(1) I finally met the physician I’d been referred to last October, and now I know why there was a seven-month wait on appointments. The guy is both competent and humane (like Tod Worner, but a different guy). I like that in a doctor.
(2) I’d been planning to tell him everything’s fine now, but actually it’s not fine. I’ve had a wind-up of fatigue and the same kind of pain I was having last fall — it was still fairly mild on Thursday, but is getting more rather than less intense.
The purpose of this post is to try to find out if anyone else has experienced the thing I’m getting. The rheumatologist has never heard of it, and he’s pretty experienced in his field, and he is also familiar with the types of pain associated with disorders outside his field. The internet isn’t giving up much so far, either. But rare disorders exist, and so conceivably there are people in the world who either get this thing or have seen it in their practice.
If you are that person, my e-mail is below, scroll down to the bottom.
If you are not that person, help yourself to the blog discussion group for the purpose of general commiserating or talking about the thing you get that isn’t like my thing but you still want to talk about it. Please do not e-mail me with those well-meant comments, because I am notoriously bad at keeping up with my e-mail as it is.
Do please share this post around, though. There are sharing buttons below to make that easy for you.
(Please assure helpful strangers that I’m not interested in talking about religion or politics with them. My rheumatologist isn’t really into that. This is strictly a medical-bleg.)
The syndrome we’re talking about is this:
(a) Muscle pain. Not joints, not skin, not your stomach or your sinuses, none of that. Feels like it’s muscles.
(b) Aching predominates, some burning, and the odd needle-like stab.
(c) Affects muscles that have been recently exercised (in the past day or two). So usually legs, since I’m a person who walks, but if I did an abdominal workout it’ll be abs as well, if I did a lot of upper body stuff it could be arms or shoulders, etc etc. It is utterly unlike normal post-exercise muscle soreness. Do not make me lecture you on how experienced I am with the normal stuff. It is not that. Not. at. all.
(d) The pain only comes on when the muscle is at rest. (I get some calf pain with use, but let’s ignore that since it’s distracting. I want to focus on the more perplexing stuff.) By “at rest” I mean when the muscle is relaxed, for example if you’re sitting down your legs might be relaxed even if your upper body is engaged in some activity. So it’s particularly noticeable when laying down during the day for some reason, or when going to bed, but it certainly does not require the whole body to be relaxed. Time of day is irrelevant. The key factor is that the muscle that starts hurting is not presently doing any work.
(e) The pain is temporarily relieved by movement, stretching, or pressure, but returns as soon as the muscle is again completely at rest.
(So if I’m sitting and my leg starts to hurt, I can fidget and the pain goes away. As soon as I forget to fidget, it’ll come back. Unfortunately, one cannot fidget oneself to sleep.)
This presentation is extremely consistent. It started intermittently about a year ago, became significantly problematic last fall, had largely gone away for six months, and has returned in exactly the same form as previously. This consistency is why I’m persuaded it’s a physiological problem that surely other people have experienced.
Some additional notes that may or may not be helpful:
(f) There is no correlation with mental state. Thinking or not thinking about it has no bearing on whether the pain shows up; being anxious or relaxed or distracted or you-name-it is irrelevant.
No relationship to menstrual cycle either. I haven’t detected any other certain associations, other than fatigue and exercise. (This prospect does not really keep me from exercising, because don’t be stupid, you need to exercise. But the sleep-deprivation? Yes, that will slow me down a lot.)
(g) Mine does respond to ibuprofen pretty well most of the time. (I try to avoid taking it habitually though; I only use it if I’m really desperate for sleep.)
(h) For those who are curious, yes my dysautonomia symptoms are ramping back up as well. So there does seem to be a strong correlation between when I’m feeling all that stuff and the pain-thing.
(i) In addition to the muscle pain, I also get random fasciculations along the same pattern, but they are not as prevalent. The muscle that is twitching is not a muscle that is hurting. (Probably because this particular thing involves muscles not hurting if they’re being used?)
(j) My diet is great and I take all the things and do all the things and present as a very healthy person. I have a happy and enjoyable life, including a loving family and many good friends.
For those of you who don’t know me personally, I pretty much live in the present. When something’s not bothering me, I promptly forget about it and move on and think everything’s fine now. Therefore I’m always a bit surprised and mildly insulted when symptoms come back later. (I thought you were gone. What are you doing here? Can’t you see I’m busy?)
Anyhow: If the description in (a) through (e) rings a bell with you, please e-mail me.
I can be reached at: currentresident [at] fitzes [dotcom].
Put something really obvious in the subject line such as answer to your bleg on “name that pain”, or I’ll accidentally delete you as spam. I get a lot of spam, so if your subject line is “hi” or “help” or “about your blog post” or “hot Russian singles want to sell you cheap Canadian Viagra” you’ll be cast into the outer darkness.
Monday evening SuperHusband walks in the door and he’s got a business call, important. The children know what that means. Time for quiet in the house.
They are finishing up the evening clean-up, but thoughtfully withdraw from the kitchen so their dear father won’t be disturbed by the clatter of dishes being washed. Two children, surveying the mess in their bedroom, decide the old sheets of bubble wrap need to be tossed. Immediately. Which means bubbles need to be popped, immediately.
Well aware their father is on the phone, they cross the hall to the bathroom, shut the door, and start jumping on those bubbles.
Children never cleaned so vigorously.
I knock and open and thank them for their consideration, but explain that one mustn’t pop bubble wrap at all while someone is taking an important phone call just meters away.
And that summarizes the State of Lent, Days 10-15. FYI the reason for the radio silence here was not a fit of holiness but a significant computer problem which required the services of Senior IT Guy, who was out of town. Seems to be fixed now and we are back on track. Perhaps Lent is likewise. We’ll see.
