The unrelenting fatigue hit me like a bad case of the flu. I longed to stay in bed all day, but I had a full schedule that wouldn’t allow for that. I pushed myself and continued to do so each day, until one day, I found I simply couldn’t push myself any longer. The fatigue had won.
At my worst, I was sleeping 18 to 20 hours per day, not necessarily all at once. Some mornings, after what felt like a good night’s sleep, I could start my day as I did before I had sarcoidosis. However, the fatigue would seep back in by lunchtime. I couldn’t help but fall into a deep slumber later in the day.
Friends and family tried to empathize with my lethargy. After all, we’re all tired these days, aren’t we? But I knew the fatigue they were referring to; it was the kind that would likely be relieved by a nap or a good night’s rest. I had experienced that type of tiredness, too, before sarcoidosis.
This fatigue, however, was an extreme sleepiness that no amount of rest relieved, and it had a negative effect on all of my activities. For instance, it caused me to pull my car off to the side of the road, curl up in the back seat, and sleep in the middle of the day. This would happen while I was en route to an appointment or in the middle of a workday, when I was still trying to get things done.
This same exhaustion caused me to nod off in the waiting room of a doctor’s office or to curl up on my sofa in the middle of the day. My husband came home from work late one afternoon and found me asleep on our sofa, in a comatose-like state. “This isn’t normal. You’re only 30 years old,” he said. And he wasn’t wrong.
I was experiencing an unrelenting washed-out feeling, my body unsatisfied by any amount of shut-eye. Yet, none of the tests showed anything wrong such as a sleep abnormality, depression, or even cancer. I couldn’t shake it off and just go on with my life. This exhaustion had taken over.
Luckily, that phase of fatigue didn’t last forever, but I still need more sleep than the “average” person my age. In addition, I often feel that flu-like state setting in when I start to get run down — like I just want to tuck myself into bed and sleep for a week. When this fatigue creeps in, it’s not without warrant. In fact, it serves as a gentle reminder to take it easy, rest more, and take care of myself.
In some ways, it’s helpful to know my fatigue is typical for someone with sarcoidosis. However, I have to admit, some days I’m simply tired of being tired.
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