Disease Fatigue

I am tired of being tired. I am sick of being sick.

No, there was never a time when I was the opposite – happy and well-rested to be sick!

But the waves of soul-crushing weariness are worse than the ever-present niggle in the back of my mind that says “I am not okay with this situation.” This is not the physical fatigue, in its many different flavors, that comes from my diagnoses. This is a different beast.

  • I’m tired of medical paperwork, of sitting amid white drifting dunes of medical paperwork and sobbing a salty sea.
  • I’m tired of flaking out on friends because my body is flaking out on me, of feeling my hard-won “adult” reliability splintering away, mica under pressure.
  • I’m tired of drawers full of medicine; the half-sob, half-laugh and sick feeling in my stomach when I realize I use pill containers designed to last a week for a single day and they’re not quite cutting it anymore.
  • I’m tired of getting emails from doctor’s offices, because it happens so often that when the notification chime dings I’m starting to jump because it means one more thing
  • I’m tired of phone calls to doctors: I’ve heard the hold music so often for one hospital I can improvise a vocal obbligato over the top, and then cry because I can.
  • I’m tired of the adrenaline jolt when the hospital’s extension appears on my phone’s screen, of feeling hope and fear so intense it robs me of thought, leaving me gasping on the end of the line.
  • I’m tired of managing med schedules, of 4th grade all over again and the problem about the wolf, the cabbage, and the goat crossing the river… except instead of the goat dying, I’ll get messed up instead. Med A must be 2 hours after Med B, and without food. Med C will react with Med B. Med D must be taken with food. You can’t eat unless you take Med B. … it is exhausting, physically devastating to miscalculate, and it happens many many times every single day.
  • I’m tired of physical therapy appointments, when I feel woefully inadequate and physically exhausted from the most basic of things.
  • I’m tired of doctor’s appointments. It’s the endless procession of scrawled blocks of green on a calendar or reminder alarms the day before, reminding me yet again that I am ill . . . as if I could ever fully forget. It is crying from the continual fight to get to those appointments, and the hope they bring of a solution, and the despair when they don’t. And finally, the black hopelessness when the appointments dwindle from a flood to a stream to a trickle and you are left alone in the same fight.
  • I’ve very tired of tests, of calling a friend yet again for a ride, because you’ll be to ill to take care of it yourself… and calling another, when that first choice is busy with their own life, and then a third.
  • I am so extremely tired of hospitals. It’s quaking terror disguised with a grin and a selfie of patterned gowns and lights and monitors and cuffs and questions.
  • I am tired of having to think about where I am going to stop and rest. There is a profound mental, physical, and emotional exhaustion from simply taking a shower or grocery shopping, and knowing I should be grateful for still being able to do even those little things with perhaps some adaptations. And then crying when I don’t feel very grateful, because I want so very desperately to not even think about if whether or not I can make it across the store to get the milk I forgot on your first pass through. I continually map routes for how I will get from point A to point B; it’s Everests and Death Valleys and Northwest Passages all disguised as steps from the parking garage to the sidewalk, or a big cobblestoned hill wrapping a half mile to the next classroom.
  • I’m tired of reading medical research. It’s holding back the thought that n=me, and for every statistic that had this reaction, that did not respond to treatment, that had recurrence, this is me, a human, not a number… and fighting through because of knowing that if I’m not informed, I won’t be able to defend myself against the doctors who are uninformed, and if I don’t advocate for myself, I’ll end up even more sick or hurt than I already am.
  • I’m tired of feeling awful, of not being able to make it through an errant “Weight Watchers” commercial without grabbing for a bucket on a bad day.
  • I’m tired of hurting. It’s a spear made of ice, flickering with flame, plunging into me, as I smile at the girl telling me the elevators are only for staff, while I talk her through disabled student access and NO I DON’T HAVE TO TELL HER WHAT’S WRONG WITH ME TO TAKE AN ELEVATOR INSTEAD OF 6 FLIGHTS OF STAIRS. (And for the record, the next time I came in, she apologized and was very kind.)
  • I’m tired of not knowing. I have about 82% of my symptoms explained by diagnosis right now, with the feeling that could change to 0% at the whim of my body or a doctor the next day.
  • I’m tired of being scared of when the next bad thing will happen – when the next diagnosis comes, when the next crash will happen, when the next time allergic reaction hits, of the uncertainty of it all. It’s that feeling of dancing with the Grim Reaper, a slow, macabre waltz, whenever I risk eating a food I didn’t prepare myself, and even then — is this going to be the time anaphylaxis hits? Will I have enough time to counter it?

