Dispatch From A Frigid Basement On Monday Afternoon, I'm Pretty Sure Comment Count

Ace January 9th, 2018 at 11:58 AM


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]

Comments

boliver46

January 9th, 2018 at 1:39 PM ^

Ace - I am pretty sure my wife has CFS as well.

She can sleep 14 hours no problem - and wake up needing a nap...and unable to do more than get dressed.  Pain, numbness, and weakness persist as well when it is at its worst.

They are torn between Fibromyalgia and Lupus - and she is a guinea pig to them to try out the latest and greatest (that ultimately fail).

I will need to do research on this and find out who can properly diagnose her.

I may reach out to you if that is ok?

Clarence Beeks

January 11th, 2018 at 7:47 PM ^

I have/had it, too, and the solution set was a combo of endocrinology (low thyroid) and neurological (something in the fibromyalgia ballpark that they haven’t ever been able to completely diagnose). The “magic bullet” to fixing it for me ended up being a medication called Horizant; a medication that we discovered worked completely by chance (I was prescribed it by a different doctor for a completely different reason). It’s magic, seriously. I went from exactly what you and others are describing just 13 months ago to feeling so well that I was able to fully get back into distance running (to the point that I logged over 1,000 miles in 2017). I’m not a doctor, but have researched the hell out of what I have (as we all have), and my understanding is that what happens with these conditions is that your systems are on hyper drive (which makes you ungodly tired, even if you’re not physically active) and the medication works to slow everything down. I still have some bad days every now and then, but here’s how I know it’s working (and everyone with these conditions will get this): I know when I’m having a bad day (whereas before I didn’t even know because they were all bad days). As with these things, it helps to share experiences, so I hope this helps in some way. I feel for you, Ace.

mgobleu

January 9th, 2018 at 2:39 PM ^

I'd love to know what Ace and your wife's early experiences are with their illnesses; I've been bounced around from doctor to doctor and my suspicion is that I might be experiencing early symptoms. I've been fighting head to toe pain and fatigue for a couple years that comes and goes, regardless of sleep, activity, etc.

I do have a degree of sleep apnea and my vitamin D levels are borderline low, so these are surely what is causing my issues, according to everyone I've seen, but I disagree. I don't get drowsy; I actually feel that my sleep is quite restful (i've had a sleep study, but I laid awake the entire night because who the hell can sleep in a strange room with a thousand wires pasted to your head, a cpap that you can't breathe through and a Sauron-esque infrared camera watching you all night), and I've been taking vitamin D for months with no relief.

This however is a deep, transient ache in my bones that is a far, far cry from lack of restful sleep. I've told my doctor that we need to pursue this, but he seems uninterested; probably because the only roads ahead are ones that are difficult to diagnose and have no concrete treatment options.

Anyway, sorry if this isn't the place to lay all this out, but part of me fears I'm travelling in your direction as well. Good luck...

boliver46

January 9th, 2018 at 5:09 PM ^

wife began with simple tiredness.

She'd be exhausted after a long day of not doing much at all - feeling like she'd run a marathon. Physically drained AND with accompanying leg pain making her feel every mile of that virtual marathon.

She basically began to live her life like people who have MS or other autoimmune diseases do...the theory of the spoons.

Say you start every day with 10 spoons - basically representing your energy and ability to do stuff that day.

But every thing you do - getting out of bed, getting dressed, eating...all takes away at LEAST one spoon - many taking more than one.

What happens if you run out of spoons?  Extreme pain, tiredness...feeling of overexertion - when really you didn't do much in the grand scheme of things.

And as time has gone on, she has less and less "spoons" available to her at the start of each day. :(

I know this is a vague and subjective description of her condition - but it is the only sort of anecdote to describe what is happening.

Best of luck to you.

mgobleu

January 9th, 2018 at 10:47 PM ^

It's vague but it makes sense. Hope you take care of her well; sounds so frustrating.

I guess I'm fortunate that my rough patches are spelled by some relatively long periods of relief. I had a pretty rough 5-ish months this year but the past 6-7 weeks have been pretty good, even close to 100%. Last episode was pretty much the same, except over the winter instead of the summer.

Ah well. We'll wait for the next round and do the doctor office dance again when it hits.

God bless you and your wife.

ME_level_achiever

January 15th, 2018 at 10:56 AM ^

Boliver, I am very glad that Ace is consulting with you about your wife's health. I have ME/CFS and have mostly had it at a heavy-moderate to moderate level, but not severe.

With your understanding of the spoon theory, you sound like you are trying to learn and be there for your partner. That's all good.

Do watch the 2017 movie Unrest. For the next few days it is streaming FREE from your PBS TV station. As Ace said, the director, Jen Brea, largely created it from bed. Currently, it is on the 15-documentary shortlist for Oscar consideration. It's that good. (PBS TV schedule might list it as INDEPENDENT LENS, their series of independent films). Brea may have a worse case than your wife, with more sound and light sensitivity, for instance.

