus, and we allow ourselves time to mend, strengthen.
Good friends understand this, too. And when we have them in our lives, no matter our fatigue, we never cease to give thanks! 🙂
Blessings for the day,