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Of all the treatments I’ve tried for ME/CFS, low-dose naltrexone is the best in my particular case. (Remember, every ME patient is different. Consult a knowledgeable doctor before trying any treatment.) I take a nightly 3-milligram dose of the drug, which alters brain chemistry. Naltrexone is somewhat similar to the drug that’s been in the news often lately, the lifesaving naloxone, and is also taken for pain relief and (with bupropion) appetite suppression/weight loss. Within two weeks of beginning treatment, my brain fog, my most troubling symptom, was gone. My physical energy also got a boost, which allowed me to have an actual career and with less postexertional malaise. I experience no side effects. That alone is highly unusual for me, given my history of near-disastrous results with antidepressants, anti-inflammatories, and antibiotics. A final advantage of naltrexone is its cheap cost compared with some other ME treatments. I get it compounded in mid-Michigan for about a dollar a pill. Many thanks to “Dr. Special” for allowing me to try this treatment and making sure I continue to have access to it!  Naltrexone, circled, stands out from current treatments. 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{a}gmail.com.
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“Although the world is full of suffering, it is also full of overcoming it.” —Helen Keller 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 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.
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.
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Darla Nagel
Darla copyedits biomedical research while living with an invisible chronic illness. Categories
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