Disease fatigue. I heard it called that once, like generations ago there was “battle fatigue” (before the term PTSD/PTS replaced it). Disease fatigue, when the burden of sickness, quite apart from the real fatigue of a disease itself, is overwhelming.

In a strange way, the name itself gives me hope. Not the term itself, no — fatigue in the world of disability is not always, not even usually, something that goes away with rest. No, it’s the very act of naming that is important. Something named can be recognized, and have boundaries. Something named can be endured, and eventually, even if today I can’t actively battle, it can someday be fought.

And like most things named, it too shall pass.

 

 

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8. Things I Wish My Professors Knew About Being A Chronically Ill Graduate Student

Some problems are the same that every student with disabilities faces when trying to study: I wish they knew how hard it was to get to class on time when I have to wait for elevators or take a different path. I wish they knew that flickering class lights can give me migraines. I wish they knew that it’s not that I’m uninterested, it’s just that my body language conveying my interest is going to look different from everyone else’s. I wish they knew that it they don’t have a lot of choice about whether to actually do agreed-upon accommodations or not — if there’s paperwork and it’s been deemed reasonable, that’s that. I wish they knew that outside class activities are going to take me twice as much work, or might even be impossible. I wish they knew that I can’t eat food when it’s brought in to class, for whatever reason. I wish they knew that being in their office when they’ve just smoked or put on perfume can trigger an allergy attack. I wish they knew when they decide to take the class somewhere else besides the classroom — be that a walking field trip, class on the lawn, or a stroll to the local pub for seminar — I know I’m either going to cry at the agony that puts me in or bawl from the shame of speaking up and asking for a ride, another route, or a different place.

… Everyone else wants to hold class in the pub. Why can’t I just go along? Why can’t I be normal? Why do I have to cause trouble, be special, make more work?

I wish they knew how badly I want to be normal and simply go enjoy seminar in the pub with everyone else.

7. Things I Wish My Professors Knew About Being A Chronically Ill Graduate Student

I wish some of my professors would realize how horrifically expensive it is to be a chronically ill and a graduate student. I can see it on their faces as I try to fit in a few more hours of work or pass on attending conferences. “But there’s grants that cover some of it,” a few might protest, or “shouldn’t you be writing your dissertation instead of working?” The kinder ones also mention things like “knowing you have to eat” and “student budget.”

I spend literally thousands of dollars each year in medical care. Even once I’ve paid for my insurance and met the deductible, many things that I need to function — including medical devices —  aren’t covered by my student insurance. Then there are the countless other things that add up: Lyfte or Uber, on days when I can’t drive and public transit falls through; crucial supplements; more expensive food as I become intolerant to basic cheap staples like ramen or peanut butter; even delivery costs for things when I can’t find a way to get to a store or a distant compounding pharmacy. It’s not that I’m not managing my money, or that I’m not trying to save, or any of the other common financial tips. (Saving for a rainy day when you are constantly, chronically ill … it’s not a “rainy day,” it’s a monsoon that will last the rest of your life.)  ‘

It is just very expensive to be sick.

6. Things I Wish My Professors Knew About Being A Chronically Ill Graduate Student

I wish my professors would realize how surreal school sometimes seems to me.

