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Much of the immune system lives in the gut, so treating the digestive symptoms of my ME/CFS probably aided my overall improvement. The three most helpful treatments were D-Ribose, digestive enzymes, and acupuncture. D-Ribose, a special sugar, was originally recommended to me to boost my energy, but every time I’ve tried weaning off it, I’ve had loose stool. I read about digestive enzymes in Dr. Roger Murphree’s book on beating fibro and CFS. I take a capsule before my biggest meal of the day and two if I’m eating a rich restaurant meal. The third treatment, acupuncture, has proved its benefits for many symptoms besides pain. There are reasons it has remained in use in both the Western and Eastern hemispheres for centuries. It took longer than D-Ribose to begin working, but it definitely helped once I felt the effects. These days I consult my doctor of Chinese medicine maybe once per year. I still have trouble with digestive symptoms now and then, but it’s usually when I’m eating rich foods or under great stress. It’s not like the days when I lost 10 pounds in two weeks and spent an hour a day in the bathroom. I have found these three treatments much more helpful than any diet I’ve tried. Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to educate health care professionals about patients’ experiences. To receive quarterly updates from her, email darla.nagel {a} gmail.com.
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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.
“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.
“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.
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.
 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 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.
Lesson 3: Trust yourself more than you trust health care professionals. You know your body better than anyone because you’re the one living in it. Lesson 4: Don’t use YouTube or the Internet to learn how to do medical procedures. I hit a nerve and nearly passed out when I gave myself a shot without medical supervision. Three more lessons are coming in the countdown to Lightening the Shadow. 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.
Lesson 1 for life with #chronicillness: Examine your medical records to see if there’s an abnormal result the doctor missed or something he or she is trying to hide. Lesson 2: Compile illness timelines for yourself and for physicians. What symptoms started when? When did you start and stop treatments? When did you have each diagnostic test? More lessons coming soon as part of the countdown to #myfirstbook. Lightening the Shadow will be released September 6! Darla Nagel is a copyeditor and writing tutor with an invisible chronic illness. If you want to receive quarterly updates from her, please email darla.nagel[a]gmail.com. Thanks for visiting!
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.
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Darla Nagel
Darla copyedits books and tutors writing while living with an invisible chronic illness. Categories
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