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 1:13 PM ^
We're all pulling for today to be better than yesterday and for tomorrow to be better than today for you Ace.
It's also worth noting that in the face of something so very real and personal, those rushing to be the first to post whatever take happens to flit amongst the neurons in their heads, to criticize, to demonize, and to opinionate are deafeningly silent. Not that I wouldn't be happy but to listen to the trolls 24/7 if it brought some measure of peace to you, but thank you all the same for the opportunity to put things in perspective. All the best for a complete recovery. In the meantime, you're not alone.
January 9th, 2018 at 1:13 PM ^
Don’t feel guilty about anything. The people in your life love you and only want to see you get better. Feeling guilty on top of the shit sandwich you’re already dealing with is counterproductive at best.
Just know we’re thinking about you out here in cyberspace. Rock on, man. As if you were in a ska band or something, rock on.
January 9th, 2018 at 1:16 PM ^
January 9th, 2018 at 1:17 PM ^
Ace, I applaud you for sharing this. Know that a lot of us will be hoping for you to get better and soon. Hang in there.
January 9th, 2018 at 1:21 PM ^
Good luck on the visit to Alabama in 2 weeks time Ace. Hopefully you are able to get the same relief your father has experienced.
January 9th, 2018 at 1:24 PM ^
Man I feel for ya!!..Sometimes its Gloomy never knowing day to day whats in store. I suffer from the Diabetic nerve shooting pains..Some days its down right debilitating..Its like painful electric jolts that can run anywhere in your body.. like shards of glass...Mostly its feet and legs but also can be face, back head stomach and other places u dont want to know..Never know when its going to happen , frequently at night when Im trying to sleep..There is medication BUT the side affects can be worse than the disease..because its almost every day. I get depressed sometimes but I figured out how to get around that..I start thinking how lucky I am for the all the good things in my life..Great supportive family, 3 boys that make me proud each day..A job that literally takes me around the entire planet and pays me to go and do things I would never be able to do..the ability to take as much time off as I need with no reprucussions..I KNOW its corny but there are silver linings..I learned to be thankful each day Im alive and to enjoy all the little things that one usually takes for granted..Good coffee in morning, when the family gathers and plays euchre or watches Wheel of Fortune together see who can solve first..stupid stuff...My family seldom knows when Im in serious pain cause I just dont want them to feel bad for me and just Carry On!
I hope that you can find your silver linings. they are there Im sure, and you have a entire blog community here that you can lean your shoulder on when Necessary.. I have a shoulder feel free to lean on it...Michigan isnt just sports, its family, its a community looking out for one another when it REALLY matters and can help with a perpective that you are not alone.
You are Brave to share with us and I hope this blog can be some therapy for your heart and soul...
January 9th, 2018 at 1:26 PM ^
All the best wishes Ace! We're praying for you.
January 9th, 2018 at 1:28 PM ^
My prayers to you man, hang in there. I see something similar, but less intense every day at home myself.
My MGo wife has PMR Polymialgarheumatica (sp) Auto-immune similliar to RA. She is in constant pain every day and has been on steroids for two years and now her adreanl system has shut down. She lhas been on LOA from work for a month and will be for a while.
Her neck, hips and thighs are soo painful she can barely get off the couch. She is two years in and there is no end in sight.
I feel for you bro.
January 9th, 2018 at 1:47 PM ^
to you and your family as well.
January 9th, 2018 at 1:29 PM ^
Thanks for sharing so openly, Ace. We're here to support you. You're never a burden. I hope you don't hesitate to lean on this community as much as you need. This what we do for each other.
January 9th, 2018 at 1:30 PM ^
for you. My wife has another auto immune disease-MS. A lot of people, including her parents will say things like, well you don't look sick so get up and do things. The mental and emotional toll of a disease like CFS and MS is way overlooked. Thank you for sharing, it's very courageous of you to share such a personal story...especially finding the maggot!