There is hope. Ace's dad is one extreme example. I am currently doing better than past years due  to diet, medication, and pacing myself. Everyone's condition has some core similarities, but also can vary in some ways. Many people with ME/CFS at a moderate level have deep muscle aches for days after a light activity. The illness affects cellular metabolism and a number of body systems.

I still have ME/CFS, but at a lightly moderate level. I was worse---pretty much where your wife is now. My legs used to feel leaden just from walking up a flight of stairs (or much less). Also, muscles feeling more sore (all over) for about 3 days or more after light exertion versus one day or no days when healthy. Difficult to concentrate. Watching TV was too stimulating after a little while. I felt guilty a lot for not helping my spouse enough with daily stuff and for not doing as many activities with my kids as I wanted to. I did not have the extreme sound sensitivity or light sensitivity that some patients have.

Do watch the very well made documentary Unrest. For the next week, it is streaming free on PBS TV. Everyone should watch it for awareness. People in med school should watch it twice.

Do go to go to healthrising.org (not .com) for more info. It has great articles and a forum for patients and caregivers. Maybe you or your wife already have been there.There are a few other great organizations regarding this illness. 

There is so much information to convey. Again, I am glad Ace is consulting with you. If you and your wife want to reach out to me, feel free. I don't know how to provide a text or email link tho.

Good luck to you both from Grand Rapids! And good luck to Ace of course!

UMgradMSUdad

January 10th, 2018 at 9:09 AM ^

I declined to do a sleep test several years ago for many of the reasons you listed above.  A year ago, though, I did have one that was much less intursive and expensive.  It as just a mask and two wires to the forehead that I wore at home, then brough the unit back the next day and a few days later had my results.  I now use a cpap and sleep much better..

ME_level_achiever

January 15th, 2018 at 10:57 AM ^

Sorry to hear that, mgobleu. I have ME/CFS. If you have muscle stamina and muscle ache issues after fairly light activity for 2 or more days (during weeks when you are symptomatic), then you might have ME/CFS. Otherwise, maybe fibro? I don't know that much about fibromyalgia because I don't have it. I would need more information to form a personal opinion of whether you might have this illness. The website healthrising.org is very helpful for a better understanding and keeping up with news. There are a few great ME/CFS organizations like the one Ace is raising money for.

When I started getting it, I would have some weeks on and some off. Keep getting educated on this illness to determine if you have it.

I won't repeat some of the information I put in a long response to mgobleu. Please read my response to him for a little more info. Good luck.

+++++++++++++++++++++++++++++++++++++++

Robbie Moore

January 9th, 2018 at 2:50 PM ^

My mother most likely had it before anyone knew what it was. Eventually the conclusion of the medical field was that it was psychological. She tried like hell to lead a normal life but it was heartbreaking then and heartbreaking now in retrospect. If there is any kind of silver lining, Ace, it is that now we understand it really is a thing (and not psychosomatic) and maybe there are things medicine can do to alleviate or cure. Best of luck in Alabama. Please keep us in the loop. There are so many people who know you and care about you.

schreibee

January 9th, 2018 at 5:02 PM ^

I have a very similar circumstance with my wife. She suffers from some or all of those things (possibly, Lupus is difficult to accurately diagnose). She also has something very little known or understood, Sweet's Symdrome.

It sucks - for EVERYONE!

She's such a great Mom our son is only mildly cognizant of it. Sometimes Mom just needs to rest - all day! But she's always there for him.

Ace, those of us familiar with the devastating effects of auto-immune disease know what you're dealing with. But opening up like this can really help others get an idea.

So thanks! And truly hope they figure out a way to help you!

ME_level_achiever

January 15th, 2018 at 10:53 AM ^

Sounds like you are supporting your wife like my wife is there for me with my chronic illness. That's awesome.

Try to watch the 2017 movie Unrest. I forgot to mention in a response to mgobleu that it could be listed as 'Independent Lens.' That's the PBS series of independent films that Unrest is showing under. Streaming is free for almost another week.

Best wishes to you guys.

Bambi

January 9th, 2018 at 12:05 PM ^

Fuck man. I don't know what else to say. I'm sure I can speak for this userbase when I say we'll be thinking of you and are here for support

Gobgoblue

January 9th, 2018 at 12:07 PM ^

for sharing your story with us.  It is empowering and you give me hope.  And as surprised as I am to learn that they have science down in Alabama, I wish a speedy recovery after your visit.

Take care and I'll be thinking of you.

Candor for Sale

January 9th, 2018 at 12:10 PM ^

Thank you for being so honest about this, Ace. I admittedly knew little to nothing about CFS, but am glad you are creating this awareness. We're here for you, even if we can't be "there" for you. All the best vibes, man.

Heptarch

January 9th, 2018 at 12:11 PM ^

My fiancee has Hashimoto's disease (and likely a host of other related undiagnosed autoimmune issues). I am lucky enough not to suffer from such things, but I have seen the cycle of hope and despair you're taking about.

As you said, you hope because you must. Don't stop. Sooner or later Western medicine will figure out what the hell is going on in your body and find a way to help you.

RedRum

January 9th, 2018 at 12:13 PM ^

It was brave to share you story. You don't need my or anyone elses alcolades, but you are doing the right thing. I hope others benefit from your story. 