So the reason I vanished from the internet like I’d been kidnapped in broad daylight is that I had to quick plan a massive trip to Europe. (I know!) A different day, I will write more about the how-to’s of pulling off that feat; for now just know that yes, it consumed my every free minute from the moment the opportunity opened up until the transport, lodging, and insurance were firmly established.
You understand, because you, too, have something you want to do that, if you were suddenly given the chance, you’d drop everything and make it happen. I want to talk about what it takes to make that thing happen for you.
The One Big Thing
I think “bucket lists” are nonsense. Life isn’t like that. My list of priorities looks like this:
My vocation as a wife and mother.
#1 and #2 are inseparably intertwined — doing one means doing the other, always. #3 is composed of all the other things that might be important, but that when push comes to shove you can pout all you want, I’m not available to do that thing you think I should be doing, if it interferes with #1 and #2.
Still, there’s a pile of good stuff behind door #3, including a long list of, “It would sure be nice if . . .” items. It would sure be nice to have a bigger, prettier house. It would sure be nice to visit New England. It would sure be nice to take the kids to Mount Vernon (God-willing, that’s next summer). The One Big Thing also sits behind door #3, but in a different corner of the Everything Else room.
We have a friend whose One Big Thing was to invest in a large, well-appointed home for his eventual wife and children. It was so important to him that he started saving up for that house while he was still in college. It’s not that he would have felt like he’d failed in life, or “missed out,” or that his happiness depended on having that house. It was just important enough to him that he was willing to sacrifice a lot of other good things in order to make it happen if he could. (And he did.)
You have some things like that. Things that maybe are achievable or maybe they aren’t, but if you do get the chance, you’d be willing to set aside a lot of other good stuff in order to make your One Big Thing happen.
The Things We Set Aside
So I’ve been thinking about taking my kids on this trip since I was sixteen years old.
(Yes, that’s right: I wasn’t dating anybody, I hadn’t yet met the man I’d eventually marry, it would be another decade before the first child was even born. I was sixteen years old and walking along a misty tree-lined alley leading up to a historic French chateau, and I knew that one day I wanted to share that moment’s experience with my future children.)
Everybody has a different financial picture, so this isn’t a talk about how if you just do what I do you can have your big thing. But I want to make it clear that there’s a long list of good, worthwhile things we’re forgoing to make the One Big Thing happen. On that list:
All superfluous purchases. I was going to bring home flowers for Valentine’s day, but I need that $2.99 to be in the bank this summer.
A laptop that works. My trusty Surface Pro has given it up, and thus one of the reasons I don’t write as much lately is that I don’t have a computer I can take to another room when the family’s all home, and I do have to jockey for time on the shared machines. So basically I’ve made the decision that something I really love, writing, is just not going to happen as much as I’d like, for a while.
A new-used car. Our minivan has 170,000 miles on it. The doors either don’t lock or don’t open or sometimes both. The paint job is Green and Black Cheetah because we’ve filled in with primer where the original finish is rusting out. There is no interior carpet anymore, just bare metal with strategically-placed rubber mats. We’d been planning to upgrade to something conceived this millennium, but my mechanical engineer tells me we can get that baby to 200K, no problem. So that’s what we’ll be doing.
Living room furniture. When we updated the circa-1985 paint in the living room and hallways this Christmas, we donated our couch and recliner, from the same era and in the same general condition, to other worthy recipients. What’s there instead? Lawn chairs. Really nice ones, yes: They’re the ones we got from Lowe’s on clearance and had previously been using to kit the screen porch. They just got promoted to a full-time, permanent gig as Chief Living Room Furniture.
More house space. Eventually that minivan is going to need to be replaced. Good thing we just painted, because this family of six is going to be squeezed into the three-bedroom ranch for a long time to come.
I mention that last one not because it’s a big deal (I know larger families living in smaller houses), but because to a lot of people, a spacious home is their One Big Thing.
You just have to know yourself and know what trade-offs fit the kind of person you are. No matter how rich you are, you can’t have everything you’re able to want. We all have to prioritize, and give up some good things in order to have other good things that are more important to us.
Seizing the Day
I’m not omnipotent nor omniscient, and neither are you. There’s no telling what will happen between now and the end of June. Perhaps our plans all come to naught. One of the ways you know you’ve hit your One Big Thing is because you can honestly say to yourself: Even if this doesn’t work out, I have to try it, because I will always regret not having taken my chance when it came.
[Tip: If you are making a significant financial investment in anything, get that investment insured. You can insure a house, a car, a boat, a musical instrument, and yes, even a trip.]
In our case, what happened is that we were thinking about taking a much more reasonable, but still-ambitious, stateside family trip. That was another thing we’ve always wanted to do and here we were: The kids were at the ideal age, my health was finally decent again, there was a slot when we could take the time off and make it happen.
So we talked about a variety of other, much more sane choices. Then one day I came to my senses. I told my husband: I would rather not go anywhere this summer, and save up for as long as it takes to make my One Big Thing happen.
And he briefly set aside all reason and scruples and determined that he really, really loves me, and that maybe we should talk about this. I pointed out that I’ve been talking about doing this trip since as long as he’s known me, and also there has not been a single time in the past decade when I was physically able to make it happen. Our son graduates high school next year. If I wanted to do it, now was literally the only time.
So I did it. Trip is booked.
This is where we’re going. Photo by Fr_Antunes (Flickr) [CC BY 2.0], via Wikimedia Commons. And no I won’t be live-blogging it, because: I don’t have a working laptop. That’s fine. My One Big Thing wasn’t “taking the internet on this trip,” it was, “taking my kids on this trip.” I don’t recall ever giving birth to a computer, thanks.
I’d never even heard of the Legion of Mary. But this lady was fast. She had my name on those forms in an instant. There’s the x for your signature, here’s a copy of your prayers to say every day, and don’t worry, it’s not a mortal sin if you miss a day, but do keep up with it.
