Sometimes, you just know it's going to be one of those days. You have a million things planned that you need to get done, but you wake up that morning, and right away you know your RA has a different agenda. No matter how much you might will yourself to fight it back, ignore it or deny it, the fatal fatigue has already slipped in to begin what I call 'the slow leak.'
You go through the motions telling yourself you'll feel better as the day goes on. You get ready. Maybe you even make it to work, but like a tire that has been punctured, what little energy you had steadily seeps out until suddenly, you are so profoundly tired that you can't even hold yourself up in your chair any longer. And that's it - your day is over. Off to bed you go.
Or maybe this: You're feeling pretty good. You are out participating in your life the way you should be - out with friends, running errands, having a normal day - when out of nowhere, some internal switch is flicked off by your pesky immune system and every ounce of energy you had vanishes, leaving you vanquished and utterly exhausted with a force that surprises even you.
Or how about this: You don't feel great, but you've felt worse, so you try to get on with things. Mentally, your mind is active and alert, aware of all that needs to be done, but your body feels like it is moving through a thick fog of inertia that you just can't shake. You try to get extra sleep. You eat especially well. You exercise, hoping to burn off the fog fatigue surrounding you, but to no avail. You're stuck in it until it decides to lift, which could take days or even weeks. Too bad if you had other plans.
There is no denying that the pain RA causes is awful, but for many of us, the most damning, highly inopportune aspect of having RA is that while the pain is bad, the fatigue is often worse.
It comes and goes of its own accord. Sometimes it hovers menacingly, threatening to descend at any moment and rain on your parade (or your business meeting, a dinner out with friends, that big party you've been planning for weeks and really looking forward to).
For me, even though most of my other symptoms are under control, I still find myself struggling to deal with fatigue. There seems to be no way to beat it, either.
Take last week, for instance. I started Monday feeling fine. I had the week all planned out in terms of when I was going to fit in my exercise, drinks with friends, etc. Monday went as planned, but that night, I found myself wide-awake at 4am in the morning - never a good sign. I skipped working out the next morning and mustered through Tuesday as best I could, meeting up with an old friend after work to catch up. It was not a late night by any stretch of the imagination. I got to bed at a reasonable hour, but once again found myself tired and awake at 4am, desperate to fall back asleep.
At 6am, I finally nodded off into a deep, comatose-like slumber, only to have my alarm wake me up an hour later. I had a 9am appointment and couldn't be late for it. I stared up at my ceiling and just knew. But I tried to play ignorant any way. All my body wanted to do was curl back up and fade away into twelve hours of sleep. I felt like I could have slept for hours and days, and it still wouldn't have been enough. Instead of giving in, I managed to dredge my legs over the side of the bed and get up. I threw myself into autopilot-mode, which carried me through my morning appointment and into the early afternoon. As each hour went by, though, I felt less and less alive and could feel my energy wheezing out of me. By 2.30pm, I realized I was slumped in my chair, barely holding myself up in a sitting position. I still had a full afternoon of work left, but the jig was up. I gathered my things, let my coworkers know I was going home, and home I went, where I crashed back into my bed and slept for thirteen hours. Meanwhile, my to-do list died a silent, withering death.
Luckily, I woke up the next morning feeling better, but I spent the whole day playing catch up and feeling bad about all the different things I had meant to get done the night before and how I hadn't exercised in two days. Now I would have to figure out how to cram everything into the rest of the week without overdoing it. I felt like I had been robbed of an entire day's worth of my life that, frankly, I had needed.
I beat myself up about it for most of the day, but walking home that night, it dawned on me that none of it was really my fault or within my ability to control. I know that RA is unpredictable. I know it wreaks havoc now and then regardless of what I've got going on. I slowed my pace down and chuckled at the absurdity of my reaction. Even though I know I have a disease that essentially steals time away from me, I still end up feeling guilty when I'm not as productive as I want to be, as if I did it on purpose.
Like it or not, accept it or not, this is how RA works, and the more we try to resist it, the more insistent it can become. Sometimes, it makes more sense to stop and do what we have to do to take care of ourselves instead of pushing through and ending up in the same boat anyway. It may be inconvenient, but it's the truth.
Sara is also the author of the blog, The Single Gal's Guide to Rheumatoid Arthritis.