At first, you see, it was hospitals and doctor’s offices that felt surreal. My future life as I imagined it could and did crumple and blow away like dust and ash in rooms with cheerful accent walls, posters of kittens and skeletal systems, and crinkly paper robes. Repeatedly. It was surreal.

Then I spent a lot of time in hospitals, listening to the banter of the night nurses and the jokes of the janitors. Those places became, if not comfortable, at least familiar. School felt surreal then, with its very artificial deadlines and rules. In the ER the deadline for the man who had been hit by a car was real, the rules for resuscitating a patient in cardiovascular collapse because of anaphylaxis were real. School was an absurdity, ridiculous in the amount of effort and stress being expending over 7 pages in Times New Roman that would only ever be read once.

Sometimes it all feels surreal, especially when I jump in between a world where almost everything is life and death to a world where everything is made-up and meant to teach safely. There isn’t a lot of room in my life between those two poles for normal living. I worldjump instead, losing a bit more of myself with each trip until I feel like a ghost, out of place in both planes.

Oddly, the place where there is life and death around every curtain is also the place where dark humor reigns, but the place where there are tests and quizzes behind every classroom door is sometimes taken oh so very seriously. There’s not anything to be done about this — it’s up to me to manage the worldjump. I just wish that my professors knew.

 

5. Things I Wish My Professors Knew About Being A Chronically-Ill Graduate Student

I wish they understood how and why graduate life can be isolating for someone who is chronically ill.

Professors might reminisce about the good ol’ days studying together over drinks, scraping together papers last minute, and doing rambunctious and borderline insane physical stunts. That’s great. But it’s not going to be my life. I can’t rock climb, I can’t go out drinking with my fellow students, and I can’t even be designated driver anymore. I can’t stay up late partying, or even just stay up late most of the time. Even if my mind wants to party the night away, my body needs a heating pad, ginger ale, meds, and sleep.

I’m seen as insular, not engaging with graduate life, non-participatory, etc., and by more than my cohort (most of whom actually understand). Professors have pulled me aside to ask about why I’m not hanging out with the rest of the graduate students. I have gotten kindly meant tips about everything from battling depression (because I’m pulling away from people) to ways introverts can have fun at parties. The social side of professional academic life is important, and professors are watching to see that we’re developing those skills and representing the department well. If I’m not at the 9 pm-12 am conference reception, I’m seen as failing that unspoken test of graduate school life. Furthermore, as a graduate student in the fine arts, there are often alluring late nights of concerts, talks, dinners, operas, showings, and presentations. But I really have to pick and choose which ones I even try to attend, and I can’t do them all. The physical cost is just too high. I still have to teach at 9 am the next morning.

In this age, there are other ways to make contact with people. There are ways to fundraise, to network, and to present research that don’t require robust good health. The field needs to recognize that these options are legitimate and begin to make accommodations a matter of course. Professors need to realize that not all routes through graduate school are going to resemble their own — but until then, I’ll probably still be stopped and interrogated every couple of weeks about my life choices.

I wish they’d realize I’m not deliberately a hermit — I’m just sick.

4. Things I Wish My Professors Knew About Being A Chronically Ill Graduate Student

I wish my professors would realize that if I’m quiet, curled into a ball, and white, it might not be because I’m emotionally upset. Even if there are tears in my eyes and my face is screwed up! More likely I’m just trying to get through class without screaming in pain, throwing up, or passing out — and possibly all three at once.

I’m not a drama queen that has a bad breakup every week.

I’m just chronically sick.

