Dispatch From A Frigid Basement On Monday Afternoon, I'm Pretty Sure
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]
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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.^^
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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.
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*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]
January 9th, 2018 at 12:24 PM ^
January 9th, 2018 at 12:26 PM ^
Who think very highly of you and are pulling for you.
I love that you are going wherever you need to go, in order to find effective treatment. Glad to hear that your dad has been enjoying better health for the last year; you're next!
January 9th, 2018 at 3:05 PM ^
I'll tell you why your co-workers "put up" with you, Ace. It's because you're good at your job. I would imagine your housemates and gf "put up" with you because you're not a douchebag, either. Hang tight and let's hope at least one good thing comes out of Alabama.
January 9th, 2018 at 12:26 PM ^
Im sorry for what youre going through Ace. Keep hanging in there man.
Also, and im not sure if youll be able to see this but if you do then maybe give Kratom a try for the pain. It helps a lot of people with pain.
January 9th, 2018 at 12:27 PM ^
Dude.... putting yourself out there like this is doing more than you will ever realize. It may seem like nothing to you, in fact many people resist doing what you just did because they don't want to be perceived as seeking attention. Yet, so many suffering their own battles never realize it until they read about someone else's. Knowing that you aren't the only one fighting a battle is what gets a lot of people out of their rut.
Being involved in the veteran community, where we lose an average of 22 a day to suicide, has made me realize how wide spread depression is.
Thanks for sharing.... God bless you.
January 9th, 2018 at 12:27 PM ^
January 9th, 2018 at 5:32 PM ^
My wife has IBS (and IBD, but is in remission currently). Low FODMAP has been helpful for her, it's strict but can help! Good luck!
January 9th, 2018 at 12:27 PM ^
When Seth did the last basketball recap instead of Ace, I feared his health has taken a negative turn once again. As someone who has a sister fighting cancer, I know how much of a strain that can put on one's entire family. I wish you and your family the best going forward. Michigan sports are simply a game we play/watch as a distraction from reality and are trivial and insignifcant in comparison to the health and well being of those we love. Stay strong, love your family, and fight like Hell. We'll be here waiting patiently (well, almost patiently) for your return.
January 9th, 2018 at 12:28 PM ^
but I've been there. Do the best on the days you can and hang in there on the days you can't. I wish you nothing but the best and hope this appointment is the help that makes your health better.
January 9th, 2018 at 12:28 PM ^
January 9th, 2018 at 1:49 PM ^
Be well, Ace! I'm sure that you know this, but way more people read your work than frequently comment. I can only speak for myself, but your writing brings joy and entertainment. Excited for many more years of your commentary!
January 9th, 2018 at 12:30 PM ^
I am glad you are sharing your story. I wish you only the best
January 9th, 2018 at 12:31 PM ^
January 9th, 2018 at 12:33 PM ^
I do feel like this site is community (a sometimes snarky one, but a community all the same), which is reflected in the earlier responses to your courageous and moving post. I wish that I could say something beyond what has been said above, but I will say that I hope these messages (and mine) of support and concern provide some comfort and that the doctor in Alabama can provide some relief. You are in my thoughts and prayers.
January 9th, 2018 at 12:32 PM ^
January 9th, 2018 at 12:32 PM ^
I hope writing about it gives you some measure of control and some measure of catharsis. Get better, man, and hopefully we all get a chance to read more of your work for a long time to come.
January 9th, 2018 at 12:34 PM ^
January 9th, 2018 at 12:36 PM ^
Hang tough man, I dont know you personally but do see you as a friend and appriciate all you do!
January 9th, 2018 at 12:37 PM ^
and we're with you tomorrow. Take care of yourself and thank you for sharing in the hope of looking out for others as well.
January 9th, 2018 at 12:38 PM ^
Wow man! Thank you for sharing Ace. We are thinking about you and focusing on a fully-restored healthy body.
January 9th, 2018 at 12:38 PM ^
I feel the pain you are going through, having watched(and still watching) my wife struggle with Rheumatoid Arthritis and the effects that it brings. I appreciate you and the work that you bring to the blog. I'm thankful that you have a support system. Prayers to the medication working for you also.
January 9th, 2018 at 12:46 PM ^
January 9th, 2018 at 12:52 PM ^
She would go weeks working as hard as anyone ever did with energy and vigor, and then I'd get an email and she would be out for a few days. What got me was that her job was 95 percent computers, and her fingers -which were permanently bent-- must have been killing her most of the time. Never, ever, ever complained about it.
January 9th, 2018 at 12:39 PM ^
Sorry you're suffering like this Ace. I genuinely hope you get the treatment and help you need, and I know you're going to come through the other side stronger and happier.
