Lupus Gives "Working Hard" a Different Definition

I used to enjoy working hard. I loved the challenge of trying a new workout, cooking an elaborate meal, or volunteering in the university gardens. I found physical labor to be rewarding in an exhausting-but-satisfied kind of way.

I don't do as many hard things anymore because they aren’t as manageable. Pushing my body tends to cause fatigue, pain, or a flare-up. My level of capability has been lowered while the effort required to do everyday chores has been increased.

Raising the difficulty bar

When I think about how things have become more difficult, I typically visualize pole vaulting. For example, washing my car used to be a medium difficulty level, so the bar was set at 10-feet. But now that I am chronically ill the bar has been raised to 20-feet for the same chore.

If I’m struggling then the bar goes up to 30 or 40-feet, and that quickly becomes impossible. On flare days I probably can’t pick up the pole in the first place. In fact, I’d probably still be in bed because I couldn’t drive to the exercise field.

Additionally, I’ve found activities that I never gave a second thought to, like reading a book, now ask too much of my body. Reading has always been one of my favorite pastimes, but these days holding a book hurts my hands, my eyes are too dry to read for long, and my neck is easily strained if I try to sit and read. If I’m experiencing brain fog then there’s really not much point in trying to read, as my mind will struggle to process the information. So lupus has turned easy, relaxing things into taxing pursuits.

I still do hard things

I still work nearly as hard as I used to, but that hard work looks very different. My "new hard" is making breakfast, doing a load of laundry, refilling my weekly pill organizer, staying positive on a high pain day, or playing cars with my son.

Unfortunately, strenuous work doesn’t always feel rewarding like it used to. I don’t often have a moment of satisfaction at the end of the day; it just feels exhausting and I tend to collapse on the couch in a daze. It’s tough to appreciate a good day’s work when the fatigue that follows makes you feel confused and helpless.

One way to cope with these struggles is to come up with creative ways to make things easier to accomplish. You might call these "spoonie hacks." For example, I like to batch cook chicken to freeze for use in meals and I use a hand mixer to shred it. This dramatically reduces the working time and saves my fingers from manual labor that will make them ache.

Accepting our new normal is hard, too

Just having lupus is a very difficult thing to accept mentally. If I’m not careful, I will get swept up in frustration about my lack of capability. It’s easy to waste my energy by feeling angry that I don’t feel well and can’t clean the house myself. It takes strength to not push myself too much, to be at peace with having to rest and ask others for help.

You have to be physically strong and have the willpower to do many difficult tasks. But it's an entirely different kind of strength that you develop when you're relearning how to get things done while living with lupus.