2. Things I Wish My Professors Knew About Being A Chronically-Ill Graduate Student

Graduate assistants often function as the dog’s bodies of a department. We fetch, carry, grade, make emergency extra copies, and cover shifts and lectures. If something needs to be put on reserve or the guest speaker for the conference needs a ride to the airport, that’s a job for the graduate assistant pool. We’re expected to learn the ropes this way. Sometimes it is fairly useless drudgery, chores that just have to happen for the craziness that is an academic department to remain fixed on planet Earth instead of spinning off into the aether. 🙂 Other times it is genuinely exciting, professionally stimulating, and career molding … but to be honest, there’s usually a lot more of setting up tables and proctoring makeup exams. My department even established a 3 hour service requirement (in addition to any other teaching/assistant tasks we have) and a graduate pool. Any professor can submit a request, and then we of the pool are all duly reminded of our required hours and offered this great opportunity to fulfill them by simply…

As a graduate student with chronic illnesses, I have a hard time jumping whenever a professor demands it. Actually, I can’t really jump at all! I can’t carry heavy loads, I can’t run places, and I can’t help move heavy pieces of furniture around to set up for events or class. I have to take medications on a set schedule frequently, so rearranging my day on the fly to substitute teach class or cover a shift is also complicated. To “run and make a quick copy” involves no running, for starters. It does mean mentally mapping out a building to find a safe route to the copy machine and then taking this often more time-consuming path. It means waiting for elevators and struggling with doors. Then finally, it means waging the battle everyone faces: beating the always-finicky department copy machine, large enough to swallow a small GA, into submission 🙂

In my building, “quick copy” suddenly turns into 20 minutes. No one is very happy about that.

So I wish that professors and the administrators of graduate programs realize that not everyone is going to be able to do the typical graduate student tasks. I wish they realize that the reason they are not getting notifications from offices of disability services about this is NOT because they don’t have graduate students with disabilities. It is because there is no mechanism in place to address this situation. Graduate student chores are not a defined job activity. They’re not directly associated with classwork. Until there is a conflict, the ombuds office is of limited use. It is a gray area, and the only way for me as a student to deal with this dilemma has been to notify each and every person individually. Most of those professors have no idea how to proceed in a situation like this, and there can be a lot of varied responses of differing degrees of appropriateness. It means a lot of confusion and missed opportunities. It takes a lot of time.

I think it’s possible for departments to use their graduate students with disabilities in ways that will still be beneficial to the department and not damaging to the student. It will require more thought. It will require more planning. It will require a lot more tact.

It can be done.

Thankful Like a Fairy

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It’s that time of year here in the United States when little construction paper turkeys appear on fridges and people suddenly remember that pumpkin is edible. Thanksgiving often feels more like a breather in between the heavier loads of presentations and finals, usually with a side of grading. It’s the end of the term, and everyone is feeling a crunch that has little to do with frosty grass or fallen leaves underfoot. Periodically I see little flyers scattered around, all variations on themes about thankfulness, gratitude, and the like. I usually read them with some trepidation, my mind clouded by rubrics and inner debates about the ontology of musical meaning. Most often I feel that I don’t measure up on the thankfulness scale at the moment, and then all I’ll be is annoyed and guilty before my mind scutters back to the meta-musical-microcosm.

That’s because, I’ve concluded, I’m thankful like a fairy.

“Tink was not all bad: or, rather, she was all bad just now, but, on the other hand, sometimes she was all good. Fairies have to be one thing or the other, because being so small they unfortunately have room for one feeling only at a time. They are, however, allowed to change, only it must be a complete change.”
 ~ J. M. Barrie

When I’m thankful, it is an overwhelming flood of gratitude. One the flip side, when I am not thankful, I’m sometimes every dark emotion there is. It isn’t simply sniveling ingratitude, it can be an epic funk and a devaluation of my very existence. That is ungratefulness of the highest order.

