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! 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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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!
The millions of myalgic encephalomyelitis patients missing out on life need millions more in research funding. Tell that to the director of the National Institutes of Health (pictured below) here. Much as I like the song "A Million Dreams," it's "gonna take" more than dreams to improve patients' lives and unravel the cause of this disease. Learn more about myalgic encephalomyelitis here. 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.
"When you accept that you are chronically ill, the energy you used to exert fighting with yourself can be spent fighting for yourself." —Trisha, patient, in the book What Nurses Know...Chronic Fatigue Syndrome by Lorraine Steefel 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.
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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