I’m confident if people were able to feel the fatigue that I feel they would probably start crying immediately. It’s very hard to describe. It’s not painful, but it can be just as intense. My best description is it feels like every cell in your body is starving for energy and no matter what you do, those cells are always hungry.
I’ve had years to slowly acclimate to my constant misery. I’ve gotten to the point where I can actually tune it out and even ignore it for long stretches of time. But I’m pretty sure if someone felt it suddenly they would probably freak the heck out.
Sometimes I wish my superpower was making people feel what I feel for a brief amount of time. I’d be called Captain Fatigue and my power would be called Fatigue-o-kinesis. Or maybe it would be more like a supernatural 80s horror flick. The movie would star a young Drew Barrymore and she would go around making people feel suddenly exhausted with her mind. If they remained skeptical then she would set them on fire.
“This feels horrible, but I just don’t find the research on CFS very compelling…
…OH GOD WHYYY!!!”
For many years I’ve dealt with people not understanding the true nature of how tired I am. They might tell me it’s all in my head. Which is a classic. They say I could get out of bed if I really really tried. They cannot imagine a level of exhaustion in which they could not get up. They just know when they are tired, they can move if they really need to. Yes, I can get up to go to the bathroom. Yes, I can go to the kitchen and microwave some food. I’m not paralyzed. But that doesn’t mean I can get out of bed for any meaningful length of time. This concept just does not compute for them. So they figure they can just trick me into getting up. Mind over matter!
They’ll try guilt. “We really missed you at Christmas this year.” They’ll try enthusiastic motivation. “C’mon, you can get out of bed. I believe in you!” Eventually they start yelling at me like a personal trainer trying to coax 5 more sit-ups out of a client. Then comes bribery. “If you get out of bed we can go see that movie. My treat!” Then comes the unhelpful suggestions. “Maybe you just need to lose weight. Have you tried that ketogenic stuff? It’s all the rage on reddit.” Because if you’re fat that is the cause of all your health problems. Even some doctors believe this. I explain that I’ve lost a ton of weight in the past and it didn’t help. I tell them fad diets are unsustainable and cause a yo-yo effect which can be more unhealthy. So they start suggesting exercise routines because exercise can “energize” you. “I read an article about endorphins!” I say that exercise makes me more tired. “Even low impact?” Even low impact. Then they reject your diagnosis and blame it all on depression. Which means we’ve come full circle to “It’s all in your head.” Like Captain Kirk, they refuse to believe in the no-win scenario. “You just need to cheer up!” Which never gets annoying. I especially love it when they force you to smile. “Smiling has been proven to help depression. It was in a study done by real psychologists!”
The worst is when they try to compare their experiences to yours. They say, “I get tired too and I still have a job and a life.” It doesn’t occur to them that my tired is vastly different from any tiredness they’ve ever experienced. They are convinced if they had my illness, they could power through and overcome.
Despite my monumental efforts to get better, they feel I have not done enough.
Despite over a decade of stimulants, sleeping pills, two dozen antidepressants, experimental treatments, new and improved stimulants, injections, CPAP machines, shock therapy, talk therapy, physical therapy, specialists, more specialists, painful nose and throat surgery, blood tests, cat scans, osteopathic snake oil, vitamins, supplements, IV solutions, exercise, diets, more diets, more shock therapy, and on and on and on… clearly I’m not better because I’m just super lazy.
I didn’t try ALL the things or I would be better. My lack of willpower isn’t a symptom of fatigue and depression, it is a character flaw. If I’m laying in bed watching movies, I’m not trying. If I am not constantly subjecting myself to new pills, new treatments, new procedures… that means I’ve given up.
“Are you sure you even want to get better?”
Yes, I am purposely never leaving the house, never seeing my friends, never dating, never enjoying a meal at a restaurant, never, never, never… all because I want an easy life laying around all day.
I exaggerate my illness for leisure’s sake. When people aren’t looking I practice my breakdancing moves.
I’ve actually had people say they were jealous of me. “I wish I could lay in bed all day and watch movies.” Which is probably the ultimate insult for someone in my circumstance. My life seems like some kind of vacation to them. I represent the human embodiment of Netflix & Chill. (The non-sexy version where you fall asleep halfway through Game of Thrones.)
They don’t know how much I wish for a busy, hectic life. They don’t know about the games I play in my imagination. I think about what I would sacrifice to be in the world again. An arm? A leg? Two legs? 50 IQ points? The internet? Love? Cheez-its? My luscious beard?
I look ridiculous without a beard. In my 20s there was a tragic incident with a beard trimmer. I could not fix the damage and had to shave my entire beard off. It just looked so wrong. I don’t have any photos from that dark, hairless time, but to give you an idea of how weird it looked, here is Tom Selleck without a mustache.
I mean, who even is that guy on the right?
After I shaved my beard, I discovered the horror show that was hiding underneath my reddish face curls. I had developed several new chins I was unaware of. There was acne I did not know existed. I would reach for beard snacks and find nothing. Where does food go if you do not have a beard to catch it? I’m just very attached to my beard… physically and emotionally. It has even been immortalized in a meme. Sad Bear Guy would be nothing without his beard.
And I would give it all up to be healthy again. I would go clean shaven for the rest of my life if it meant having energy.
Another game I would play is imagining what job I would be willing to do for perfect health. I would give up my dreams of being a comedian and work the worst 9 to 5 job I can think of.
Would I be willing to do hard labor? Maybe break rocks under the scorching sun. Perhaps a sewer inspector? I saw a video of a guy that went around sewers and broke up these 11 ton clumps made of flushed wet wipes. They call them “fatbergs.” The wet wipe packaging might claim they are flushable, but they are disgusting liars. Could I be that guy in the sewer de-clumping fatbergs in exchange for normal energy?
[image not safe for life]
Or maybe I could be a doctor. Not the fun kind that treats the sniffles or travels through time and space. I’d be that doctor the ER calls when someone misplaces a Buzz Lightyear up their rectum.
“Is this what lies beyond infinity?”
These are all important, admirable jobs… but not exactly the career path I was seeking before I was ill. It would be hard to give up my ambitions, but I’d probably hop in a sewer full of fatbergs for a clean bill of health.
And yet, some people still think I am choosing this life in bed.
Fatigue-o-kinesis. That’s all I want. If I could just transfer how I felt for 5 minutes they would all understand. They would finally shut their ignorant faceholes.
Mooncustafer 