“But I don’t go to this parish,” I told her.
They weren’t picky.
I signed. And then I had to go home and explain this to my poor husband, a protestant who believed in neither the Blessed Sacrament nor prayers to Mary. Oops. Luckily he recognized the swift hand of God in answering my prayers for a better prayer life, and if it made no sense to him personally, who was he to argue with God?
And who am I to argue either?
That was all great until, as I wrote in 2015, things began to get complicated. It is difficult to pray the Rosary (or any other talking-prayer) when you get light-headed when you talk. The hagiographers won’t have any work to do with me, because I’m not one of those saints with heroic perseverance. After a long period of trial and error I finally decided to sub out the Office of Readings if I couldn’t reasonably pray the Rosary, since that’s far easier to pray along with silently. It’s reading. They put the word reading right there in the name of it.
(I thought about making myself a rosary to read. Like a slide show or something. But then I didn’t. I guess I should do that. And yes, I tried apps and things, but nothing suited.)
So then, as I wrote the other day, I got better again! Woohoo! Which means that I transitioned, slightly unaware, from World’s Worst Auxillary Member of the Legion, But She Has an Excuse to WWAML, No Excuse. I had forgot I could do this thing again.
But you know what? God didn’t forget, and neither did this other guy.
Enter Rosary, Stage Left; Saint, Stage Right
Two big things happened in the last weeks of December. I can’t remember which happened first. One was that in the course of cleaning out the house, I came across the stunningly beautiful rosary that a friend had given me as a gift some years ago. I used to pull it out for the Easter and Christmas seasons, but I’ve been slack about keeping up with liturgically-timed theme-changes lately, and honestly I had sort of, I’m mortified to admit this, forgotten it. But it pushed its way in front of my nose before Christmas, you betcha.
Then I forgot it again, because it was still Advent. I know! But it gets worse!
Meanwhile, my boss here at the Conspiracy posts that she got St. Andrew for her 2017 saint. He’s well-used among Conspirators, but still in good shape. So naturally I had to go compulsively find out who my 2017 saint would be, even though it was still firmly 2016, but you know, Facebook. Must click the link.
So I go, and I pray briefly, hit the button, get to the screen which tells you to pray, and I pray again. A Hail Mary this time. Hit the second button:
If you are in the Legion of Mary, you are now laughing manically and thinking about wiping up the coffee you just spewed all over your screen. Sorry about that, maybe you should read the blogs of more reputable members.
The Case of the Unblessed Rosary
So I was officially put on notice. No shirking in 2017, not for me.
Meanwhile, I again discovered that gorgeous rosary I’d re-forgotten, but had cleverly put on a shelf where I’d stumble across it more reliably. The second time, I remembered something else: I’d never gone and gotten that rosary blessed.
There are two reasons for its heretofore unblessed state:
(1) My friend who gave it to me is not a Catholic, she’s just an extremely thoughtful and generous person who had this beautiful thing she knew I’d treasure made for me.
(2) At the time I received it, I had no idea rosary-blessing was even a thing. No one tells you anything when you’re Catholic. You can go years and years not knowing all kinds of stuff “everyone knows.” Problem I might rant about another day, but for now, on to the happy ending.
So I’ve got St. Louis M. breathing down my back, a forlorn rosary dying to be put to its proper use, and hey, the year begins with the feast of Mary, Mother of God.
So yes, even though Father was miserable with a cold today at Mass and it pained me to ask him to say one more thing with that throat of his, I totally hauled that rosary out and had it blessed. And then I went home and used it. 1 down, 364 to go.
If you read this blog via e-mail or feed reader, or if you have Ad Block ensabled on your browser, FYI: Among our sponsors here at the Catholic Conspiracy are people who make and sell rosaries. If you’re in the market for Catholic or Christian-friendly goods and services, do kindly see if any of our sponsors are offering what you’d hoped to find. Thanks!
This is a post that sounds like satire but is not. This is a post about cold, hard, liturgical reality: The best Catholics are the slackers.
That’s right friends. You agonize every year about whether you’re doing Advent, or Christmas, or Lent, or Easter just right, and you have the pictures on Pinterest to prove it. Dear, dear one, lose your life and you’ll find it. The best way to be liturgically on the ball is to drag through life barely holding your head above water.
Here are five proofs hidden in the couch cushions at the home of that friend who never invites you over because her life is such a trainwreck. Not kidding. This works. Especially #2.
#1 No new music.
New music is for people who have time to learn things. Now mind you, I don’t object to the odd innovator. But nothing says in step with the season like singing last millennium’s music. Or the millennium before that. If it was good enough for Advent 1016, it’s good enough for me.
#2 No gratuitous shopping trips.
Christmas is so commercial! they weep. Not if you don’t have the time, money, or energy to go the store, it’s not. You don’t have to be poor in the spirit, just poor in something that keeps you out of the mall. I’ve tried it both ways. Not shopping is better.
#3 No decorating and entertaining excess.
Yes love, we’ve heard all about how so very tired you are from all the time and energy you spend getting your house (and office, and wardrobe) just so for the holiday season, and how much work it was to put on your fabulous collection of carefully tailored parties (one for clients, one for employees, one for the neighbors, one for the close friends, one for the other friends, one for the friends who can’t be with the other friends . . .). Sweetie pie, if you were really tired? You wouldn’t be doing all that stuff.
You know how tired people entertain? By sleeping. That’s how. It’s very entertaining, try it sometime.
Liturgical tip: Start the season utterly exhausted, and you’ll never, ever have to wonder if you’re losing the “real meaning of Christmas” amid all your busyness.
#4 Your Christmas tree will always go up at exactly the right time.
This is the great thing about trees: They look great anywhere. Your Christmas tree might be sojourning in the forest all winter this year — that’s very contemplative, you know. But imagine for a moment that you mustered the wherewithal to drag a tree, or some inventive product that reminds the casual viewer of a tree, into your home this holiday season.
