Patient Blogs | Lupus
How I Deal With Lupus Fatigue
photo of tired businesswoman sleeping on desk

I don’t think you can understand fatigue until you’ve experienced it yourself. Many people think it’s just feeling tired, needing to sleep, or spending the day on the couch. When I’m fatigued, it feels like my entire body is filled with sand. I feel like I cannot move, and no amount of sleep or rest will fix it. It feels impossible to do my normal tasks. Fatigue can be incredibly overwhelming, physically and emotionally, and I’m still learning how to deal with it.

For me, fatigue can come at any time. There is often no identifiable trigger. I will be feeling fine, and then all of a sudden it hits me like a ton of bricks. I don’t know why it’s happening or how long it will last. Sometimes, it will be a sign that I’m having a flare-up, or it might just be a bad day.

The lack of control over something so debilitating makes me really sad and angry. I hate knowing it can sneak up on me and surprise me. The fatigue always seems to come after a period of good days, which is even more upsetting. I find it helpful to not fight whatever I’m feeling at that moment and let myself be mad, heartbroken, and disappointed. Sometimes, I don’t even have the energy to cry, but it makes me feel better to have some sort of emotional release.

One of the most difficult parts of my fatigue is trying to figure out whether it’s an indication of a flare or just a normal symptom. It can be confusing because it often feels the same in both situations. I really have to listen to my body, take note of any other symptoms, and see how long the fatigue lasts. It takes a lot of patience and attention to detail, trying to pick up on any signs that lead to a flare. My flares increase in severity very quickly, and catching them right away makes a huge difference. I try to stay on top of this as much as I can while I’m experiencing fatigue.

Unfortunately, there aren’t a lot of things that improve my fatigue, but I know that pushing through it definitely makes it worse. I usually have to cancel any activities I have scheduled and stay home and rest until it gets better. I watch a lot of TV and movies and listen to podcasts. I eat my favorite foods. I take baths. I try to treat myself with extra kindness. None of this is my fault, and I always have to remind myself of that. I just need to take care of myself the best way I possibly can and be patient with myself and my body.

 

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Erica Lupinacci

Erica Lupinacci

Diagnosed since 2009

Erica Lupinacci was diagnosed with systemic lupus erythematosus in 2009. She is the co-founder of Suffering the Silence, a 501(c)(3) nonprofit dedicated to leveraging the power of art, media, and storytelling to raise awareness and break the stigma surrounding chronic illnesses and disability. Lupinacci has spoken about life with chronic illness for the Yale School of Nursing, Weill Cornell Medical College, Awesomeness TV, The Mighty, and more. She is an actor and producer living in Los Angeles and most recently co-created & produced Trust Me, I’m Sick, a short docuseries about life with chronic illness. Learn more about her work on her website.

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