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.

 

 

Advertisements

Dysautonomia Week – Tuesday

Gnocchi with smoked salmon in a garlic (lactose-free)-butter sauce

6:56a – I wake up before my alarm, again. Same routine of choking and hacking, thanks to this cold, except worse. I’ve gotten about 5 hours of sleep, I think. Way less than it feels like I need. I move to the alarm slowly this morning. HAH. One mistake less. This means I’m moving earlier. I even take a shower, turning the water up hot for a bit and sitting on the floor to enjoy it. Heat means vasodilation, the fancy term for my blood vessels opening up wide and letting gravity pull that oxygen-laden red stuff away from my brain to my toes, which really don’t need that much. Thanks to meds, it’s not bad this morning, and I’m sitting more from exhaustion than from graying out. I like this. This is good. Also, the water goes cold pretty fast. The hot water is free in my apartment. I think it’s the management’s way of making sure we don’t complain when it doesn’t last that long in the morning, because after all – it’s FREE!! By the time I finish steaming my sinuses, I’m feeling like I can manage class.

8:20a – I’m running late but that should be okay. The shuttles are staggered, and I’m near 3 different stops. I really don’t want to drive.

8:23a – I spent several minutes just staring at handy bus app. See, the shuttles here are on a “continuous loop” – there’s no set schedule. I can’t reliably think to myself each morning “the shuttle leaves at 8:13. And there’s another at 8:24 if I miss that one.” Instead we get this handy app that’s supposed to show the real-time location of the buses (hint: it doesn’t). The staggered looping schedule should mean that a bus is near me about every 15 minutes or so, but today all 3 are in a tight little clump. They’re not going to come my way for almost 30 minutes, and then it’s a good 15 minutes (depending on the route, a little longer) into campus. On Tuesdays a friend parks his car behind my garage. He’s left me his keys just for situations like this. I grab my gear and try to make sure I think. Slow is smooth, smooth is fast…

9:00 – I set up in a classroom I’ve only taught in 2 times before. There’s a table and a chair near the podium, and the classroom is small enough so I should be able to sit instead of stand. I yank and tug on cords in a manner that would make most IT folks cringe, until I can actually put my laptop on a corner of the table and stay seated for most of the class.

10:05 – I SURVIVED!!! I had to sing Home on the Range – very badly, with almost no voice – to my class, who didn’t know that piece. I taught mostly curled up in the chair, slugging tea, but for all that it didn’t go too horribly. The sound worked, as long as it was through the crappy projector speakers. (The other TA’s projector broke.) I played about 4 measures of a Bolcom rag, also very badly, standing up over a classroom upright piano. And yes, that piece of “tech” worked! I didn’t have the coordination to play standing up and stomp at the same time, unfortunately. Check out the piece if you have 5 minutes and 34 seconds to spare. I LOVE it! https://www.youtube.com/watch?v=MzorssRJce4

And now there is the after-teaching crash coming. The floor is so wobbly. It couldn’t be me. It must be the floor. In the bathroom I notice that my neck and chest are covered in bright red splotches, some of them starting to bump up a little. Oh. Well.

11:30a. Went home. Had to pay $7 to spring my car from the garage, because talking to people and a long line of cars trying to exit meant that I slid over into the next time bracket. Moved the cars around at my apartment again. I should just drive over to that pharmacy and pick up the meds and that binder, but I’m so tired. There’s no way that would be a good idea, or a safe one. Had Fritos for “breakfast” because even though I did have some time this morning, I was still feeling too sick to eat. Then I’m crawling into bed. I still have a few bright red splotches.

2:30p: Nap didn’t happen. Between a few phone calls, emails, canceling my evening jobs, and a package being delivered, there wasn’t a chance. I did get to lay down though, and that makes me feel instantly better. I also found out that one of my two Mighty articles was featured on their Facebook page!! I’m thrilled. I watched a bunch of movie trailers and videos of people doing amazing things with their bodies on American’s Got Talent while reading through a workout guide my new cardiologist gave me last week. I’m hoping the clips inspire me, and they do. I should be working out right now, but it seems like being sick is regarded as an okay reason not to work out according to the guide, and my body seems to agree. I get a phone call from the cardiology nurse: my meds are getting moved to the right pharmacy (yes, I have three different pharmacies to keep track of). I’m also supposed to go to the children’s hospital for some testing. And here I thought that this week was going to be chill.

6:30p: I’m outside, sitting on the asphalt in front of my garage, grading. There’s sun. It’s nice, but not really hot. I start to nod off over the last few tests. There’s birds singing, people going back and forth, and although I’m running low on Kleenex, this is great. I might make it through this bunch of grading after all!

