While I Am Napping Time Is Passing Me By

While I Am Napping Time Is Passing Me By
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No matter what happens, the world keeps turning. It doesn’t stop for moments of happiness or moments of heartache. Sometimes I wish it would come to a halt. Not for too long. Just to give me enough time to wipe my tears and take that deep breath necessary to pull myself together again. Or for long enough to trick my fatigue and hit the quick reset button on my body.

At my last appointment, I told my nephrologist how much the warm weather was affecting my fatigue. As summer in Australia nears an end, my heart sinks when I realize I have spent nearly every hot afternoon asleep in my bed. I am the healthiest and happiest that I have been since my lupus diagnosis in 2016. But despite the improvements in my lifestyle, mind, and body, napping is an inescapable necessity in my life.

The past few months, I have woken up from a nap and opened my Instagram to see a flood of photos of my bikini-clad friends enjoying a beautiful day at the beach. They are always all smiles.

I was brought up at the beach. It was not just my playground; I was at home in the sand and saltwater. It was the place I loved more than anywhere else. I miss going to the beach, basking in the sun, and leaving with bronzed and salt-crusted skin. But my disappointment is not really about the beach.

Recently, I wrote about how I have learned to accept and embrace napping. That is true, but there is still a part of me that hurts knowing how much time passes while I am managing my fatigue.

Summer reminds me of that loss. It makes me think of how frequently I feel compelled to nap and how much time that adds up to in the long run. I suspect I have spent at least two weeks of the past four years napping.

It terrifies me to think about what the total might be throughout my lifetime. The thought that I might lose a year to napping is a devastating realization and a real possibility.

What are your worries about fatigue and napping? Do you have any tips on how to manage it? Let me know in the comments below!

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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.

“Kristi” is a surfer, barista, and university student studying for arts and science degrees in philosophy and mathematical modeling. Living on the picturesque Bellarine Peninsula on the southeast coast of Australia, she’s deeply passionate about salt water and amazing coffee — even though she’s not allowed to drink it. Above all else, she loves traveling the world! Diagnosed with stage IV lupus nephritis at 20, she’s determined to not be defined by her autoimmune condition. Using writing as a medium for self-expression, she hopes to share her life and journey to both raise awareness and support others in similar situations. A big believer in the concept of dialectics, she loves sharing and hearing unorthodox, sometimes controversial, views. She’s quirky by choice, inquisitive by nature, and smiling always!
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“Kristi” is a surfer, barista, and university student studying for arts and science degrees in philosophy and mathematical modeling. Living on the picturesque Bellarine Peninsula on the southeast coast of Australia, she’s deeply passionate about salt water and amazing coffee — even though she’s not allowed to drink it. Above all else, she loves traveling the world! Diagnosed with stage IV lupus nephritis at 20, she’s determined to not be defined by her autoimmune condition. Using writing as a medium for self-expression, she hopes to share her life and journey to both raise awareness and support others in similar situations. A big believer in the concept of dialectics, she loves sharing and hearing unorthodox, sometimes controversial, views. She’s quirky by choice, inquisitive by nature, and smiling always!
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3 comments

  1. christy casusol says:

    I thought my extreme daytime sleepiness was a result of lupus fatigue, but after a sleep study I found out I also have narcolepsy, which is also autoimmune. It may be worth it for you to get a sleep study to make sure its only lupus going on.

  2. Donna Hogg says:

    The post describes my life. Between my SLE and the methotrexate, I reach a zombie like state and resemble the cast of the Walking Dead. I take the chemo shot on Friday, which means I have extra exhaustion for several days during the weekend. I sleep twelve hours and get up needing a nap. My husband is amazing because he knows I get up late and go to bed early to be somewhat functional. During the week, I get up early to go to work, on the days I can make it, and leave early only to go home and crash on the couch. I too look on Instagram and Facebook when I had it and feel like life is passing me by. I want to do all the things I used to do before the wolf consumed the woman I used to be, but I try to remind myself that the woman behind the wig and fancy makeup designed to hide the spotty hair and raw face is still the same vibrant soul I’ve always been. I know she is there – she is just too tired to come out and play too often. I’m learning to be grateful for the good days and thrilled with the exceptional days.

  3. Joan says:

    I’m still working full-time, but barely. It takes all my energy and leaves nothing for a personal life. I rarely go out to dinner or a movie after work or the weekends. Groceries I have to pay extra for to have a service get them and deliver them to my house. My home is a disaster. Cleaning leaves me breathless and weak and exhausted. I sleep my weekends away and some nights I’m ready for bed at 7:45. There are days at work that my lunch hour is an hour long nap in the car. I had always enjoyed a nice little nap, but now they are a necessity. And most times I resent them. At least it gives me quality snuggle time with my cat who loves it when I have to take a nap!

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