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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Today I did something mature. I wrote down
I should've done this years ago. Especially for people with chronic illnesses, our health can change quickly and threaten our lives any day. Even for healthy people, one person's mistake on the road is all it takes to us unresponsive. You don't want your loved ones wracked with guilt over hasty decisions made on your behalf or delaying treatment as they debate what you would've wanted. If you're a Michigander, you can use the same form I used, which I found here. Others can check with their own state bar association or get started with Five Wishes, a format for creating a living will, which is a major part of an advance directive. 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.
“Be there for others, but never leave yourself behind. When you own your imperfections and you embrace your life, you become a better person.” —Dodinsky, In the Garden of Thoughts I interpret “own your imperfections” as “Congratulate yourself every day you, with even a smidgen of dignity, get through an illness-related experience that you’d thought you wouldn’t be able to handle.” Feel free to share a quote that has helped you 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 be alerted whenever she writes a new post, sign up by emailing darla.nagel@gmail.com.
2017 has been a year of progress for ME/CFS patients. We’ve done more to inform government officials and citizens about the severity and reality of ME. Research funding is still insufficient and a cure still elusive, but I’m encouraged by the following events this year:
Merry Christmas, and may next year bring better health to everyone with a chronic illness or invisible disability! 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 e-mailing darla.nagel@gmail.com.
Keep your friends close. Randolph Bourne, a writer from a century ago with a disability, advised cultivating interests and not allowing yourself to feel inferior. He also wrote about the importance of friendship: “Without friends I feel as if even my music and books and interests would turn stale on my hands” (quoted in The Best American Essays of the Century, p. 70). Go hug a friend today, and feel better! 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 e-mailing darla.nagel@gmail.com.
Randolph Bourne, who was born with a physical disability, wrote about 100 years ago, “Do not take the world too seriously, nor let too many social conventions oppress you. Keep sweet your sense of humor, and above all do not let any morbid feeling of inferiority creep into your soul....In a word, keep looking outward; look out eagerly for those things that interest you, for new interests and opportunities to express yourself” (quoted in The Best American Essays of the Century, p. 70). Am I off base, or is this good advice for people with disabilities even today? 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 e-mailing darla.nagel@gmail.com.
The documentary Unrest, which won an award at the Sundance Film Festival, is now screening across the world. Much has been written about the ME illness experience, but until people see it (and come close to feeling it with the virtual reality version), they're unlikely to understand exactly how devastating this disease is. Watch the trailer here: https://www.unrest.film/trailer. See where Unrest is showing here: http://see.unrest.film/showtimes/ 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 e-mailing darla.nagel@gmail.com.
Sudden-onset myalgic encephalomyelitis is like having the rug pulled out from under you and then being rolled up inside it. What is your illness like for you? Photo: Sarowen, 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 be alerted whenever she writes a new post, sign up by e-mailing darla.nagel@gmail.com. Rehmeyer’s experiences embody the saying “Desperate times call for desperate measures.” Patients will relate to her experimentation as she learned to pace herself, to the unhelpful physicians she saw before consulting ME/CFS expert Dr. Nancy Klimas, and to her struggles to work and have relationships while ill. Rehmeyer fulfills the role of advocate well through explaining issues surrounding ME/CFS, such as its name and the damaging PACE trial. Any chronically ill patient has to sift through an array of information online to find valid research and viable treatments, and this process is even more challenging for ME/CFS patients, who often have cognitive difficulties coupled with lack of well-educated or empathic physicians to ask questions of. The amount of detail and scientific facts in the memoir are enough to impress but not overwhelm. The musings related to Christian Science and mathematics, worded for academics rather than patients with brain fog, could be the one drawback of this book. 5 out of 5 stars 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 e-mailing darla.nagel@gmail.com.
For #BedFest, a virtual concert by ME patients, and to commemorate my eighth “illness anniversary,” I read from my memoir, Lightening the Shadow. Here's the opening: I don’t feel tired; I feel like I body slammed a brick wall, not as much in the pain as in the “Ugh, I can’t move or think now” sensation. I feel like I’m five decades older than I am. I feel like I’m unplugged in the dark. I didn’t think it in those words, but that’s what I was feeling as I combed my wet hair in the YMCA locker room after one of my hour-long swims. What I actually thought was Maybe this is more than a cold. I’m whipped, and my legs are sore, even though I didn’t swim as hard today. Swimming rarely made me sore, even after the two-hour-long practices I’d done on the high school swim team. Instead, swimming usually rejuvenated me mentally and physically. I consider it the best form of exercise, and it’s my favorite form because of water’s calming and cooling effect. 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 e-mailing darla.nagel@gmail.com.
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