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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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 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.
Breath & Shadow published—and paid for—my submission of an excerpt from Lightening the Shadow! Read it here: https://www.abilitymaine.org/BS2018Summer/%22Instant-Relief%22 I thank the staff. I also got an email from Kaleidoscope expressing interest in a third excerpt, but a new editor-in-chief is about to come on board. He or she will need to review my excerpt and make the final decision. As for the full book, it's nearly ready for production and has benefited from the work of cover designer Michael Brady Design and proofreader Sharyn Mathews. Launch date: September 6, 2018. Thanks for following my book's progress! 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.
Being cared for can cause guilt, but it shouldn’t. Guilt darkens your mood and drains your energy, widening rather than bridging the gap between your abilities and your caregiver’s. There’s no need to feel guilt if you did nothing to cause your disability. You did nothing wrong. You’re doing the best you can with what life dealt you. Your caregiver loves you, and love is the greatest motivator and burden lifter there is. If your roles were reversed, you wouldn’t grudgingly care for your caregiver, so don’t talk yourself down and make yourself feel like a burden. You’re worth being cared for. Yes, you are! This is the expanded version of what I told my friend with a progressive neurological disorder when she said something negative about having to live with her parents/caregivers. Let go of the guilt and work on something else that you can change. 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  Photo: 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 emailing darla.nagel@gmail.com.
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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Darla Nagel
Darla copyedits books and tutors writing while living with an invisible chronic illness. Categories
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