CFIDS (Chronic Fatigue Syndrome). Ken Anbender. 1997.
I’m not entirely sure how I’m writing right now. Today [Monday] I went to my endocrinologist for an appointment I would’ve rescheduled if I hadn’t already done so three times in as many months. It was the second time I’d left the house in 2018. The first was six days ago for a podcast taping.
The fingers on my left hand won’t stay still. A burning sensation emanates from my lower back and sends sparks of pain to every reach of my body. I’ve smoked twice since returning from the doctor. It’s dulled the pain enough that I’m not entirely focused on it; it’s also made it difficult to concentrate on anything else for very long. I haven’t left the smoked-out basement; the cold keeps the sweating at bay and numbs me a little.
I’d have a hard time focusing regardless. I’ve swung between diurnal and nocturnal multiple times this week. I slept until 11 am on Saturday, stayed up until 10 am on Sunday, napped until 2 pm, when I needed to take a dose of two medications, crashed from 4-10 pm—even though my infinitely understanding girlfriend came over at 7—then managed a semi-normal 1-to-10 am sleep last night. I have no idea when, or if, I’ll sleep tonight.
Over the last couple weeks, I’ve been unable to do my job even though I can do it entirely from home. It takes a high level of effort and concentration to do something as simple as bringing the dishes down from my room. I work if I feel up to it. The more formulaic posts, like previews and recaps, are easier to wrap my head around than the analytical stuff I usually prefer.
If I don’t work, the most stimulating thing I’m capable of doing is play my PS4, and even then I often need to turn it off or only play parts of games with no bright lights or sudden movement. (Thank you, NBA2K franchise mode.) I often play with the sound off or calm music on instead of game sound. It’s a needed distraction that’s less passive, and therefore more effective, than watching TV. I wish I had the energy and focus to read a book instead. I spend most of the day somewhere short of conscious.
I lean—too hard, it feels—on my housemates and girlfriend and family to keep me from living in filth.* This isn’t an exaggeration. At my lowest point in college, when I lived alone in a basement apartment before I was diagnosed, I reached into a bag of chips I’d been eating out of and pulled out a maggot.** The guilt of not doing my share around the house nags at me. My housemates have lives and full-time jobs and problems of their own. Cleaning up after a 30-year-old wasn’t in the lease. I also feel guilty that people worry about me, though apparently not quite enough to not write this piece.
[Hit THE JUMP]
This isn’t the first time I’ve bottomed out. In fact, I’m used to this feeling; it’s just more acute on this day than most. I may feel this way for several more weeks, perhaps months. I may get worse, lose some of the 25 pounds I worked so hard to put back on, fall into an extended depression. I may start improving tomorrow.
This is my reality. It has been, in some form, the entire time I’ve worked here. While these last two weeks have been particularly rough, these symptoms, and so many more, are everpresent. It’s easy to overlook. As it often goes with auto-immune illnesses, I look no worse for wear. Even my dad, who had CFS for most of my life, doesn’t often pick up on it when I’m barely hanging with a conversation, and I learned how to give my cues from him.
I’ve written about my health before. Each time, though, I’ve held back the details of how I’ve really felt. I’m putting the raw side out there now because, for one, I’m comfortable enough in my life to have it out there, which I couldn’t have said even a couple years ago. For another, it’s important that people start hearing the full reality that so many people face every day without having this type of platform.
As much as it may seem gratuitous, there may be someone out there who reads this and realizes they’re not going crazy, that people really do feel this way and manage to carry on.^ I want to be a resource to others with similar illnesses to the extent I'm capable. My DMs are open. I check my email even if I'm terrible at answering 95% of it. If you need help coping, or just want someone to hear your story who might understand, I'll do everything I can to make myself available.^^
Dancing Before The Tree of Life. Ken Anbender. 2015.
Even in those earlier, sanitized writings of mine, another part of living with CFS leaks between the lines: the cycle of hope and despair, the need to cling to the next potential cure, the devastation when it fails.
Yet I’m right back in it. A couple years ago, my dad started seeing a CFS/fibromyalgia specialist based in Alabama—this is how far one must search for the right doctor—whose methods are based in science and Western medicine (you’d be amazed how often this isn’t the case). After nearly three decades of serious illness, long after we'd come to terms with the possibility he may never have his full health, he's been healthy for a year now.
I fly down with him to see the same doctor in a little under two weeks, and once I’ve visited the specialist can start prescribing me medication to deal with the pain. Until then, I’m hanging on, and trying to give myself as much room as I can to accommodate my health.
This time it’s going to work. I believe because I have no other choice.
*I also lean too hard on my coworkers to cover for me and I’m truly lucky to work for someone who is so patient with me. I left this out of the copy he looked over.
**I’ve never told anyone that story before.
^I was inspired by the airing of Unrest, a PBS documentary airing this week that a woman with CFS created largely while working from her own bed. I hope some of you will find the time to watch.
^^I cannot ignore or sugarcoat the number of us lost to suicide. If you are living with something like this and getting by, you are making a heroic day-to-day effort to do so, and you should never forget that. I’m here in large part because my father hasn’t allowed me to forget it either. If you ever feel suicidal, for any reason, call the National Suicide Prevention Lifeline.
[Revised at 3 am on Tuesday]