I'll be insisting that my wife read your piece.
I'm rooting for your trip to Alabama to be successful.
January 9th, 2018 at 1:31 PM ^
January 9th, 2018 at 1:33 PM ^
January 9th, 2018 at 1:34 PM ^
Thanks for sharing with us and all that you do at this site. Hang in there man.
January 9th, 2018 at 1:36 PM ^
Ace, it takes an absolute ton of courage to share details like that. I commend you for having the confidence to do so.
Here's hoping that this episode is short-lived and that the recovery that follows is long lasting.
Hang in there, and know that the MGoCommunity is pulling for you.
January 9th, 2018 at 1:36 PM ^
feel better, ace. i have a poorly-understood chronic condition as well. i also had to run around to find the right doctor. your condition sounds much less manageable than mine, but i know the feeling. there's someone out there working on something that will help you. just remember that.
January 9th, 2018 at 1:37 PM ^
...and best wishes for better days.
i don't know what you're going through.
what i DO know is that someone, somewhere, is going to read this, realize that they're not alone in their experience, and feel just a bit more hopeful. so, again, thank you.
January 9th, 2018 at 1:38 PM ^
I'm sorry you have to go through this, Ace.
I hope your trip to Alabama goes well and that your potential treatment options are as effective as possible.
Best of luck!
January 9th, 2018 at 1:38 PM ^
I'll put myself out there because there is comfort in knowing we are not alone.
I went from being as healthy as anyone could ever hope for until age 38 at which point I embarked on a ten year nightmare associated with misdiagnosed hypoglycemia. Erratic blood sugar levels would trigger random adrenaline surges at any moment, equivalent to massive panic attacks that very much felt like heart attacks. Doctors misdiagnosed it as anxiety and put me on all kinds of crazy meds, none of which really worked. I suffered probably a good 150 "attacks" over the years.
As a result, for ten years I genuinely felt like I lived with a monster that would show up randomly and inexplicably to drop me to my knees in a massive panic attack where I genuinely thought death was imminent. Multiple hospital trips, multiple embarrassments at gyms, restaurants and work. Caused me to leave a job I wish I'd never left, because I thought perhaps the job was part of the "anxiety" problem. That company went on to IPO in 2011 for near $2B and leaving cost me 7 figures worth of options.
It took a guy one year ago at a Vitamin Shop who asked me questions as to why I was buying certain supplements to peg my disorder as hypoglycemia related. Doctors later confirmed. The monster has not returned since now that I monitor my blood sugar more closely, so hopefully this is mostly in my past, but a lot the damage is mostly done, aside from the financial hardship.
- I'm addicted to certain anti-anxiety meds now that I never really needed, and I'm having a hard time weaning off.
- Since so many of my "episodes" occurred while driving, where I'd frequently have to pull over on the side of a highway and get out of my car so others might see me if I fell over of a heart attack, I can no longer drive on highways at all. As soon as I enter the on ramp, a PTSD related, massive seizure ensues. My brain appears just hard-coded now. I tried shrinks but exposure therapy is hard while driving on highways. Oddly, I have no episode at all if someone else is driving, just if I am behind the wheel. Let's just say I can't wait for autonomous cars to go mainstream.
- I can't consider employment that requires any form of highway travel. I am OK on side roads, but just not highways. Dreams of roadtrips are now long gone unless I don't drive.
- Rigorous exercise is a challenge now due to PTSD.
- I've gained 25 pounds overeating now to overcompensate on blood sugar and am having a hard time figuring out a new diet.
In the big picture I know my issues pale on the spectrum relative to others, including those you face Ace. But do know your story hits home. The guilt I feel at the concern of family members, needing my wife to drive me around on highways, etc., etc.
All we can do is keep trying, keep hope alive, and give thanks for the gifts and faculties we do have and for the loved ones around us. Thanks for sharing Ace. Keep us updated we are all with you.