God Bless and Go Blue!

Zeke21

January 9th, 2018 at 12:15 PM ^

Get out to Zuma beach in so cal.

Wash off in the pacific.

All your worries will go away.

As well as your chills.   

Love your work. Go Blue.

Peace.

ST3

January 9th, 2018 at 4:06 PM ^

I would recommend visiting SoCal for the sun, but we've been without that for a few days. Sunlight can work wonders for one's mood, but this sounds like a much larger problem. My cousin had fibromyalgia and posted about it just about every day on facebook. Then, she found something that worked for her and hasn't posted about fibromyalgia in several months. I hope a cure/answer is in your future. Best of luck, Ace.

P.S. Is Ken your father? That's some really interesting work accompanying your post.

Jonesy

January 10th, 2018 at 5:56 PM ^

Was there some post deleted that this was a response to?  I grew up in LA, I live there now, the water in the beaches here come from the north and are always frigid, not like the east coast where the water comes from the south. Zuma was my favorite beach as a kid because it had nice waves and lots of sand crabs to dig up.

ST3

January 11th, 2018 at 11:48 AM ^

If by freezing you meant cold, then I stand corrected. It's full-body wetsuit season for the surfers. But they should be staying out of the water now because of all the rain runoff. That's another "season" that XM should mention about LA - "fecal bacteria in the ocean season." Message to recruits - avoid UCLA at all costs because of "fecal bacteria in the ocean season."

Chunks the Hobo

January 9th, 2018 at 12:17 PM ^

Hope the worst passes soon and you feel better again, Ace. It has to be tough to have to battle so hard every day just to achieve what so many of us take for granted in our lives. Cheers.

DualThreat

January 9th, 2018 at 12:18 PM ^

If your doc is by chance in the Huntsville/Madison area (here in AL), you have a place to stay with a fellow Michigan fan/alum.  We have 2 spare rooms in our house if you and/or your dad need to spend the night.

Although we'll be out of town 1/19 - 1/27.  Any time outside of this range, though, our house is yours.

Tim in Huntsville

January 9th, 2018 at 3:06 PM ^

I, too, am in the Huntsville area and can help provide a support network.  There are a lot of us Wolverines here to help.

I have been lucky health-wise, but I have a couple of stories in my immediate family.  My wife, a Type 1 diabetic who believed she had CFS at one point, had a spinal fusion, followed by a near-fatal Diabetic Ketoacidosis incident and, year later, a bout with Skull-based Osteomyelitis.  The Osteomyelitis caused her a tremendous amount of pain and was originally thought to be a tumor.  The good news is that, after her fifth different ENT doctor, at the University of Alabama-Birmingham made the proper diagnosis on the first visit and prescribed treatment that cleared up the problem.  UAB has extremely talented medical people.  UAB is also affiliated with the Huntsville Hospital System, so if you come here to Huntsville, you will get the same top-notch care.

Ace, your story is very similar to my second "immediate family" story.  My step-son, also a Type 1 diabetic, was at Michigan for his senior year majoring in Philosophy, Greek, and Latin with the goal of being a Philosophy Professor.  He fell into a major depression and didn't leave his room in his off-campus housing for several weeks.  As he was quite independent and didn't really check in much with us, it didn't concern us until he didn't respond to several calls; police were sent to the house and found him alive but quite ill.  Needless to say, we brought him home and he was diagnosed with obsessive perfectionism.  He stopped going to class because, though he had a 4.0 going in his final semester, he felt as though he wasn't doing good enough work for his professors.  He was treated and is better now, though he did not return to complete his degree.  He now works for me as a software developer (and he is really good at that)..

In summary, I hope you find relief in Alabama.  I am sure I speak for the entire Alabama Michigan family in saying, "We are here if you need us."

Tim

Kevin Holtsberry

January 9th, 2018 at 12:19 PM ^

As others have noted, I can't even imagine wrestling with these issues.  I really apprecaite all that you contribute to the site.  I hope and pray you get things figured out, to the degree possible, and get back on a more positive track.  Remember that you have a lot of people pulling for you.

BK-bloo

January 9th, 2018 at 12:23 PM ^

It's a brave thing you're doing here; and bravo for recognizing it's bigger than any one individual. Good luck, and we look forward to your vigoruous return to these pages.

VaBeach Wolverine

January 9th, 2018 at 12:23 PM ^

Pain doc here.

Ace, if the doc in Alabama is of no help then I recommend you look into getting IV ketamine. May be of possible benefit. Hopefully that doc in Alabama can get you in the right direction though.

VaBeach Wolverine

January 9th, 2018 at 5:00 PM ^

Lot of overlap with fibro and CFS. Ketamine is an emerging treatment for both, lot of ongoing current research and has been in the news a lot recently. Often times in those diseases, NMDA receptors are hyperactive. There is also evidence of microglial imflammtion on fMRI, Ketamine can help with that as well. Not saying ketamine is a wonder magic drug to cure the CFS, but its more promising than anything else out there and if I were already locked into bed I would give it a try.