Some Catholics, under those circumstances, would have to worry: Have I done this too early? Too late? When exactly is the tree supposed to enter the home?
Not you, exhausted slacker friend! If it arrives early, it’s an Advent tree, or else it’s you managing to get something done ahead of a time for a change. If it comes in the 24th, hey, perfect!
But what if, say, you pull it off the neighbor’s curb on the 26th? You’re a shining example of good stewardship, both financial and environmental. Rejoice — you’ve been heralded in a century-and-change of papal encyclicals. Woohoo!
#5 No skimping on the fullness of the season.
What’s the big rush in taking down the Christmas decorations?
Would it really be the feast of the Presentation if there weren’t a few reminders of the Nativity artfully displayed about your home? What about the Annunciation, huh? Are you so spiritually adrift on the tides of the seasons that you’ve never noticed the parallel between the manger and the tomb? It might be easier to catch those connections if you weren’t so keen to whisk away your baby Jesus to His summer home in the attic.
And of course there would have been no Easter if we hadn’t had Christmas first. Leaving out your past-due decorations is like living every day of your life in a dusty, slightly dented, but arguably beatific living Gospel.
While organized, industrious people pack up their holiday spirit in order to bustle onto the next big source of ennui, we slackers bask in the glow of eternity, our living-rooms perpetually witness to timeless truths.
Happy Advent! And other seasons, too, while we’re at it.
It’s Dysautonomia Awareness month, and I’m hereby aware. Dr. Google can tell you all sorts of things, but my favorite link is to Living with Bob, FYI slight language warning (which I don’t approve of), but I like the assortment of information. When you visit Dr. Google and the major advocacy organizations, what you mostly hear about is POTS, to the point that some outfits equate the two. That’s sort of like equating “leg pain” with “broken femur.”
[FYI: You don’t want POTS. Or a broken femur.]
Dysautonomia, aka Autonomic Dysfunction, is when your autonomic nervous system doesn’t work right. That’s the part of your nervous system that does all the things you don’t have to think about and really don’t control. Any underlying illness or injury that affects the nervous system can cause autonomic dysfunction (MS, diabetes, lupus, spinal cord injury, etc.), and there are an assortment of disorders that have autonomic dysfunction as their chief complaint.
Since blogging is all about self-absorption, let’s talk about me.
Complaints, Complaints, Complaints
The most dramatic and pressing element of my dysautonomia is Inappropriate Sinus Tachycardia, which drama longtime readers know all about, check the archives. What happens is that on exertion my heart rate accelerates excessively, which leads to dramatic shortness of breath and an inability to do, well, anything. Conveniently I’m one of the people who responds very, very well to a low-dose beta blocker, so the symptoms are under control.
In everyday terms: One day on vacation last spring I forgot to take the beta blocker. After a leisurely breakfast, about noonish I started getting ready to go out and do something fun. Brushing teeth? HR of 120. In the shower? 140. In contrast, on the beta blocker, 120 would be my heart rate having just jogged up two flights of stairs carrying a full bookbag.
On the vacation story, once I noticed I’d obviously forgotten something, I went and took the beta blocker and was fine to go out and be a normal active person traipsing around the city all afternoon.
One of the things that people will say about these kinds of idiopathic tachycardias is that they must be due to “deconditioning.” When I first started with severe shortness of breath on exertion, I had just gotten home from a trip up north where I’d spent one morning climbing up and down a snowy hill sledding with the kids, no problems. You don’t decondition that quickly. Likewise, once I was diagnosed and treated, I went in the space of an hour (time it takes to make propranolol start working) from unable to walk an 1/8th of a mile slowly to doing laps at the school walking track as quickly and for as long as I liked.
I assure you that if you are so deconditioned that you can’t walk an 1/8th of a mile, the lowest available dose of a beta blocker will not instantly improve your conditioning by a factor of twenty. Dysautonomia is not deconditiong.
Stupid, Annoying, Incurable
Because the tachycardia responds so well to treatment, it’s not a significant problem as long as I’ve got access to the drugs. I would say the most debilitating and limiting symptom I have is that I will, intermittently, get lightheaded when talking.
It’s a sensation a lot like hyperventilation, and the effect is similarly cumulative — you can handle some amount of it, but eventually you have to quit. It’s a fairly common complaint among people who have POTS (which I don’t have, but which is a different tachycardia), and one that there is basically no discussion of in the literature that I can find.
I manage this symptom by daily reconsidering whether maybe I should have been a Carthusian. Just kidding. I’ve never even had chartreuse.
What really happens is that if I’m particularly feeling it, I just avoid talking to people. This is a tad socially awkward. Alternately, I talk to people and secretly resent them for being a person that I’m talking to (tad immature); or I feel guilty for making my brain hurt having so much fun (tad scrupulous), because it does take a toll on my ability to do other things as the day wears on.
Much like the way people who get migraines or stomach aches don’t necessarily have those symptoms 24/7, sometimes I’m just fine. So that’s even more socially awkward, because one day I might be, say, subbing teaching a class with no difficulties, and another day I might want to hide from people because they persist with this crazy idea about talking to each other.
On a medium day I can get away with pacing myself. I do better if I’m the one choosing how quickly I talk and if I’m alternating with someone else. So a phone call to my grandmother works great; group Rosary not so much. On a medium day I might sing most of the best two hymns at church, but with a certain amount of lip-syncing interspersed because the pace is still more than the brain can take.
Simple, Manageable Paths to Insanity
The reason I’m writing today, mid-awareness-month, is not just because I’m procrastinating on other work (true) but because I was made suddenly re-aware of one of last year’s most interesting developments.
