“Be who you are and say what you feel Because those who mind don't matter. And those who matter don't mind.” —Dr. Seuss Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel {a} gmail.com.
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One year after the launch of Lightening the Shadow, my book for people with chronic illnesses and their healthcare providers, I see hope. I see hope in the form of readers who have opened up to me about their own experiences, of a tiny increase in federal research funding for ME/CFS, and of my continued ability to write and copyedit. If you haven't left a review of the book on Amazon or Barnes & Noble, write one today! Reviews are how writers reach more readers, and there are many more readers out there who need this book. If you haven't read the book, it's never too late to read it! You can get a free sample on Amazon or get a free expanded sample by emailing me. We have the most hope in ending the silent suffering of ME, fibromyalgia, and all other invisible disabling illnesses if we work together in making our experiences known. Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.
What better day to learn about ME than Severe ME Day? Rather than reading stats or a list of symptoms, read a patient's story, written to educate doctors, patients, and those who know patients. You know the name of this patient. My account doesn't take long to read. Get a copy for someone you love, for your healthcare provider, or yourself. Help end the suffering of ME. https://www.amazon.com/Lightening-Shadow-Diagnosing-Invisible-Chronic/dp/069214949X Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare providers and encourage patients. To receive quarterly updates from her, email darla.nagel{a}gmail.com.
You’ve read a lot about ME/CFS and a bit about fibromyalgia and Reynaud’s disease on this blog, but today a friend of mine, Beth Koenigsknecht, takes the floor to describe her chronic illness, Friedrich’s ataxia. Here’s what she wants the world to know about her experience with it:
I was diagnosed with Friedrich’s ataxia and it was genetically confirmed when I was 15. Now I am 33 so I have officially had Friedrich’s for 18 years. However I was diagnosed with heart condition at age 12, which unbeknownst to me was an FA symptom, and was having balance difficulties, so technically I have been FA symptomatic for 20 years. FA is pretty rare so I would be surprised if you had heard of it. Typically Friedrich’s ataxia presents in adolescence which can be anywhere from age 12 to age 18. I know of specific patients showing symptoms as early as age 5 or as old as their 50s but those are not very common. I followed the typical route by being diagnosed with a genetic blood test at age 15 prior to my physically confirmed cardiac condition at age 12. So I started at age 12 having to take a pill every day and go to doctors which actually jumpstarted my interest in science and desire to be a doctor myself. My activity level was accordingly restricted so that essentially meant that I was not allowed to play sports or run around. Which actually fit perfectly with my bookworm status and focus on academics. I preferred to curl up and read a book rather than play outside and I was content not being able to participate in gym class at school where I was allowed to work on my homework instead. And so the next two years went by swiftly until I turned 14 and really started to notice balance difficulties and what I thought of as muscle weakness. My pediatrician agreed and referred me to a physical therapist so that I could work on strengthening. Suffice it to say that that was the beginning of my neurological stuff that resulted in me being diagnosed with this unpleasant disorder that I had never heard of at the time called FA. But again with only 6,500 of us in the US alone and a very minuscule sliver that is practically unnoticeable of the world population in general, is not uncommon to not have heard of it. I have bounced between interest in science, writing, and art through the years. My bachelor’s degree is in neuroscience, followed by a master’s degree in English. I worked as a writing tutor for college students for those five years and then I taught just one writing class during the fall and spring semesters at a community college for the next two years. By then I had discovered that the disorder which initially I thought was not so bad, really just kept getting worse ever so slowly yet at an alarmingly steady pace. It is horrible but what makes mine so different from others is that in FA you remain cognitively intact, yet continue to physically deteriorate until you die in a shortened lifespan. 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
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.
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.
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. 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.
I was honored to help make history for Baker College of Flint—its first book signing! Here I am with President Wen Hemingway and bookstore mascot Wilson. Thanks to everyone who made this possible! #whereswilson #BakerCollege Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to enlighten others on our experiences. If you want to receive quarterly updates from her, email darla.nagel {a} gmail.com.
You're all invited to this event at Baker College of Flint Tuesday, Oct. 23! https://www.baker.edu/about/get-to-know-us/events/lightening-the-shadow-book-signing Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to enlighten others about our experiences. If you want to receive quarterly updates from her, email darla.nagel {a} gmail.com.
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