Rheumatoid Arthritis, Fatigue, and Guilt

Today, I woke up at 10:45 am. Then I woke up again at 11:20 am. Then I also woke up again at 12:15 pm. Yeah, I slept so long I spanned the great am-pm divide. That’s what happens when the fatigue of chronic illness hits. You never know when but when it does, things just slow to a crawl. As I lay there at almost 1 p.m. on a Wednesday, I said to myself, “I suppose I should get up.” Then I stayed in bed for another twenty minutes.

RA fatigue is more than "feeling tired"

The fatigue that comes with rheumatoid arthritis and other chronic illnesses is real and it’s debilitating. Well, sometimes. Other times it’s not. The unpredictability is what makes it so awful.

Chronic illness fatigue is like that one friend who drinks too much. You never know when it’s going to happen, hell, you don’t even know if it’s going to happen today, but you know, beyond a shadow of a doubt, that at some point in the future you are going to have to hide the pinot and put them to bed on the basement couch. That’s rheumatoid arthritis fatigue and there’s so much more to it than just a lack of sleep.

Lack of sleep is still common, though

First, there’s the lack of sleep. I know, I just said that there was more to it than that but there’s still some lack of sleep in that complicated bouillabaisse that is chronic illness fatigue. Getting a restful night’s sleep when you have rheumatoid arthritis or really any chronic illness is, let’s say, elusive.

Have you ever seen those sleeping pill commercials where someone is sleeping peacefully with a smile on like they just found the mythical “20% off your whole order” coupon for Bed Bath and Beyond? Yeah, well, that’s so far from the reality of sleeping with RA that it’s not even a consideration.

If I end up asleep for 2 hours, it’s a miracle and my face looks more like I just got told the doctor is going to have to go in for a second colonoscopy. Still, that’s a win in the chronic illness game, folks, and if I happen to accidentally fall asleep soundly enough to dream for a few seconds, well, heh, that’s a banner day. We have a party when that happens, complete with a cake with a unicorn and a chocolate-covered rainbow on it with Dwayne “The Rock” Johnson or whatever the heck I dreamt about. Yeah, it’s that rare.

My low energy levels lead to guilt

Along with fatigue comes that wonderful emotion, guilt. Yes, like a mother who just told you she’s “not mad, she’s disappointed,” the guilt of laying in bed or sitting on a chair and shirking the responsibilities (which you’ve probably assigned to yourself) can be overwhelming. There is nothing that I hate more than “wasting a whole day” by not getting up until well into the afternoon.

Granted, a lot of that comes from my grandparents who considered it a crime against nature to sleep past 8 am. Rheumatoid arthritis, chronic illness, missing limbs, brain fell out – it didn’t matter, if you weren’t down at that breakfast table by the crack of 8 then don’t bother asking for food. If you move enough dirt from one side of the yard to the other, you get a glass of water and you’ll be that much more hungry for lunch. Yeah, I loved my grandparents, but they were the quintessential specimen of “the greatest generation.” So, much of that guilt for staying in bed comes from them, but even so, I still feel like I’d hate to waste a whole day in bed even if my grandparents were Olympic gold medal breakfast-in-bed winners. Just like any person, I have things to do, and I want to be able to do them.

These emotions are weighing me down

Finally, like I said, the fatigue is always there, even if it’s not front and center. That means it can be a drain on you, like an anchor you drag around. It saps your energy and, more importantly, your drive.

Many times, when most people reach the point where they are staying, “just a little longer,” I’m probably already over it. That’s why I have to leave parties early many times – because fatigue burns your candle 1.5x faster than most other people and no matter how many cups of coffee, sodas, or slaps to your own face you utilize, when the fatigue timer runs out, you’re done. That’s it, and if you push it too far past the point of no return then you end up paying for it for days.

That’s fatigue with rheumatoid arthritis and chronic illness in general, and you can see why it’s such an obstacle. A big, huge, 5000lb dark elephant who drinks too much just sitting in the rooms that are our lives. (Had to cram a lot of metaphor in there to meet my quota, sorry). It’s always there and you never know when exactly it’s going to sit on your chest, but even on the days it doesn’t, it’s still there whining and annoying you until you give in. Talk soon.