9:38p: I’m so not going to make it. I went inside when it got cold and kept grading, but I just kept nodding off. I’m making some quick gnocchi for dinner because I feel bad about just eating Fritos and chocolate for the rest of the day (as I should). But I’m really not hungry. Cold, dysautonomia – take your pick. But food just isn’t what my body wants. It wants a sauna and someone to carry me around on a liter, dripping fruit-and-herb infused water into my mouth every 45 seconds, and cold meds I can actually take. I am trying to remind my body that I am not some romanticized Western idea of an exotic Persian princess from yore, or some such nonsense. I’m a grad student in hiking boots and neon green compression socks, and I have 8 papers to grade and my med containers to refill for the week before tomorrow at 10am. And that’s the timer for dinner.

1a: Going to stagger off towards bed. I’ll finish the other papers tomorrow morning, when hopefully it will go a little faster. I’m exhausted, but I only have to make it to 11:30 tomorrow morning. There’s nothing that pressing for Wednesday afternoon, although there’s certainly things that need to be done. Only 10 1/2 more hours, and I’m in the home stretch of the week. Something’s definitely triggered my allergic response, though – I keep breaking out into a flush/rash, and there’s blisters in my mouth. I usually get those with cooking oil (fries in soybean oil, or chips in sunflower/safflower oils, for instance), but I don’t know what I ate or did that could have triggered it this time. Maybe that’s just a sign of an exhausted brain instead of a new food trigger. My hope is for the “exhausted brain.”

I also Googled the test that I’ll be doing at the children’s hospital – the nurse actually told me to, in an attempt to figure out how much it would cost, so this wasn’t just a case of overcurious grad student. Among other things, it will test for cancer. Again. I really cannot count how many times I’ve been tested for cancer. I had to punch down that bubble of “freakout!!” that rose up blaring from inside me, but I’m practiced at it now, like a baker punching down bread dough after the first rising. I’m also exhausted. I might actually worry otherwise, so being completely limp from POTS, a cold, and fatigue really does have a silver lining.

Birthday Jubilation

Tomorrow will be my birthday.

I don’t write my birthday down on the calendar anymore. I put other people’s birthdays down on the calendar without hesitation. I even schedule reminders on my phone’s calendar, and it politely counts down the last 7 days until the celebration. Somehow, I can’t do the same with mine.

It’s not because I’m dreading growing another year older. It’s not because I think it will be a depressing day, full of regrets that I’ve lived so many years but have yet to fulfill my 4 year old self’s dream of climbing Mt. Kilimanjaro, or some such goal. It’s not because I think that birthdays are overblown affairs. Actually, I enjoy and celebrate birthdays with a zeal that borders on the absurd.

I don’t put my birthday on any of my calendars because some bit of me is afraid that if I put it down, I’m expecting it to happen. Somehow, it feels like if I do grab my sharpie and just scrawl it down on the blank white square I, who don’t believe in jinxes, will somehow jinx it. If it is another event on my phone then maybe, like any other event, it could get canceled. I don’t want to count on getting another year older, because in the topsy-turvy world of illness that I live in, getting another year older is far from guaranteed. Because I don’t know if my birthday really will happen, I don’t put it down.

Life is not guaranteed. The next day might not happen for any of us. It’s not quite like the sunny commercials with the song “Tomorrow” from Annie playing. I love tomorrow.  It just that, unlike Annie, I don’t always feel “it’s only a day away.” Somehow my friends seem to traipse through their days, knowing that life could end quickly but seemingly only rarely feeling the gut punch of it. But even though I walk the same halls that they do, go to the same library and grocery store, and watch the same television commercials, that’s not my life. You see, I have chronic and largely invisible illnesses.

Most of what I have isn’t the sort of thing that kills you, at least not directly. I have POTS – postural orthostatic tachycardia syndrome. My body doesn’t automatically adjust for the change from lying down to sitting to standing. There’s good days and then there are floor days. Will it kill me? Not directly, not unless I happen to pass out somewhere dangerous.  I also have chronic pain conditions, and while fibromylagia and/or myofascial pain syndrome and neuralgia won’t kill you, they occasionally made me wish for it. Like many chronically ill patients, I’m still waiting and fighting for other diagnoses that might be years in coming — answers to questions about an undifferentiated autoimmune condition and random bouts of anaphylaxis. Both of those have the potential to kill me, either slowly or quickly. Even if we don’t have the diagnosis down yet on paper, it’s serious enough so that my doctors have already started treatment.

My doctors are not good about talking about the emotional impact of these conditions. Once or twice, immediately after I was diagnosed with one condition or another, I was handed sheaves of paper as I blundered out the door. Somewhere on the back of the generic printout would be a similarly generic, bland paragraph about support groups and depression.

No one told me that I would find myself staring at an unmarked day on the calendar and wondering what was wrong with me. Why couldn’t I just mark it off in the cheerful, sunshiny color I used for every other fun event, and move on?

