More and more I’m learning that with lupus, nothing has any kind of permanency. I have days free of fatigue, and I feel so good that I question whether I’m really chronically ill. But those days never last.
Not long after, I find myself hit with another wave of tiredness. A simple and unpleasant reminder that I am not only chronically ill, but I always will be, until the day I die.
It can be hard to give an explanation of the fatigue I face, as it’s not a constant feature of my life. I’ll go through periods where I can push myself harder than ever, and run to my heart’s content. But what inevitably follows is a time where oversleeping and napping aren’t optional.
The month previous to now, I’ve felt great. I had been able to do incline running at the gym, specifically to build up my cardiovascular fitness. The days that followed saw me spending at least 45 minutes running and sprinting on a netball court.
Was I tired afterward? Of course, I don’t know anyone who wouldn’t be after three-quarters of an hour of high-intensity running! But it was the same kind of tired that everyone feels after giving it their all; it wasn’t the tiredness I had grown to expect with my illness. It wasn’t lupus fatigue.
Lupus fatigue is not like a normal person’s “tired.” It’s overwhelming and overbearing, in that sometimes I don’t even have a choice in the matter. It’s been decided for me that I’m sleeping. No questions asked.
The tiredness I feel due to lupus usually manifests in one of two ways.
Sometimes it’ll be a fight just to get myself up. My alarm will go off and, while I’m still half-asleep, a skirmish will take place as I barter with myself about how many more minutes I can spare. I’ll trade showering and eating breakfast for whatever time I can to rest my eyes and my weary body for just 5 more minutes. And, while I’ll struggle to wake myself up initially, if I’m victorious the hardest part is over.
At other times it’s more even aggressive. It’s an overpowering need to sleep and to nap – and it’s not at all optional. Choosing to ignore it means I won’t quite feel myself, and if I can continue to put it off, I’ll start to feel sick. Before long, ignoring it is no longer an option. Regardless of what I have planned, whether it’s a writing deadline, university work or readings, it’s no longer a priority; I have to rest.
There’s something about not having conscious choice that leaves me hurting. It’s my body. Shouldn’t I have control over its major functions? Shouldn’t I have a say? Not according to lupus.
Of all my lupus symptoms, I probably struggle with fatigue the most. I’ve always been a night owl. I love to stay up late and sleep in until near unacceptable times of the morning. Naturally, that plays right into lupus’ hands.
The hardest thing at the moment is that every day I wake up is different, I never know what’s coming for me. I don’t know if I’m going to rouse with ease, or fight with myself for every possible extra second of shuteye. I don’t know if today I can make it through my two-hour lecture alert and ready for all my other classes, or if I’ll be forced to go home halfway through the day to take a much-needed nap.
There is nothing constant about lupus; sometimes I’ll feel better than I thought I could, and others I’m reminded just how bad it can be. It’s an unpredictable and harsh ebb and flow that answers only to lupus.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.