By edie.claire
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April 27, 2022
If you have zero interest in medical issues , particularly someone else’s, feel free to skip this section now. But if you’re curious why my ability to write books seemed to slam to a halt two years ago even as I somehow kept managing to post on Facebook and write other things, please read on. My particular brand of “chronic migraine with aura” isn’t quite what most people envision. I am fortunate enough not to have an extremely painful headache on a near daily basis (although some people do.) What I do have, even after years of treatment by a certified headache specialist and all the latest and greatest pharmaceuticals and alternatives both, is a never-ending string of migraine symptoms that wax and wane unpredictably. When migraines are chronic , it’s no longer a situation of a specific trigger causing a specific attack. The brain is used to migraining, it likes to go there, it can do so at the drop of a hat, and no amount of obsessive tinkering to remove specific triggers in diet or lifestyle is going to make it magically change course. The “attacks” are no longer distinct, but blend into each other in an endless, undulating stream. I can have any level of head pain, nausea, light sensitivity, skull pressure, blurry vision, and cloudy thinking at any time, sometimes all together, sometimes in tandem. Fortunately, with my meds available, I only rarely have severe head pain. It’s equally rare for me to go a whole day with no symptoms at all. But on most days, the carousel of rotating symptoms is mild and largely manageable. So why can’t I get another book written? The answer can be put into two words “Brain Fog.” This symptom is difficult to describe, even for a writer. Trying to think clearly with brain fog is like trying to swim underwater through molasses. Your short-term memory is crap. You forget the end of a sentence while speaking the beginning of it. You can’t think of the word “calendar” even as you describe a printed thing that shows you the months and days in chart form. Your mind may concentrate intensely, but not on what you want it to. You can surf around on the internet for hours, crawling down all sorts of rabbit-holes, but cannot process the directions for taking an at-home Covid test. You can force yourself to sit down and write a scene for a book, but when you read it the next day, it’s lifeless and boring and uninspired. You feel you should be able to fix it, but have no idea how to do so. If you force yourself to try, you’ll come back the next day to find it worse than before. My migraines went chronic in the fall of 2017. I was somewhere in the middle of the first draft of Glacier Blooming , early in 2018, when I finally decided to give up. I had the ideas, but I couldn’t get them on paper. The writing didn’t sparkle. It just wasn’t right. And I refused to publish something that wasn’t up to my usual, self-imposed standard. Within months, however, a minor miracle happened. A whole new class of migraine preventatives came onto the market, the anti-CGRP monoclonal antibodies. I was among the first patients in the country to start taking monthly injections of Aimovig. Two weeks later, it was as if I’d been living under an overcast sky for as long as I could remember – and the sun came out. The clouds thinned and blew away. I could think again. My head was clear! I could concentrate. I could create. I could write. So I did. I pulled out the draft of Glacier Blooming and felt like it was written by another person. Ick! Terrible! Not only were the flaws now obvious, but so were the fixes. I dove into editing, threw out huge chunks of uninspired dreck, wrote all new chapters I was proud of, and published it in record time. I then went on to write Never Nag Your Neighbor , ecstatic to believe that I was cured. The awful fog had been a bad patch I could now forever put behind me! I published the mystery and went back into romance, taking beloved characters from Glacier Blooming and bringing them back to life in Tofino Storm . I was near the end of the latter when the brain fog started creeping back again. My neurologist increased my dosage, and it helped for a month or two. Then the door slammed. I was right back when I started. I had completed writing Tofino Storm with a clear head, but finishing up the editing and publishing process – over Christmas of 2019 -- was like pushing a boulder uphill in a sandstorm. By the time Covid hit in the spring of 2020, I was mentally and emotionally exhausted. I was migraining regularly again. I was dispirited and miserable. There was no question of starting another book now, not when I knew I might never be able to finish it. I tried to keep the book business alive with projects I could manage by working off and on, like redoing my website and writing short, soap-opera style scenes for Kindle Vella. But social media was killing me . The nature of the beast for authors is being constantly available to answer comments, remaining upbeat and positive, presenting a more-perfect-than-life face to the public, and posting and sharing new content on a regular basis, all of which I found soul-crushing. Putting so much of myself “out there” had always been fundamentally uncomfortable for me, as I am by nature a private person. But once I wasn’t writing anymore, the direct interaction with readers that was always my favorite part of the process turned into a never-ending marathon of delivering bad news. The same flattering question that used to fill me with pleased excitement -- “When does your next book come out?” – now only made me feel sad. So I made the tough (and commercially suicidal) call to get off social media altogether. Hence, the creation of Cafe Eclaire. Aside from enjoying the excuse to eat an eclair, I liked the more private, intimate feel of being able to host the content on my own website, and the once-a-month format was infinitely easier to manage. Predictably, reader participation dropped off over time, and I began to space the Cafe Days out farther and farther. I tried a second monoclonal antibody, Emgality, but it didn’t seem to be helping at all. My creative energy was limited. I had no good news to share. In the summer of 2021, I found hope again. The third monoclonal antibody I tried, Ajovy, was working. My headache frequency dropped significantly; I had more good days, more energy. But even as I felt better physically, I noticed something distressing. The sky was still overcast. Even with occasional holes in the clouds, the sun stubbornly refused to shine. Brain fog. Why did I still have it? Perhaps it was a matter of sleep deprivation . I had noticed my insomnia getting worse, my quality of sleep steadily deteriorating. I would lie awake tossing and turning, note the time on an hourly basis, wake up too early. So I committed to one of the most effective remedies known: a course of Cognitive Behavioral Therapy. I made some progress, but not enough, and my therapist recommended I consult my PCP to look for a medical cause. I did, and we found two. Turns out I had both subclinical hypothyroidism (Hashimoto’s disease) and obstructive sleep apnea. Either of which can cause -- guess what? – brain fog. What I’ve learned through this unfortunate saga is that brain fog, which until quite recently was not taken seriously by the medical profession as a real symptom of anything, is in fact a symptom of a wide variety of diseases and conditions . Migraine, hypothyroidism, and sleep deprivation can all cause it. But so can Covid-19, Lyme’s disease, and a whole host of autoimmune diseases that predominantly affect – guess who? – women. Consequently (ahem) these conditions have historically been understudied, underfunded, underdiagnosed, and undertreated. Even now they are largely still misunderstood. (For a fascinating foray into this topic, I highly recommend reading The Invisible Kingdom by Meghan O’Rourke.) One thing that is clear: a person with one autoimmune disease is very likely to have more. Now that I’ve been diagnosed with autoimmune thyroiditis, it’s entirely possible that some part of my brain fog is coming from an autoimmune source I don’t even know about. The last part isn’t too encouraging. But whatever the long-term future holds, treating my sleep apnea in the last month has at least blown another hole in the clouds. There are no guarantees. But for now, the sun is shining.