Eventually, I did move on. I just put the pen down, walked off, and began the next thing. I proceeded to live my life, my new and strange life with chronic illness. It is not the Annie living that I do, where everything is only a day away. There’s usually plenty of everything in the current day, and I try to make it be good, too. I don’t use the YOLO philosophy anymore either, which often seems to be the excuse for doing things like having a pizza-eating contest or doing parkour on the third story of a building (I will neither confirm nor deny my past participation in such actions.) Instead I try to live knowing that even if I don’t know if I’ll be alive tomorrow, there’s no way I know right now that I won’t. I want to live life beautifully, honorably, uprightly. I want to live passionately and fully. I want to live so that my legacy is good, not bad.

I still can’t bring myself to mark the day on the calendar. Obviously, though, I know when it is. I recite the date every few days to someone in the medical profession, after all. I’m looking forward to spending the day with friends and family, whether that’s in person or virtually. I just want to live every day like it’s a celebration and appreciation of life, in some small way now.

Tomorrow is a blank day, full of the possibility for everything. Everything. Anything.

Confessions of a (chronically ill) graduate student

I confess. I occasionally get irked at friends who are trying out new diets. “Shred 10 is great!” one recently gushed. “I love it and I’ve done it several times!” “Nah, Ketogenic is the way to go,” someone else insisted.

For them, diets are pulled on enthusiastically and then discarded quickly, like summer camp t-shirts. They try to get me to come along to camp, and don’t understand why I don’t get on board, start singing “The Wheels on the Bus” and pull on a sparkly t-shirt too. But for me, well, diet is less summer camp and more a career in the Navy SEALS. Reading ingredient labels is life.

So I politely decline to join them on the trendy new diet. I secretly hope that these sorts of voluntary restrictions don’t adversely affect people who really have to avoid certain foods. And then I smile, and I tell them where I go to shop… because friends are friends, and people should be able to chose what they eat without excessive judgement, and SEALS do occasionally help summer campers.

Eating on Vacation, part 2

20170623_140937

Victory came in the form of a golden brown oblong. Bread. Real bread.

Tests results and a trial elimination diet showed that gluten wasn’t my problem. However, milk and eggs provoked all kinds of symptoms. I was told that food intolerances could wax and wane. I also found out that dairy and uncoooked egg whites could be triggers for histamine release. We decided it would be best for me to avoid dairy and eggs for several more months. The only bread I could find quickly while I was at school was Energ-G’s line of allergy-friendly breads. Tapioca bread quickly became a favorite, especially toasted with almond butter.

Problem: on vacation, there wasn’t any Ener-G bread in any of the grocery stores in my rather more country hometown.

In flew my mom in a super-hero apron cape dusted with flour. She whipped up a batch of French bread without eggs or milk.

The recipe below calls for 1 tablespoon of butter. But you can substitute in a safe oil/ fat. We did one a version with olive oil and double the whole wheat. It was a little denser and more chewy than your typical French bread, but very tasty.  It bakes at a high temp and we also tried a version with all the butter, and thankfully it didn’t seem to trigger anything. This site has a lot of substitutions for baking that I’ve used before: https://delishably.com/dairy/Substitutes-for-Butter-in-Baking.

FRENCH BREAD

2 packages active dry yeast

2 1/2 cups warm water (105°-115° F)

1 tablespoon salt

1 tablespoon butter or margarine, melted*

7 cups all-purpose flour

2 tablespoons cornmeal

1 egg white and 1 tablespoon cold water, for egg wash*

Instructions: Dissolve yeast in warm water in warmed mixing bowl. Add salt, butter substitute, and flour. Attach bowl and dough hook to mixer, and mix/ knead on medium-low speed for about 3 minutes. Dough will be sticky.

Place dough in a greased bowl (olive oil or a non-dairy substitute like Earth-Balance is cool, just so it doesn’t stick). Turn to grease top. Cover. Let rise in a warm place, free from drafts, about 1 hour and/or until doubled in bulk.

Punch dough down and divide in half. Roll each half into a 12×15 inch rectangle. Roll dough tightly from longest side, tapering ends if you want. Place loaves on greased baking sheet that have been dusted with cornmeal (ditto greasing with a dairy substitute. I’m not allergic to corn but I imagine if it’s not a good idea for you but a slightly crunchy, gritty base is still desired, Cream of Rice cereal could work. We’ve run out of cornmeal and the bread came off the sheets just fine without anything but “butter.”)

Cover bread. Let rise in warm place with no drafts until doubled in bulk (about 1 hour).

With sharp knife, make 3-4 diagonal cuts on top of each loaf.

Bake at 450° F for 25-30 minutes. Remove from oven. If doing egg wash – which we skipped – beat egg white and water together with form and brush over top of each loaf; bake for 5 minutes longer. Bread will make a nice hollow knocking sound when done.

Remove from baking sheets and cool on wire racks.

Should yield ~ 30 slices, give or take.