What’s happened is that we are now, thank you Hurricane Matthew, having beautiful southern autumn weather. Lows in the 50’s, highs in the 70’s, huge clear blue skys, low humidity, you can’t ask for anything more idyllic. This morning I dropped off the 5th grader at school and then picked up a few groceries on the way home, perfectly comfortable in jeans and a long-sleeved t-shirt. Sitting in the shade in the early morning, you wanted a flannel shirt — remember it was in the 90’s a week ago, so we southerners get a flannel shirt pass, thanks.
But let me emphasize: This weather is PERFECTLY COMFORTABLE. Important to the story.
So anyway, later in the day I laid down for a quick nap (because: procrastination makes me sleepy, ha). The bedroom was a comfortable 70 degrees. I’m wearing jeans, socks, long sleeve t-shirt, flannel shirt. All clothing is that perfect fit for temperature regulation, not-to-tight-not-too-loose. No gaps at the waist or ankles or anything. On top of this, because we humans cool down when we sleep, I pull on blankets.
Not just any blankets: A down comforter, and on top of that a synthetic comforter. You are now thinking to yourself this girl’s going to wake up a sweaty mess in half an hour.
Nope. It’s fall! We’re down to a brisk SEVENTY DEGREES! So it’s time to resume . . . the thing where we wake up shivering immediately upon falling asleep.
No, Really, I Can Do Winter
I spent many decades camping in the winter. When the huge ice storm hit twelve years ago, and we had no power for a week and the house was 45 degrees inside? No problem. I won’t say I enjoyed it, but we all slept great. I know how to sleep in cold weather.
What’s happening with the dysautonomia is that my body temperature drops too quickly when I fall asleep. In the summer, it’s not a problem — hence the fact that I had two comforters on the bed even though it was in the 90’s last week. Humans intuitively grab the amount of bedding they need, that’s a basic survival instinct.
I don’t have persistent hypothermia (which happens to some people). My body will eventually warm up the clothing and bedding and I’ll be just fine all night. But because of the steep temperature drop on falling asleep, I’ll go through three or four attempts at sleeping before I can stay asleep.
This will make you feel like an insane person.
You will remember that sometimes when it’s very cold, people will wake up in the middle of the night looking for more blankets. And then you will have to remind yourself: Those people aren’t going from perfectly-comfortable to body-shaking-shivering in the minute it takes to drift off to sleep. Under a lot of blankets. When it is seventy degrees in the room.
The Insanity of Dysautonomia
The maddening part of autonomic dysfunction is that every thing that happens is something that your body might also do under normal circumstances. People get hot or cold. Heart rates go up or down. Something like getting dizzy talking or singing? Hyperventilation happens. You have to remind yourself that gosh, no one else in church is begging the organist to slow down so we don’t all pass out. Every. Single. Hymn. in the hymnal isn’t some manic composer’s effort to see how many people have the breath to pull it off.
It’s not normal for an ordinary Sunday service to feel like some kind of survival-themed reality show. Last Congregant Standing — Do You Have What It Takes To Sing All Four Verses?!!
But humans adapt marvelously, and this only makes you feel crazier. You get used to the idea of needing an external heat source* in order to not be shivering on a seventy degree day. You get used to the idea of assessing how much conversation your brain can take before you really have to stop. You lose track of the fact that other people aren’t constantly managing all this weird stuff.
There’s more to complain about, but I’ll stop there. To summarize: Dysautonomia is a condition whereby your autonomic nervous system has gone off its rocker and is trying to take you with it. The end.
*For an external heat source, think electric blanket or heated mattress pad. Basically it converts your autumnal weather back into summer in the area adjacent to your body. If you also happen to need an extra two hours of sleep in the winter months because of the energy it takes to keep your body warm, if you religiously use such a heat source whenever you are sitting or lying still, it can buy you a couple more hours of wakefulness.
What’s with the radio silence? Let me just tell you.
But first, the reason I’m breaking it: My friend Sarah Reinhard asked me to blog on Theology of the Body stuff in the lead-up to this fall’sTheology of the Body Congress, which you should attend if you have the opportunity. The line-up of speakers is stellar, and yes I would go myself if I possibly could. So put that on your calendar.
The expression Theology of the Body among Catholics is a bit of a code word for, “Let’s talk about sex now.” I usually stick to code on these things. But there’s more to your body than just the parts and processes that make you a boy or a girl, as Susan Windley-Daoust will remind you periodically. I’m going to write not-about-sex today, and come back to racier topics here and over at Patheos in the next few weeks.
Now back on topic. A little Applied Theology and the answer to the question, “Why on earth has Jen Fitz completely dropped off the internet?”
Short answer is: I’m not doing as well, physically, as I would need to be doing in order to both take care of my primary vocation (marriage, parenthood) and this secondary vocation as a writer. So first things get to be first, and the rest has to wait.
The very, very, long answer:
But here is something completely cool, because God is like this: Just in time for me to have something someone really wants me to write about (instead of just me running my mouth off, which is my usual niche), I can totally sit at the computer and not be light-headed! Isn’t that cool?! I keep forgetting this new fact, and thus my e-mail is way behind. June was a pretty long month, computing-wise.
I theorize in part it was positional, which means I probably need to rearrange the workstation. Here’s an interesting link about cartoid sinus hypersensitivity, which might cause you to suspect I’m really an old man just posing as a pleasantly-plump middle-aged housewife, but you’ve seen the photos, so whom do you believe? Sports Illustrated or my cartoid sinus barocepter? Anyway, my parlor-trick for June was that I could drop my pulse twenty points just by, um, taking my pulse. No true cartoid sinus massage needed, just touch the thing.
It quit doing that, though, as far as I can tell.
Some other interesting body-things for this summer:
Dang it I can’t talk anymore again. The speaking-part works fine, don’t panic, it’s the getting light-headed while I do it that is at about 80% of the time. This is pretty common in tachycardia-themed autonomic dysfunction. (POTS people talk about this all the time in conversation, even though it never seems to make any list of medical descriptions, not sure why there’s that disconnect in the medical literature.) 80% isn’t 100%. On a good day I’m completely normal, on a lousy day I’ve given up even lip-syncing at Mass.
