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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.  Source: Flickr Creative Commons
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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.
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.
I self-published Lightening the Shadow in print and e-book versions through IngramSpark with worldwide distribution in September 2018. This is what it cost and the royalties I'd made as of year-end 2018. I hope this helps others who are thinking about self-publishing. Ask me any questions in the comments.  Publishing costs for Lightening the Shadow Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to educate others about our experiences. If you'd like to receive quarterly updates from her, email darla.nagel {a} gmail.com.
“Don’t let life happen to you; go happen to life!” —Crystal Paine, owner of MoneySavingMom.com Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to educate others about our experiences. If you'd like to receive quarterly updates from her, email darla.nagel {a} gmail.com.
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Darla Nagel
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