The 1st Step in Tackling Fatigue Is Opening My Eyes

Allison Ross avatar

by Allison Ross |

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A graphic depicting two intertwined wind funnels: one swirls medications and bills into the sky, and the other swirls books and flowers.

I’m so tired.

That thought threatens to dominate my mindset. It affects everything, including my outlook, motivation, and productivity. Later in the day, it might even tip my appetite levels out of balance.

I just want to rest.

I close my eyes again, but my brain is already scrolling through too many synaptic messages to go back to sleep. There are so many things to get done today.

As a teenager, my life changed in a major way when I experienced a severe onset of vasculitis that would take five months to diagnose. This chronic illness permeates every aspect of living, including work, diet, schedules, friendships, and travel. But in adulthood, I’ve managed to adjust. In 2013, I even achieved remission, a term that is neither exact nor final, but simply describes an absence of disease activity.

For eight years, I have lived the triumph of extended remission. Most days, I’m grateful to feel pretty good. I take care of myself. I eat right, exercise, surround myself with uplifting people, and have a low-stress lifestyle. My house is comfortable and filled with things that bring me joy, such as pets and plants.

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But the one element that persists is fatigue. Combined with depression, it can seriously put a wrench in all aspects of my life. And when that happens, I can’t think about things, plural. I can only think about one: the next task I must complete. Just one.

In this state, I get extremely cranky and unapproachable. I’m tired, I don’t feel well, and I’m snappy with the people around me. It sometimes makes me wonder, “What the heck is wrong with me? I’m supposed to be healthy now!” But even in the absence of disease activity, I still have a chronic illness. Maybe I’m feeling the aftereffects of the initial onset, the results of organ damage, or minor inflammation. There might be some kind of unbalanced chemistry lurking within that’s affecting my spirits but not yet perceptible to my body.

Do something. Do anything, I tell myself. If I can get moving, the inertia has a chance to take over. Walking to the bathroom means I might make it to the kitchen and put on some tea. And if I take a minute to enjoy the steaming hot mug, I might glance out the window and acknowledge the bright morning sunlight. Sun triggers my alertness and helps me feel like I can try one more task on the to-do list. It’s like the storyline of the children’s book “If You Give a Mouse a Cookie” rewritten for an unmotivated adult.

Even in remission, the fatigue is real. It’s different than laziness or general apathy. Sometimes it’s accompanied by mild depression. It’s a deep, dark, heavy feeling knowing that today might just be a wash, as I feel too worthless to accomplish anything.

That’s what occurs to me first. But I can conquer it if I put myself in the right mindset. If I can do one thing — just one! — it will put me on a more positive track.

If I can open my eyes, maybe I’ll sit up. If I can get up off the couch, maybe I’ll go load the dishwasher. I’ll turn on some up-tempo music or a podcast, and before long, I’ve cleaned a room or two in the house and made banana bread. One enriching task leads to another as the mood-boosting snowball grows.

If I’m driving home from one engagement and have several things to tackle, I just do one of them. Then, if I feel good, I do another. But if all I manage is to drive home and rest, that’s OK, too. Not every day will be productive. It’s an exercise in giving myself grace.

A friend taught me a great trick: allowing myself to feel everything — frustration, depression, disappointment, ennui, whatever is getting me down — for 24 hours. Then, the deadline for bad feelings passes and it’s time to move on. Letting myself wallow with a time limit encourages me to avoid ignoring those feelings and to keep them in control in a healthy way.

On the occasional days when I truly can’t get up, it’s OK to stay down. A nap won’t last forever. And when I wake up, my body is better rested, making it easier to be productive and positive. If the worst-case scenario is sinking into physical rest and letting my mind recalibrate for a better tomorrow, that’s a trade-off I’m willing to make. After all, no one has consistently good days. That’s part of life.

There’s always another hour, another morning, and another chance to live better. So, I try to keep the momentum rolling forward however I can — even if it means simply opening my eyes.

***

Note: ANCA Vasculitis News 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 ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.

Comments

Jane Bilodeau avatar

Jane Bilodeau

2001 WG, 5 years unDX. I thought I’m reading my story. I have Been in remission for short periods of time . I am now starting to flair again. Fatigue, depression, anxiety are raising their heads. I recently moved and have boxes to unpack and pictures to hang. It will get done , one day.
I nap, or lay down listening to soothing music. Drink cold water. It works for me.
Thank you for sharing your journey. Sending you healing prayers. Jane

Reply
Chuck Dreiling avatar

Chuck Dreiling

i have had GPA for 27 years plus and done all treatments. I whole hearty agree with you, stay strong, keep moving and enjoy happy people. Bless you for your story. Thanks

Reply
DeAnn Wylie avatar

DeAnn Wylie

Allison you have said the things and spoken the truth of what it’s like to live with this intrepid disease, even in remission. Your article exactly explains every single day of my life since being diagnosed. I thought I was the only one suffering and did not realize the connection to the disease. Thank you for bringing this to light.

Reply
Victoria Brady avatar

Victoria Brady

Thank you!!!! I don't feel as alone,

Reply
ELAINE SULLIVAN avatar

ELAINE SULLIVAN

I was just recently diagnosed 6 weeks ago. My head has been spinning not knowing how my life will be from now on. I appreciate the help and insight I have gained from reading your column. Thank you!

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