–> Autonomic dysfunction creates these weird eddies of backward expectations. Mass is pretty much my least pleasant activity, because it involves sitting still then standing still, with positional head changes (bad — I keep being reminded not to bow the head, just don’t do it), combined with talking. So on a miserable Sunday I can feel extremely overwhelmingly bad by the end of the hour. But because the problem is not at all with my heart’s ability to pump blood or my blood’s ability to hold oxygen, I’m the person who’s desperate to lay down while standing still, but will then escape without difficulty at full speed to the car and feel better as a result of the vigorous activity.
Basically I have this cardiovascular problem that makes being still feel worse and being active feel better.
Patients might be able to muster adequate energy for periods of time but it is usually short-lived and they tire quickly, not unlike a battery that discharges too rapidly. . . . A period of rest or sleep is generally required before energy levels are restored. Following rest a patient may demonstrate apparently normal stamina and a clinician will not detect weakness on examination . . . .
This is me completely: Do something, then flop on the floor utterly exhausted, and then in a bit I’m fine again. Happens hour-by-hour, and then also from day-to-day. More on that below.
I don’t know whether or not I have a mitochondrial disorder (very difficult to diagnose) but I get this, too:
Impaired oxidative phosphorylation [don’t know my cause] not only causes muscle fatigue but also muscle cramping with or without tenderness, or a feeling of extreme heaviness in the muscles. These symptoms are especially severe in those muscle groups being used, and patients often complain of discomfort in the legs or even muscle spasms.The discomfort may be felt immediately following the activity or later on, waking up the patient from sleep.
Funny story: I mentioned to a relatively new acquaintance that I’m prone to decrepitude, and the question she asked was, “So are you basically in pain all the time?”
The answer is that at this writing, no I am not. But I have picked up what is turning out to be mild-but-intractable intermittent pain (in my legs, if you’re curious), and yes it keeps me from sleeping well, and yes, I’ve tried all the things, and the things help quite a lot. (Other than deep breathing to relax, like the kind that works so well for childbirth — used to be my go-to, but now it just gives me a headache. Which stinks, because it’s a good method if your autonomic nervous system functions properly.) But I think it’s very funny because the words “every day” and “intractable” do apply even if the pain itself is not very bad. So if you use those adjectives, it sounds way worse than it is. I think most other people can also use those adjectives.
[By “intractable” I mean “intractable using means that don’t require a prescription.” I haven’t gotten around to being bothered enough to plead for the good drugs. So no, nothing to worry about at this time.]
And this cracked me up, because every receptionist I’ve ever met knows this about me now:
Exercise intolerance is not restricted to the large muscle groups in the body but can also involve the small muscles. Writing can be a challenge; too much writing leads to fatigue and/or cramping or spasms. The quality of penmanship can be observed to deteriorate over the course of a writing assignment with letter formation becoming more erratic and messy.
This is why you don’t want to receive handwritten correspondence from me. Nothing new, story of my life. Interestingly, I always take handwritten notes in classes, and if I don’t have a computer I’ll do my other writing longhand — but the writing degenerates fast into this baseline scrawl that’s just barely legible to me, and only because I already know what’s written there. Once it gets down to worst-level, I can sustain it for a long time.
And one last one which caught my attention, from the same source:
. . . Debilitating fatigue can occur with infectious illnesses, may outlast the other symptoms of the infection, and the recovery time can be very prolonged.
This thing I hate. I never know whether a cold is going to cost me a few days or six weeks. Weirdly, I used to go into nasty bronchitis every few years following a cold, and knock on wood that hasn’t been a problem lately. I just get all the fatigue. (Um, and I always have a cough. So, gosh, I don’t know. Don’t make me laugh and we’re good.)
Exercise does help. The supreme challenge is in figuring out how much to do. Too little, and you sleep poorly and lose conditioning. Too much, unfortunately, is not evident during the exercise. I can work out and feel great and be sure I’ve figured out a great balance between rest and exercise, and then at the end of the week completely collapse and require days and days of recovery before I’m functional again.
–> The convenient thing here is that I can in fact borrow time. If I know I want to be up for something, I can plan ahead, build up reserves, stretch them during the event through the clever use of pharmaceuticals, and plan to pay back afterwards. Difficulty being that the mortgage interest is steep. There’s no getting more out of the body than it has to give.
The inconvenience is that all the things I do are exercise, but some exercises are more valuable than others. So if I want to work on my core muscle strength, which is key to preventing the injuries to which I am prone, then I have to not work on helping you out with that thing you wanted me to do. Your thing is also exercise, but it’s a lower priority exercises, so out it goes.
Yes, I tried that thing you suggested.Not being snarky there. I’ve had a number of good friends recommend possible ways to improve the situation, and some of the ideas have been very helpful. (Even if the idea came after I’d already come across that suggestion and tried it, and thus could immediately report, “Yes! Thanks! That does help! Excellent idea, glad you mentioned it!”) Some things people have suggested and that I tried did not help for the reason proposed (I am not, for example, allergic to wheat) but do help for a different reason (minimizing wheat products makes more room in the diet for intensely potassium-rich foods, which help a ton).
So a thing that’s got me occupied this summer is obsessively managing all the micro-factors that can make the situation as better as possible. I think (but can’t be certain) that I’ve got the diet tuned to a spot where I can happily live off the things I seem to do best with, but also get away with deviating from the Ideal Thing at food-themed social events and no disaster ensues. If all that proves to be true, I’ll chat about it later. It might be just lucky coincidence.
Meanwhile, here’s the surprise of the summer:
It took me a long, long time to figure this out. Here’s the difficulty: The heat doesn’t bother me.