January 9th, 2018 at 1:43 PM ^
I'm glad to hear you've found some answers and wish you well with your ongoing challenges.
January 9th, 2018 at 8:04 PM ^
January 9th, 2018 at 1:39 PM ^
Thank you for sharing your story Ace, and for using your gift with words to help us try to comprehend even a small fraction of what you go through.
I have a sister and a sister-in-law who suffer from different chronic auto-immune diseases (pain/fatigue/weakness challenges); like you, neither knows whether the good days will last, when the bad days will come or what the next pain-filled surprise may be. Reading your account helps me understand them as well - so your willingness to be open is not just a gift to the others that suffer but to their loved ones too.
I am sure there are days when you loathe the idea of talking about how you feel, and days when you're "sick and tired of being sick and tired", ideas they each express from time to time. Remember what we and all your loved ones know: you are much more than this illness that plagues you, even if - and perhaps especially when - it feels all consuming.
Sending prayers and healing thoughts your way now, on your journey in two weeks, and beyond.
January 9th, 2018 at 1:41 PM ^
It's difficult to bring good out of bad, and the fact that you're even attempting to do so is something we can all appreciate man. I think it's awesome you have people that love you and are helping you get through this as well, in a world where ugliness usually gets the attention it's easy to forget people can be great sometimes.
Hope you get better, we're all pulling for you.
January 9th, 2018 at 1:42 PM ^
The terms "Michigan Man" and "The Michigan Difference" often emit the hollowest of rings.
I heard them blaring like a thousand olde-timey klaxons from your post.
All the best for a speedy recovery or at least return to a cope-able level of health.
January 9th, 2018 at 1:43 PM ^
January 9th, 2018 at 1:45 PM ^
Best of luck in Alabama, here's hoping this is the one!
January 9th, 2018 at 1:48 PM ^
January 9th, 2018 at 1:48 PM ^
So sorry to hear the latest. I just successfully finished a battle with cancer and my suggestion is to keep your loved ones close to you. They can be a tremendouis help along with proper medical care. Stay strong and as my dad used to say, it will all work out.
January 9th, 2018 at 1:50 PM ^
You writing this is important work. It will help some living in pain or depression know that they are not alone. It will help others not going through it understand how common it is for people to suffer debilitating conditions, which will help move our culture towards both providing a more supportive environment as well as understanding the importance of research.
January 9th, 2018 at 1:52 PM ^
Thank you for sharing, Ace. It's not easy to be so open about our personal struggles, be they health, mental, or spiritual. I'm a praying person and will include you when I do.
“Remember, Hope is a good thing, maybe the best of things, and no good thing ever dies.”
January 9th, 2018 at 1:50 PM ^
Just awful Ace, I pray the Alabama trip gets you on the right path ASAP!
January 9th, 2018 at 1:51 PM ^
the maggot in the chip-bag is an effective image of squalor a/o despair
best of luck w/the AL dr - hopefully your visit and ensuing treatment greatly exceeds your wildest expectations
January 9th, 2018 at 1:51 PM ^
I'm totally in awe of the strength and perseverance that you have shown in both battling CFS and in working to ensure that you get your story out there in the hopes/knowledge that it may benefit others who struggle with the same or another illness.
Please know, as has been mentioned above, that you are absolutely in the thoughts/prayers/mediation of all of us in the mgoblog community. I wish you the very best!
Sincerely,
ross
January 9th, 2018 at 1:51 PM ^
Keep fighting, man. Aways forward. I know there are some things you have to go through alone, but you need to know that where we can stand with you, we're with you. I guess we must all seem like strangers to you — but rest assured, to us, you're like family.
