I stopped the Orencia infusion two months ago. The good news: I was not in a lot of pain and I was on a stable prednisone dose; the bad news: I was uncharacteristically tired. Over the last three weeks, I only spent about nine hours awake per day. Nine hours. That is a fourth of a day. I wasted away the last three weeks of my life because even when I was awake I so was tired and groggy I barely got anything done. Driving to the grocery store required a nap; not to mention getting the groceries and carrying them put me over the edge. I love naps. When I nap I naturally wake up after an hour and a half. Lately, I slept five hours straight. That is not natural.
If I was not asleep, I lay in bed barely capable of anything. I could not break this fatigue. I knew it was because of a flare but I was not in any pain so I did not feel it. My inner demons wondered if I was just lazy since I was on “vacation”. But, if you know me personally, you know I like to keep busy and I feel guilty when I am not. Breaks are not in my vocabulary. For the last three weeks I’ve beaten myself up even though the logical part of me knows it was not my fault.
Fatigue is a funny symptom. It is also the most debilitating one. I become so run-down and incapable of normal function. Fatigue is a result of many different thing: overwork, infection, or recovery, to name a few. But, once it hits, I have no other choice but to wait it out. I cannot prevent it nor can I treat it.
Extreme fatigue exists with every condition. Endless money, resources and time go into researching the newest medications but rarely goes into fatigue itself. If I could just control this weariness I could resolve a lot issues. I can manage the pain (with medication), I can deal with the nausea (again, with medication), and I can deal with the immobility (you guessed it, with medication) and none of these carry a candle to the exhaustion. There is no magic pill I can swallow so I have to ride out the storm.
The argument behind the research is if I control symptoms my body would not feel tired from attacking itself. If I control the disease, the fatigue will resolve itself.
Maybe fatigue isn’t a symptom after all, maybe it is a side effect.
Either way, I wish it did not exist.
Hi, my name is Monica and I have RA.