I live in a warm climate. I don’t mind being sweaty. I know how to dress for the heat, how to acclimatize as the hot season arrives, and how to get the most use out of a hot day. Since I cultivated these skills, I’ve never had any difficulty with the heat whatsoever, other than some mild irritation about the truly obnoxious portion of sauna-season, which you just have to deal with and move on. I even know the trick about watching for Seasonal Affective Disorder when the heat starts getting so annoying you hide indoors despite yourself. (Same solution as per winter – bright light & vitamin D).
The problem I had in figuring out this one is that (a) I’m still functional above the temperatures when people from up north start whining profusely, (b) I still don’t mind the heat or being hot, and (c) since I have any number of other things that also make me feel terrible, it’s not like I was able to say to myself, “Gee, I feel wonderful all the time except if I’m someplace hot.”
It’s a perfectly manageable problem, it just came as a bit of a surprise. Amusingly, my cold intolerance is getting worse, too.
The hardest thing: Not being able to concentrate. Since I’m a master-complainer, I don’t know that we’d call this my “chief complaint.” But it’s certainly my loudest. As in: If I told you I NEEDED the house to be QUIET so I could do this thing, that’s what I meant so please go OUTSIDE. This is the #1 reason I haven’t been writing. I’m home all day with four kids. There’s noise. There are interruptions. Note that my entire career as a writer has been carried out under these exact same conditions.
What happens therefore is that I drift through the day doing tasks that are super-easy, and then if I find myself in some unexpected situation like trying to cook while other people are in the room, it’s alarming to everyone just how badly things go (until I communicate my distress so emphatically that everyone goes and hides). And then I go back to easy things, and wonder why things that take my full attention just never get done.
So that’s the answer to the perennial, “How’s it going, Jen?” topic on this blog. I’ll emphasize here that as much I just used my crotchety trans-old lady powers to moan about the ailment for very many words, it’s not as bad as all that. But here’s a story that sort of sums up the situation:
Yesterday I was halfway through this post when I had to leave and get ready to go to a social thing at the lake. Sunday had been horrible, Monday was not that great, and Tuesday wasn’t impressing me. I was only going to this thing because (a) I wanted to go to it, and (b) my kids really, really, really wanted to go to it, and they’d done all the things I told them they had to do if they wanted to go.
So we went. And I was fine. Dreamy fine. No problems. Felt completely normal for the full three hours I was there, conversing, walking around, standing around, watching kids, etc. Some of the time, I’m completely, totally fine.
Moments like that can make you think you’re crazy. Maybe I just need to relax at the lake more often? Two reality checks:
Part of being fine was that I aggressively managed as many factors (fluid intake, electrolytes, staying out of the direct sun) as I could.
If it comes as a surprise to you that you went to an enjoyable, relaxing, time-limited social event and had no experience of illness during all three hours, probably the fact that this was an unexpected occurrence tells you something.
So we can add this to my list of signs something is not normal: If you get to where it’s a surprising occurrence when you feel well, we can infer that there’s a problem.
And dang my legs were like lead when I dropped a kid off at VBS this morning. So yeah, CAWOG. I’m rolling with it.
I figured since this was the All About Me post, if you made it this far you’re the type of person who wants to see my new haircut. (Hi Mom!) The third one is me posing in front of the dog’s blanket, which is still hanging up to dry on the screen porch a week after I told a kid to put it there. I guess it’s dry now. But I needed the contrast because I kept getting photos where the new haircut looked exactly like the SI photo shoot.
True story: This update is prompted by a combination of ennui and reading about people’s winter thermostat settings.
So everything is holding steady, which is good. Miracle drug still doing its miracle thing. I got hold of a fitness tracker this winter and have started watching the daily exertion count, which makes it much easier to manage my activity level, but also maybe a little more depressing (she said buoyantly). Basically the pace of six days on, one day off works pretty well, as long as the six days are “average”. I’m getting trained to take a second rest day preemptively if I know I can’t afford to bonk later in the week.
What doesn’t work: Continuing with a few extra average days, because you feel fine and anyway there are important things happening . . . talk about high-interest loans. Try to skip one rest day, and find your brain slowly draining away during the last couple “just one more normal day” days, and then your body is utterly laid out, as if you had the flu only you did not have the flu, for five days. Try to gain one day, lose five, and also alienate a few folks by your lousy social skills during the pre-collapse decline. Yeah, that was a neat experiment.
So that trained me to be aggressive about managing rest, and overall it was a beneficial experience because without the certainty that rest is a non-negotiable, it would be much harder to set the boundaries. Also, I discovered all these interesting BBC miniseries, so it worked out. Essentially I can tell how sick I am by how interested I am in television. Healthy = Zero Interest. Medium = I’d rather be writing. Desperate = Is There a Law that Brendan Coyle has to be in Every British Period Drama Ever Made Since 1991?
The surreal part of all this is that I find myself thinking, about myself, Well, um you don’t look sick to me. That’s a good thing (yay modern medicine) because pallor and gasping and feeling perpetually buzzed is overrated. The new normal is operating like a completely normal person, and without any particular difficulty, other than that normal happens to be at the limit of my physical capacity. But that at-the-limit situation doesn’t how I’d think: It’s no problem at all at any given moment to quick sprint across the yard, or take a long walk, or haul boxes of stuff in and out of the truck, and so everything seems completely not-sick. The hitch is in the number of days I can pull it off for, before I find myself suddenly struck by the Useless Fairy because I used up my minutes.
The other confusing thing is that if I’m on an even keel, things that other people find difficult, like spitting out massive quantities of punditry, are easy. Effortless. Which makes it seem like I’m a person of leisure and boundless productivity, when what I’m actually doing is preventing myself from going absolutely mad while I ration the physical exertion like an exercise miser.
