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To mark #MillionsMissing and my tenth illness anniversary, here are the second five of ten things I would have done if I had not developed myalgic encephalomyelitis. If I had remained healthy, I would have
 Learn more about life with ME in the book Lightening the Shadow. Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to enlighten health care professionals on patients' experiences. If you'd like to receive quarterly updates from her, email darla.nagel {a} gmail.com.
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Ten days before #MillionsMissing and seven days before my tenth illness anniversary, I’m reflecting on ten things that I would have done if I had remained healthy. Here are the first five. If I had remained healthy, I would have
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.
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.
A swimming workout (moderate intensity) has left my arms and shoulders tender and weak. I know back when I was housebound that I lost muscle that I'm never going to regain, but every now and then I try anyway. Every time, it hurts. It saps my energy. Being physically inactive has an array of consequences besides postexertional malaise. If you are able to move, I think you should do so within your personal physical activity limits.  Workout. Source: 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.
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.
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.
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.
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Darla Nagel
Darla copyedits biomedical research while living with an invisible chronic illness. Categories
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