January 9th, 2018 at 1:51 PM ^
January 9th, 2018 at 1:55 PM ^
January 9th, 2018 at 1:55 PM ^
I hope you can feel better as much as possible. My mother dealt with CFS for years when I was a young boy (and spent weeks at a time in the hospital with an endless train of doctors/specialists trying to figure out what was wrong). Eventually it just kind of went away for her, but it did take many many years. I also deal with a few various, albeit less severe, chronic illnesses (of the digestive kind) for which there is no real explanation or "cure", so I can somewhat understand the frustration of bouncing from doctor to doctor, doing constant online research to find something - anything - that will help. I guess I'm lucky to live in Canada where we have universal healthcare. It sounds like, based on your esssay, that cannabis might be helping you a bit, as it has for me. I'm no doctor (or health professional of any kind) and while it certainly is no panacea for health issues, in addition to straight cannabis, I've found that using pure CBD extract helps with some of my issues, and, at very least, it allows me to stay calm, less stressed and generally happier when my symptoms are bad. I know for a fact that it is used by some people with CFS and fibromyalgia. It also has the nice little side benefit of not being psychoactive, so you can use it and still do serious things, like work, drive, etc (when that is something you want). I truly hope you sort this out for your own sake and sanity, but also for us because your writing and podcasting is great! Go Ace! Go Blue!
January 9th, 2018 at 1:57 PM ^
Thanks for sharing that, man. It's more than most will ever do as most of us keep our demons hidden inside.
I'm really in no place to give completely unsolicited advice as I haven't had to endure a fraction of what you have, but I can honestly say one thing - the connection between the mind and the body is still not fully understood. And not to go 100% Tony Robbins on you but the power of positive thinking, the connection between the mental and physiological state is more important than it's currently documented, IMHO. Stay positive. You WILL beat it.
One of my favorite t-shirts/images is below. I hope you can adopt this strategy in tackling your illness. Never, give up - give it hell.
January 9th, 2018 at 1:55 PM ^
I admire your dedication and attitude to find treatment that works.
Keep going and I am grateful for all your work over the years. MGoBlog is better with your voice.
Thank you and good luck
January 9th, 2018 at 1:57 PM ^
Everyday your writing here makes us feel better, and hopefully knowing that helps you while you're feeling down. Thanks for sharing and it's remarkable that you can feel the way you describe and still put together a compelling article. You rock Ace!
January 9th, 2018 at 1:59 PM ^
Ace, we all appreciate the hard work and now that we know exactly what it takes, we appreciate it all the more.
As someone with Bipolar Disorder, I'm struck by how similar the emotional experience of CFS is. Maybe it comes down to the inescapable feeling of being "less than." But no matter how much sense they seem to make in the moment, depressive thoughts are never logical.
Something I try and remind myself of is the fact that when people care about you, you can't ever be a burden on them.
Go Blue, buddy!
January 9th, 2018 at 2:03 PM ^
Amazing writing Ace. I hope you feel better soon and find the answers that you are looking for.
January 9th, 2018 at 2:04 PM ^
January 9th, 2018 at 2:06 PM ^
I wish I could reply to every one of you individually. The response to this has been overwhelming, touching, and uplifting. I'm incredibly fortunate to be a part of this community.
Purdue preview at 4 pm.
January 9th, 2018 at 2:07 PM ^
In this age of progressive atheism this isnt politically correct to say but you are in my prayers Ace. God Bless.
January 9th, 2018 at 2:27 PM ^
Practicing your faith, whatever it may be, is an gosh darn American Right. It is not and should never be politically incorrect to do so, wish blessings, send thoughts and prayers.
What is wrong is pretending thoughts and prayers are good enough when lawful action can be taken alongside thoughts/prayers.
January 9th, 2018 at 2:08 PM ^
Hope u get better big Acerino
January 9th, 2018 at 2:12 PM ^
Good luck Ace.
January 9th, 2018 at 2:20 PM ^
Keep on keeping on. Really appreciate your post and glad you are willing to share. Fingers crossed that good things come from your trip to Alabama.
January 9th, 2018 at 2:21 PM ^
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