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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