Everyone is entitled to a bad day. But for me, “bad” can’t seem to contain itself to just 24 hours. It usually comes in waves that last weeks or months.
The defiant optimist in me likes to think that, in a way, I need bad days because they help me to realize just how good the good days are. I don’t actually believe that. But I really wish I could — it’s by far the easiest way of justifying and coping with the fact that bad days are a regular and recurring reality of my chronically ill life.
My energy ebbs and flows like the ocean. It’s predictably unpredictable. I always know I’m going to hit a wall of fatigue at some point, I just never know when.
When I was first diagnosed, fatigue was like a favorite T-shirt: I wore it every day for the world to see. Three years down the track and it’s not so bad. For the most part, I can keep it to myself and hide until I get home. But the moment my foot steps into the doorway, my seemingly unshakable wall comes crashing down, and the only place I want to be is on the couch watching Netflix.
More often than not I’ll end the day in exhaustion. If I’m really unlucky, I’ll start it exhausted, too. And I don’t mean tired or slightly unmotivated. I mean hearing my alarm go off and genuinely longing for the moment I climb back into bed that night — while I’m still lying in bed. I mean giving myself two more minutes to close my eyes when I’m leaving for work in five. I mean starting the day and knowing I’ll have to take it one half-hour block at a time for a 12-hour day.
What I’m talking about is not what normal people refer to when they say, “I’m tired.” I’m talking about eyes-hanging-out-of-my-head exhausted that no amount of caffeine will ever fix.
My bad days are truly bad. When I hit a low, it’s like a volcano erupts and all the emotion flows out of me like lava. All the frustration and heartache I usually hide so successfully from the world finally come to light.
And it’s in these moments that I allow myself to acknowledge just how much lupus has stolen from me. I’m not usually a “woe-is-me” kind of person. I always want to see the lessons and the silver linings — anything can have an upside if you spin it right. But sometimes I need to shake off my armor and have a truly vulnerable moment.
I never admit it, but living with a chronic illness is devastating. Living with fatigue is devastating. Every day I get up and know that there was potential for me to be so much more, if only I had the energy.
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.