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Pacing: strategizing time and energy to avoid overexertion. Tips for doing this:
Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to receive quarterly updates from her, sign up by emailing darla.nagel@gmail.com.
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I self-published Lightening the Shadow in print and e-book versions through IngramSpark with worldwide distribution in September 2018. This is what it cost and the royalties I'd made as of year-end 2018. I hope this helps others who are thinking about self-publishing. Ask me any questions in the comments.  Publishing costs for Lightening the Shadow Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to educate others about our experiences. If you'd like to receive quarterly updates from her, email darla.nagel {a} gmail.com.
“Don’t let life happen to you; go happen to life!” —Crystal Paine, owner of MoneySavingMom.com Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to educate others about our experiences. If you'd like to receive quarterly updates from her, email darla.nagel {a} gmail.com.
Both terms refer to the limited energy of patients with myalgic encephalomyelitis and other greatly fatiguing illnesses. “Energy envelope,” borrowed from the practice of limiting spending by using only the amount of cash set aside in an envelope for a period, refers to how much energy a patient can exert in a period without worsened symptoms. Spoon theory is best explained by its first publisher. If a spoonie (patient) runs out of spoons (energy), worsened symptoms result. I hope this makes caregivers and health science students more understanding of myalgic encephalomyelitis patients’ limitations and invisible struggles. Ask me any questions in the comments. #mecfs #pwme #invisibleillness Darla Nagel is an editor and writing tutor who has an invisible chronic illness. If you'd like to receive quarterly updates from her, email darla.nagel {a} gmail.com.
Brain fog is the inability to think something through in a connected way and to concentrate, with short-term memory loss on the side. “Brain barricade” would better describe it. Going from sitting to standing takes not only muscles but also cognitive attention. Deciding what task to do next takes the ability to imagine “What if…” Brain fog can paralyze the mind the way a broken back can paralyze the limbs. Messages just don’t go through. If the brain can’t communicate with the body, daily activities, let alone intellectual pursuits, are nearly impossible. I hope this makes caregivers and health sciences students more understanding of myalgic encephalomyelitis patients’ limitations and invisible struggles. Ask me any questions in the comments. Next time I’ll explain postexertional malaise.  Brain Brick Wall (image created by me) Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to receive quarterly updates from her, sign up by emailing darla.nagel@gmail.com.
I'm feeling better than I have in years and taking on more work than ever. However, the metaphor of my ME/CFS as a heavy shadow remains apt because now instead of being one me, it's lingering behind me, following me. It won't go away. It's always there. I keep looking back at it to see how big it is. What will it do next?  Photo: Damien Walmsley, Flickr Creative Commons Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to receive quarterly updates from her, sign up by emailing darla.nagel@gmail.com.
Breath & Shadow published—and paid for—my submission of an excerpt from Lightening the Shadow! Read it here: https://www.abilitymaine.org/BS2018Summer/%22Instant-Relief%22 I thank the staff. I also got an email from Kaleidoscope expressing interest in a third excerpt, but a new editor-in-chief is about to come on board. He or she will need to review my excerpt and make the final decision. As for the full book, it's nearly ready for production and has benefited from the work of cover designer Michael Brady Design and proofreader Sharyn Mathews. Launch date: September 6, 2018. Thanks for following my book's progress! Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to receive quarterly updates from her, sign up by emailing darla.nagel@gmail.com.
Myalgic encephalomyelitis patients from seven countries sent recordings of themselves singing the chorus of "Blowin' in the Wind" so that another patient could produce a parody of the song. Hear our (yes, I'm one of the singers) protest against flawed theories and research and insufficient funding and understanding of ME. Thanks to all who participated. Here's to the power of music! Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to be alerted whenever she writes a new post, sign up by emailing darla.nagel@gmail.com.
One ME activist has turned to libraries to spread ME awareness. Cindy Downey has donated copies of the award-winning documentary Unrest, and in this article I wrote for #MEAction, she shares her advice for donating. Thanks, Cindy, for inspiring me to donate a copy of Unrest locally!
Patients with myalgic encephalomyelitis are more than tired (or worse, sleepy). The unfortunate name chronic fatigue syndrome has misled doctors, researchers, and the public for too long. I never use the word tired to describe what I'm feeling. I say exhausted or if I'm feeling poetic, like I'm unplugged or like I slammed into a brick wall. Dr. Zaher Nahle, who unfortunately has left his position at Solve ME/CFS Initiative, understood this:  Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to be alerted whenever she writes a new post, sign up by emailing darla.nagel@gmail.com.
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Darla Nagel
Darla copyedits biomedical research while living with an invisible chronic illness. Categories
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