Tired of Being Tired
A few months before my rheumatoid arthritis diagnosis in 2000, my body was struck by a number of symptoms I couldn’t make heads nor tails of. Studying abroad in England, my term at Oxford started with noticeable swelling in my joints, followed by aching pains.
Experiencing RA fatigue and exhaustion
I knew that something must be wrong, but it wasn’t until I was hit with debilitating fatigue that I sought British medical care. I was so tired that I thought I must be ill. The doctor wasn’t sure what to make of my symptoms, and he did something he said was rare for him and prescribed antibiotics.
Obviously antibiotics aren’t going to help an autoimmune condition, but not knowing that was what I was contending with, I was disappointed when the medication didn’t help. I felt so weak and tired that I spent most of my last two weeks abroad in my room, and started eating tons of protein and iron, grasping at dietary straws.
RA fatigue is a hard symptom to manage
Considering the extreme fatigue I experienced before my diagnosis, it seems like I should always be conscious when this RA symptom is at play. Yet, even after 15 years with the disease, there are still times when I catch myself wondering why I’m so very tired, and then eventually, while drinking yet another cup of coffee or a vitamin drink, it will dawn on me: this is RA fatigue.
The pain of RA demands so much attention that I never find myself wondering why my joints hurt so much. I always know it’s my RA. Pain is like a bucket of red paint thrown on the canvas of my body, whereas fatigue is like a thick layer of dust. It’s not as immediately recognizable, but it makes the picture dull and fuzzy. While pain roars in my face, fatigue talks about me behind my back.
RA fatigue can't be ignored
Yet, there are times when the fatigue is so intense that it does rise to the forefront of my consciousness. While the pain may feel like a knife, like a vise, or like fire, fatigue can have the crushing weight of a sledgehammer. Lately, I’ve been in a flare, and the fatigue has been like one of those heavy aprons used during x-rays to shield radiation. The weight of it pins me to the couch or the bed, and siphons away any motivation to move. I make it through the workday with difficulty, and when I come home I feel like I have no energy left, that I am running on fumes.
Fatigue impacts parenting and family time
My young children want my attention, but rather than play with them I watch them play around me as I lie on the couch. Sometimes we color together, with me supine and using a clipboard, while the kids sit at small chairs pulled up to the coffee table. Other times I’ll read to them, but when I can’t even summon up the energy for that I resort to audiobooks.
I look eagerly forward to bedtime, and once it arrives I fall asleep along with the children at 8:30pm. Even after nine hours of sleep, I wake to the sound of my alarm wishing I could stay in bed all day. When the weekend comes, there have been days where I spend the majority of the day in bed or on the couch, yet the fatigue is like a voracious beast whose appetite is never sated in spite of how much it is fed.
RA fatigue is hard to describe
It can be hard to communicate this to others, as the depth and the heaviness is so much greater than what I associate with the word “tired.” “Exhausted” comes a little closer, but still doesn’t do the feeling justice. I am eagerly anticipating the end of this flare and the waning of my fatigue, when I won’t have to try to find a way to describe how it is that I’m feeling and I can again have the sense that I have a good deal of control over my life.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?