However, fairies are allowed to change… and the musician in me insists that practice makes perfect. So here are some of the random wonky things a fairy brain is thankful for on a Monday:

  • Lyft! I’m running late, and for less than a day’s worth of university garage parking a wonderful clean car pulls up to my apartment door and then drops me off at the door to my building.
  • The fish faces my students, locked out of their classroom on the top floor, are making against the glass at me as I walk into the atrium 3 stories below.
  • The fact that the sound equipment and TV in my classroom worked … on the first try!
  • My butt. Sorry folks! Chronic illness can take unexpected tolls on weight, and in my case I lost a lot over the past couple years. If you have a job that requires a lot of sitting then you can imagine that not having much of one can be a little painful. Thanks to the discovery of King Size Fritos, bean dip, and allergen-free chocolate cookies, I’m working my way back to normal weight. It is great.
  • Trader Joe’s fish sticks and Simple Truth potato puffs (aka tater tots). Yes. It’s more borderline junk food, and I can eat it without having a reaction. I love being able to eat without an allergic reaction.
  • My advisor. We’ve had a bit of a chat about my medical conditions, finishing in a brief “how to administer epi” course. When I told him this morning that I was still struggling with the aftereffects of a recent ER-level bad reaction, I was let out of a weekly meeting and got to go home early and rest. I don’t know how this will play out, but today I am very grateful for that understanding.
  • The lighted brick path that sweeps past the hotel, lined with lights and ending in an impressive skyline backlit by a sunset that looks good enough to eat. OK. Maybe I was hungry today…?
  • The long conversation my busy exhausted mom gave to me so I could walk around this evening, enjoying the sunset, feeling safe and not so alone. Truly a marvelous gift. 🙂

 

One Thing I Learned

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I was innocently reading a web page and abruptly ran into a challenge: What have you learned from being chronically ill? What has changed for the better? The challenge was given with the protestation that this wasn’t about being all Pollyanna about the miseries of being chronically ill, but when they looked back on their journeys, there had been positives.

I know there have been in positives in my life due to chronic pain and illness, and one of the changes I’m embarrassed to admit. Most who follow my blog might, by now, have picked up that I like nature. Maybe, perhaps, I’m a wee bit nuts about it! I enjoy taking pictures of colorful but still very buggy bugs routinely. I was raised to enjoy the outdoors and when my dad handed me a Nikon film camera when I was a tween and started to explain the magic of photography, I was hooked. But when I first moved over 2000 miles from my tiny coastal village to a large landlocked city, I had a pretty horrendous attidude about their version of the “outdoors.”

It was a city. It had parks. With smooth asphalt paths and a few carefully marked, well-traveled, wide “nature trails”—code for something that often had little educational signs periodically and maybe even pooper bag dispensers. The trails were all easy, and almost everyone on them believed that they were really experiencing nature or “hiking.” I did one park’s trails 3 times before lunch one day and then gave up, disgusted. I went through three different sporting goods stores before I found one that had hiking boots. The stores did have ATVs though, to make it easier to pack out after a successful hunting trip—or perhaps to pack in an adequate amount of beer for the trip. There was some good hiking several hours’ drive away, but I had been used to literally walking 10 minutes from my house and finding my way around a preserve on trails that no one had ever bothered to label. Even in my master’s program, everyone escaped into the mountains every chance they got and some also for some chances that probably weren’t really chances but just phosphenes from squinting too hard for a second. Didn’t matter. They were “outdoorsy” and proud of it, and that didn’t just mean ties with pictures of deer on them.

Now, I did think that it was cool that there were accessible trails and playsets and treehouses scattered about, but I’m ashamed to admit that I thought pretty much every trail in the city was accessible. I had a plenty of scorn and very little consideration for anyone who believed differently,

And then I went from having a condition that was supposed to be permanently fixed to having a condition that was less fixed to having multiple surgeries and diagnoses and needing help to make it to the bathroom. My world drew in on itself, and I was so sick I didn’t even notice the suffocating snugness of it until it was practically skin-tight. I couldn’t walk far at first, but eventually I began to stagger around one of those little looped asphalt paths. Those tiny jewel-like parks meant a lot more to me.

A lot of my butterfly photographs are taken at parks like those, a couple hundred acres of playing fields and playsets. Some of them have woods and natural areas—fields left to grow wild, ancient trees with the scars of past disasters still visible in their trunks. With a bit of care and a long-range lens, many of my photographs give the impression that I’m much farther in the wilderness that I actually am.