I think that’s what it is: Being actively sick was like being exertion-destitute. Now I’m upgraded to the exertion counterpart to living on a very frugal budget: It isn’t that you can’t live on it, and have nice things and go places and all that; it’s that in order to make normal life happen without careening from crisis to crisis, you have to spend your limited resources very carefully.
Oh, so the thermostat story: We’re the kind of people who don’t turn up the heat in the winter. Normal winter thermostat settting was low sixties during the day, down to 55 at night (if it got so cold indoors, which is only in the depth of winter), and with a little blip up to 65 in the morning during shower-time. Also we’d push it up over 65 if guests came over, because people don’t always dress for winter during winter. We have a small wood stove in the living room that lets us do the cozy-around-the-fire thing in the evening if we want to as well.
Seemed to us like a fairly moderate regime, far less rigorous than the norm throughout the bulk of human history, but perfectly manageable even living in one of these societies where you’re expected to engage in full-immersion bathing every single day of the year, no matter how cold it is outside, thank goodness for hot water heaters. (I don’t mind a hot shower nor the benefits of obsessive hygiene, this works out for me, product of my time as I am.)
But what happened was that as soon as the house got cold, I completely turned into a slug. The new-normal wasn’t sustainable. I theorized after a little research that since I was already living at the limits of my endurance (which sounds more dramatic than it is, but still, is the case), the extra load of trying to keep the body warm was pushing me over the edge. I set the thermostat to “hold temp” at 65 night and day, and sure enough the body reverted to its normal cycle of productivity.
So now when I see people talk about thermostat settings, I have a whole new layer of curmudgeonly thoughts that I don’t share. To summarize: You don’t need to turn the heat up, unless you do.
The answer to, “How’s it going, Jen?” remains, “Pretty well, thanks!” I resurrected the Nine Annoying Things Novena over at the blorg last week, and the pray-ers did well. Hence today’s story:
So I go see Dr. Maybe yesterday, and they did the dreaded Six Minute Walk. And here is the very, very, What is wrong with people? situation: I did almost as well as predicted.
Seriously? Is this really all they expect out of pleasantly-plump 40-somethings? You’re kidding me.
You do the walk with a pulse oximeter, which means you can cheat and watch your heart rate. This is handy if you are the kind of person who knows at about what heart rate the gasping kicks in (see archives below for the secret), and thus you can maximize your distance by walking right at that special speed where you’re coughing a bit and your head feels like you just tossed back two glasses of champagne on an empty stomach, but hey, you aren’t going to faint, and even though death feels like the perfect next step, you can do it for six minutes. Or at least, you can do it that long if a stern nurse in pink scrubs gives you a face like she’ll spank you if you quit early.
It appears the pulmonologists aren’t big believers in pedestrian transportation.
Anyhow, I like the new guy, whose brain jumps around so much I finally pulled out a notebook and made a list of all the tests and appointments he was rattling off, because I had a feeling one or two might get lost in the shuffle if no one wrote them down, stat.
Ruled out again this morning — for good, this time? — pulmonary embolisms. Sent away three vials of blood — I’m not sure he’s quite to the point of looking for tropical diseases (I’ve never been to the tropics), but he’s almost there. More interesting tests coming along soon, looking for weird variants on regular asthma and exercise-induced asthma, and also he’s going to see if he can get my heart rate up high enough (on a treadmill, not with those evil chemicals) that the O2 levels drop, or something else interesting happens that gives us a clue.
We’re having real problems with finding clues. The trouble we’re having is that I’m dreadfully healthy for someone who’s sucking wind and coughing while ambling at grocery-store pace, minus the cart.
Blorging over the past couple weeks, for those who don’t subscribe:
May 3, 2014 Guns in Church: The Divide Boils Down to Subsidiarity – I don’t much write about gun stuff. But when the Archbishop of Gunlandia does something to tick off all his redneck parishioners, someone has to get out some catechism quotes, right? FYI – post includes a link to my A/C article where I say there, concisely, what I’ve said here, verbosely: This is a topic on which Catholics of good will can disagree, and catechists need to leave their agendas at home.
April 29, 2014 Heart Rate Training for Fitness in Chronic Illness – This is actually a useful post. It’s how I managed to nearly pass the 6-minute walk, despite being seriously seriously not well. And if I’d taken the walk two days earlier, I would’ve aced it out of sheer racing-preparation common sense.
April 24, 2014 A Deadly Faith – Gospel Reflection @CatholicMom.com – I had forgotten all about writing this, but then I read it, and it was really good. Surprisingly good. Follow this to get the link to the CMom piece, and yes pastors, you may run it as a reprint in your bulletin next time Holy Week comes around. Or whenever.
Went confession last night, and sneaked over to Mass this morning. Happy happy.
Kids were off here, there, and everywhere, so SuperHusband sneaked me over to a very good (not expensive, just good) restaurant after confession, and I lasted 2/3rds of dinner before I was ready to go lay down or something. The poor waitress was mortified, because, sure, the service was slow. But it wasn’t that slow.
A little PSA . . .
Today at Mass, the lady in front of me just wouldn’t kneel. She sat through the entire Mass! Leaning against the wall! And she hardly said anything out loud, at all! It’s like she was really tired or something. There was a big open space in my pew, so I could have scooted over, I suppose, if I wanted to kneel. But it seemed like a much better idea to insist on kneeling right up against her — personal space is so, so, contrary to the spirit of the Gospel, isn’t it?
Please tell me I did the right thing.
Pious but Clueless
Personal space is not contrary to the Spirit of the Gospel. Consider scooting over one space in the pew if the person in front of you is not kneeling for some inexplicable reason.
Meanwhile, over at the blorg . . .
More meat talk. Because even in America, you can do this abstinence from meat thing all year round.
Giving up the Sunday Work Habit. Which is not as simple for Catholics as it is for everyone else, but still, it’s something you are supposed to do, if you can.