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“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.
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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.
Also called a “crash,” postexertional malaise means sudden worsening of physical and/or cognitive symptoms of myalgic encephalomyelitis at some point after physical or cognitive exertion. Example: I drive 60 minutes and 10 minutes after arrival must lie down because of exhaustion and a pounding headache. The symptoms and interval between exertion and malaise onset vary among patients. In any case, the worsened symptoms are worse than what healthy people feel after “overdoing it.” Ways to slightly lessen the effects of postexertional malaise include resting extra before and after the exertion and respecting the limits of one’s normal energy budget. 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. 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.
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.
 Darla Nagel signs Lightening the Shadow I was honored to help make history for Baker College of Flint—its first book signing! Here I am with President Wen Hemingway and bookstore mascot Wilson. Thanks to everyone who made this possible! #whereswilson #BakerCollege Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to enlighten others on our experiences. If you want to receive quarterly updates from her, email darla.nagel {a} gmail.com.
You're all invited to this event at Baker College of Flint Tuesday, Oct. 23! https://www.baker.edu/about/get-to-know-us/events/lightening-the-shadow-book-signing  Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to enlighten others about our experiences. If you want to receive quarterly updates from her, email darla.nagel {a} gmail.com.
When I first went to college, it seemed like Mom could only say, “Be careful.” When after years of illness I started entering remission, again, all she could say was “Be careful.” When I visited my ME specialist a few weeks ago and told her how much better I was, she was delighted but said...wait for it...“Now be careful. Don't overdo it.” I know. But there's so much I want to do and should do. I don't think I ever fully broke the habit of being an overachiever. I just switched to being the best patient I could be. Now that overachieving streak is growing stronger and threatening to reverse the progress that I've very slowly made over the past few years. The rule of pacing is to know how much energy you have for the day and exert yourself only that much. Underestimate that amount; never overestimate. Being careful to pace may not always be fun, but it's far better than crashing or relapsing. Now I will do my Mom impersonation: Be careful!  Photo: Greyerbaby, Pixabay 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.
 Among all the noise about how to live a healthy lifestyle, there needs to be a clear, moving voice on how to live a chronically ill lifestyle. Lightening the Shadow is now available in print and e-book versions. Read this medical mystery with encouragement for patients and education for doctors: https://www.amazon.com/Lightening-Shadow-Diagnosing-Invisible-Chronic/dp/069214949X/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1535920310&sr=8-1 Nothing will improve for patients with invisible disabilities if we don't come out from the shadows and shed light on our needs. If you like this book, review it online and share it with a doctor. Thanks for following this book's progress! Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to encourage patients and enlighten health care professionals. If you'd like to receive quarterly updates from her, email darla.nagel [a] gmail.com.
The book won't launch today as planned, and I'm aware that Lightening the Shadow is showing as unavailable at Amazon and Barnes & Noble. There was a production error that I'm having fixed. Check back Tuesday, Sept. 11! I couldn't let the world read a book that wasn't perfect. Happy Friday, and thanks for your patience! 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.
The countdown to Lightening the Shadow is winding down! 5. There’s nothing wrong with asking for major help in the face of life-changing events. Independence is an American value, not a law. 6. Accept the limitations chronic illness imposes and your new life and identity. 7. Find a way to contribute to society or your caregivers. This is last because you need to manage your illness first, but helping out even from bed has made me more content. Come back tomorrow! 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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Darla Nagel
Darla copyedits biomedical research while living with an invisible chronic illness. Categories
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