About three months after being diagnosed with rheumatoid arthritis, I realized that I was more tired than I had ever been in my life. I was tired of my joints hurting and making it hard to do everyday things. I was tired of doctors and specialists. I was tired of blood tests. I was tired of experimenting with new medications like I was some sort of guinea pig. And, perhaps most of all, I was so very tired of being tired.
It was then that my husband and I decided to take a break and get away from it all. Without much planning we packed our bags, hitched up our little tent trailer, and drove up to Rocky Mountain National Park for a weekend of camping. It was September and we thought it would be nice to see if the aspens had changed color yet. We were not disappointed! The aspens were honey golden and absolutely glowing in the sunlight. Standing in the grove I took several long, deep breaths. I felt just the tiniest bit better.
We knew that I needed to take it easy for the weekend, so instead of hiking we mostly enjoyed the beauty of the park from our car. We drove up a single-track dirt road to the Alpine Visitor Center at 11,796 feet. The view was breathtaking and we watched a rainstorm drench Denver far below us. On our way back down from the visitor’s center, we were lucky enough to see several herds of elk traveling across the valley. It was mating season and the elks were “bugling,” a crazy sound that falls somewhere between a high-pitched scream and a squeaky swing set. We sat by our car and watched and listened to the elk for an hour or two. For the first time in months I started to feel a little less weary.
Unfortunately, about twenty minutes into the ride home on Sunday afternoon, I realized that my body had completely run out of gas several hours before. I hadn’t realized it, but I had been accidentally running on fumes – and all of a sudden there were no more fumes. Despite my best efforts to take it easy I had still gone past my new tolerance for activity. Fatigue hit me like a ton of bricks. And, without the glowing trees or gorgeous scenery to distract me, the swelling, curling, aching, and throbbing in my joints only magnified. It didn’t help that in our spontaneity I had neglected to pack the prednisone my rheumatologist had given me. I had missed two doses over the weekend and only realized how much I would pay for that mistake when it was too late to do anything about it.
By the time we got home I felt physically and mentally destroyed. I dropped like a stone into bed and lay there, joints throbbing, feeling absolutely smothered by fatigue. I couldn’t believe it. I had once been able to hike all day carrying a heavy pack, but now two afternoons of driving around looking at pretty trees and elk had turned out to be too much for me to handle. It was a very low feeling.
For most people, the word “arthritis” brings to mind joint pain and, for some, maybe issues with mobility. In fact, I probably thought the same thing when I first heard the term myself. But now I know from experience the fatigue of rheumatoid arthritis can be almost as incapacitating as the joint pain itself – and sometimes even more so. Learning to live with fatigue can be a long, complicated, and frustrating process.
I can say that in the past five years of living with fatigue, I have become much better at managing it than I was that particular weekend. These days I pay much closer attention to my body so I am less likely to get blindsided by fatigue. Based on experience I try to arrange my day to accommodate how I am feeling. I always try to get good sleep and I am constantly working to find a balance between staying active and overtaxing myself. If I find that I am more fatigued than usual, I talk to my doctor. And when I start to feel frustrated by my lack of energy, I try to remind myself just how far I have come.
How do you cope with fatigue?
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?