January 9th, 2018 at 12:41 PM ^
You make the world a brighter place. Looking forward to a healthier future for you
January 9th, 2018 at 12:44 PM ^
It takes guts to be this honest on the page, or in any fashion for that matter. Thank you for your great work, good luck as you continue to fight chronic illness, and know that you are appreciated.
January 9th, 2018 at 12:45 PM ^
January 9th, 2018 at 12:46 PM ^
I don't really know you, and chances are I will never meet you in person. But damnit all, I hate that you have to go through this and I wish that I could do something to make your day or your life better. Hang in there, man.
January 9th, 2018 at 12:47 PM ^
January 9th, 2018 at 6:37 PM ^
January 9th, 2018 at 12:47 PM ^
Best wishes Ace. If petting me will help I can come over. I won't even bite you that much. Feel better soon.
January 9th, 2018 at 12:48 PM ^
January 9th, 2018 at 12:50 PM ^
My thoughts are with you as you travel to this new Dr. I'm sorry you've been dealing with this.
Have you tried any non-modern medicine and research based treatment?
Get better, dude.
January 9th, 2018 at 12:50 PM ^
but after reading your account I realized it's ridiculous compared to real things like what you're going through. Fervently hope the doc in Alabama can make things better for you.
January 9th, 2018 at 12:52 PM ^
If I've learned anything these past few weeks, it's that you don't want co-specialists handling your care...too many cooks in the kitchen. Pick one, and prosper.
In more seriousness, get better soon, Ace. We're definitely pulling for you.
January 9th, 2018 at 12:55 PM ^
I hope you find a foothold very soon.
January 9th, 2018 at 12:57 PM ^
I hope you get the care you need to feel better.
January 9th, 2018 at 12:57 PM ^
January 9th, 2018 at 4:04 PM ^
keep getting up, please. I hope you turn a corner & have more positive days ahead.
January 9th, 2018 at 12:59 PM ^
You're a great writer and I enjoy your work. Just keep being strong. I hope you have a great and productive trip to see your CFS specialist and are feeling much, much better soon.
All the best
RBL
January 9th, 2018 at 1:00 PM ^
That's deep, Ace. Thank you so much for sharing it with us. Posts like these are grim (but necessary) reminders that football is just a game. Us complaining about a team with a bad offense is nothing compared to what it sounds like you go through on a regular basis. This shit is real. The board (myself included) may act like a bunch of adolescent dickheads after a bad game, but know that we're all behind you and supporting you. You're an integral part of this community.
While I'm a bit surprised that there is a doctor in Alabama who understands medicine as being something other than voodoo or holy water (I kid, I kid), I'm sure you'll be in great hands down there. Hope you come back refreshed and rejuvenated!
January 9th, 2018 at 1:02 PM ^
Keep up the good fight Ace!
there's a ton of people who are wishing you well and keep you in their thoughts...
Hoping this doctor can set you on the path to normalcy.
January 9th, 2018 at 1:05 PM ^
Man this is the most raw, real and stunningly beautiful allegory about Michigan fandom the last two decades that I have ever read. Good writing.
January 9th, 2018 at 1:05 PM ^
Feel better, man. You bring a lot to this blog (and the podcast) and do it with grace and style.
I am reminded of one of my favorite authors (Lauren Hillenbrand) who has CFS (read here). Somehow people who are in such tough conditions can indeed produce wonderful things.
January 9th, 2018 at 1:05 PM ^
your struggle to previously find a proper diagnosis, and now, helpful treatment, reminds me of a great book I read about a year ago. "Brain on fire: my month of madness". great quick read that can really give some insights to those in such a helpless situation.
Appreciate you being so up front with the blog on this personal issue. If it helps even just one person, it's worth it. thoughts going your way brother!
January 9th, 2018 at 1:06 PM ^
Thank you for sharing your story Ace and I'm glad you feel comfortable putting it out there for your own benefit and despite some of the negativity that oozes into this website from the readers at times. It helps rally your avid followers to support you in any way we can and it helps all of us put sports in perspective. Wishing nothing but the best for you.
If you travel through the Huntsville area, stop at Blue Pants Brewery as it is owned by members of my family who were both in the Michigan Marching Band in the early 2000s. A good beer and good people may help on your trip.
For the rest of us we'll use your piece to remember that it is okay to be frustrated by a coach, a player, or a ref....but remember that sports are only a small part of our lives and we should savor the good parts as much as we can. Let's go kick Purdue's butt tonight and put a smile on your face!
January 9th, 2018 at 2:04 PM ^
Mike and Allison Spratley!! Good times.
January 9th, 2018 at 1:07 PM ^
Damn, Ace. Get better man. Stay up brother.
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