I learned that not all the trails I had thought were “accessible” were really accessible at all. I learned that there were many different ways to appreciate nature, and not all of them involved putting on a pack and hiking. My world had shrunk to me like a cotton shirt that had accidentally been washed on the hot cycle—now, with the help of friends and parks and ramps and door paddles and elevators, it began to slowly stretch out again. I appreciated the kindness of the people who graded the difficulty of the trails and made some short loops—bugger my old self, so proud at being able to do them all in a morning! My old self was an ass. The one place where there should be plenty of room for everyone—our parks—I was perhaps the most judgemental about sharing in any meaningful way with people less fortunate than I.  There was room at those parks both for people wanting to take a nature walk and for people like me to lap them. The only place that hadn’t had room was my mind.

I’m still learning. I hope not to stop learning any time soon, either. I hope I’m not so arrogant now as to think that I’ve mastered the art of empathizing with others, or that I’ve suddenly solved the problems of accessibility in public nature preserves. I also still find myself thinking that many people in the city need to redefine what they think of as “wilderness” and “hike” yet, too. I’m not quite so far from my old self as I’d like to be! But neither, thanks to chronic illness, am I the same smarmy, scornful girl of five years ago who mocked trails that were less than a mile and had handrails. For that, I am grateful.

“The Hunt for Red October Butterflies”

Or so my friend laughingly dubbed it. It was one of the most terrific weekend jaunts in recent memory.

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A few weeks ago we both, unbelievably, carved out some time from the hectic sprawl that was our lives. We decided to go to a park and take a walk… with our cameras! Squeal!!!! We gleefully charged up camera batteries, set up pickup times that we both were probably going to miss, and forgot various sundry and important things (or at least I did—my water bottle. If you have POTS and it’s a hot day, which it was, that’s just a bozo no-no, as my mom would have called it).

She’s an incredibly dear friend, knows my love of chasing butterflies with my camera, and as a fellow photographer is patient enough to wait for a minute… or twenty … while I slither around on the ground trying to adjust aperture and focal length and whatnot.

As a personal victory, I walked farther than I had in quite a long time, and we crossed this railway bridge!! First, I’m scared of heights. Truly, honestly scared. Second, there weren’t any railings or other things for me to grab. Third, it required stepping over the gaps onto each old tarry beam. Fourth, some of those beams were in pretty bad shape. Fifth, my sense of balance can be very bad, a side effect of POTS and having joint hypermobility. Basically, it means I’m a little bit closer to fainting than the average person at any given moment, and my joints wiggle just enough that my body has a hard time determining where it is in space. Thankfully, with the help of an insane number of drugs and a lot of work, it no longer feels like I’m walking across the deck of a ship in a storm. Instead it feels like I’m on a floating dock, or maybe a bowl of really stiff jello. It’s an improvement, but periodically the earth simply tries to shake me off. How does a POTSie cross the bridge, then? VERY slowly, with a friend holding on to her hand, bracing and providing a balance reference point, coaching her over the rough spots, showing her where (and in the case of the ones half eaten through, where not to!) step. I was laughing breathlessly from adrenaline and triumph every four steps.

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I did refuse to go back the same way.

And then, amazingly, right at the end of the walk, we found butterflies.

And it was one of the several recent gasps of hope amid the drowning flood that has been illness and school. It was pretty close to a real hike. There might be a reason to replace my hiking boots yet, and not just because they offer great support for wobbly ankles. Maybe I didn’t need to think that holding onto my hiking camera daypack was being selfish and fanciful of me, just yet. Maybe I’d eventually be able to walk for miles and miles again, like I had before.

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And all the maybes aside, I certainly had a simply fantastic day at a local park, chasing butterflies, tramping across bridges, counting the number of bridal parties all posing for shots around the gazebos and fountains, and talking with a friend. And that was joy itself.