Killjoys, Make Some Noise
Welcome friends, family, gamers, bloggers, internet neighbors and benevolent passersby to my house of existential horrors!!!
(Thu Sep 22, 22) … I’ve had an itch to blog for some time now, but I hesitated to start for a number of reasons… not least among them self-preservation. I'm no stranger to being bullied and heckled, and putting something raw and vulnerable online makes you a bigger target than, perhaps, simply not doing that.
That, and the way I've chosen to use my words online, in the past, has been... unpleasant at best. Definitely unhelpful. I'm not at all offended by the idea that someone might decline to hear me out because of that. It's perfectly understandable. I've taken a bit of a hiatus from writing and sharing too much in recent years becuase I wanted to pull back and really think about how I wanted to use and choose my words, and what I wanted to say.
Likewise, my brain is not what it used to be. Finding words is difficult; I am plagued by brain fog and poor memory, reaching for words is often a long stretch, and I tend to talk in circles, forgetting the points I’ve already made, even upon re-reading. (Also lol at the version of me who was going to be an English major. What the hell is this? I can’t even read this shit. “Reed receipts”? UGH.)
Anyway, there’s some pretty solid reasons why I’m afraid that I won’t be able to express myself clearly; or worse, that maybe I will finally find the words and express myself just how I need to, but it will be overlooked because of the reputation I've built for myself.
tl;dr i'm not so much of a great writer anymore and im not sure how much i have to say is worthwhile.
I mean… Oh well, right? I gotta try. can't bottle that shit up. And writing helps to get stuff off my chest even if I don't get my point across well.
Then there’s the one last big hurdle: I have to talk about my health rather a lot. And the things I have to say about my health are rather unpleasant, and I admit it’s not fun to listen to. It’s certainly not the kind of thing loved ones want to hear when they call for updates. They want to hear that you’re doing well, that good things are happening, that you’re able to come hang out.
Let me tell you what, it’s not fun to live with these things I talk about, either… but if you can manage to listen, it helps to carry the weight. When you bear witness, you help share the burden. Maybe this won't even touch the people closest to me, but rather, people who are very far away and fighting the same fights. Maybe someday when they finally start taking MALS and POTS seriously it will help the research. I don't know who it's for besides myself primarily, and because it's for me, it's real and fairly uncensored.
I do joke and jest sometimes, and I try to find a way to tell these stories that isn't quite as hard to listen to as it was to live through. Sometimes. There are times when things should make you uncomfortable, but I try to lessen the fatigue for myself as much as anyone else. That said, I make no guarantees:
ye who enter here, be prepared for shit to get kinda serious.
I know that following along with what I’m saying is not always easy, for both of the reasons I’ve listed and more. If you decide to try nonetheless, I humbly appreciate it. It’s a kind and patient thing to take so much time out of your day to listen to my sad, meandering riddles.
— moving onto the sad riddles. —
The short version is I got what I think was swine flu in 2010, and I simply haven't been the same since. It seems I was prediposed to POTS, a type of dysautonomia, that was acutely worsened by my 4-month flu. Then, after a couple years of battling with new and much worse symptoms than I was ever used to, the MALS began to act up as well- though I wouldn't know that's what it was called for almost 10 more years.
My symptoms are varied and complex, and it's hard for me to do anything that requires being upright. I found out from wearing a fitbit that, when I'm driving- a task I'm very good at, confident in, and something that I actually enjoy doing and that often calms me down- my heart rate never falls below 100. Nor while I'm cooking, cleaning, working at a desk, or anything else that, again, requires being upright. If I "push through," I black out.
I say this only to establish the basis of my little backstory here. My website is not a pity party, but rather, my own personal record of living with these conditions. Other such records have been immeasurably useful to me; maybe someday this will be useful to someone else as well.
Likewise I just want to chronicle my journey for my own sake. I do journal with a pen and paper IRL, but that's a different scope of record. Putting it online allows me to achive one other crucial possibility: to feel like I have folks in my corner. No, this is not your fight, but it helps for someone to merely bear witness. We share the weight, we learn from each other, we improve ourselves and our lives.
So if you read all that and you’re still sticking with me from the sidelines… thanks :heart emoji: it sure means a lot.
This has been the weather.
how to make lying in bed doing nothing sound interesting?
(Fri Nov 25, 2022)...This is, at least, my favorite time of year to be laid up. Dad watching football a few rooms away feels cozy, a bit similar to someone practicing an instrument nearby. I’m sleepy under too many blankets, never more thankful to be warm and dry than as snow and wind whirl in the cold outside. Windows shine gold in the gloom, warm points of light on a bruised-blue backdrop. It feels just how you’d imagine, being on the other side of one of those windows. Like you are a perfectly cooked loaf of bread in the oven.
So that’s nice, at least. You really do gotta hold onto those little things. Especially in winter.
I recently had an infected tooth & emergency extraction. Since my mouth had started to heal, I was eating really well. Suspiciously so. And I knew it had to end, that it was merely a fluke come to pass, but you can never know just when it will.
I started a new drug, a little pink pill called amitriptyline. Prescribed mostly for sleep, but partially, as well, in the hope that as a nerve pain reliever, it may help my MALS pain somewhat.
It seems like maybe it has— somewhat. But of course, it’s just a band-aid. Underneath the mask of pain management, the MALS marches on. Nerve damage continues unabated. Arteries weaken. Muscles constrict. Something is still wrong whether your nerves are turned on to see it or not. (If an artery collapses but I'm too fucked up to even notice, does it make a sound?)
Most days are… fine. Even on a good day it’s uncomfortable, it hurts, I have to be careful with each and every movement, and things take me four times as long as they should. But as long as I have weed and am able to stomach at least one meal, that’s a success in may book.
Then there are the bad days.
Yesterday was fine. Totally normal. Thanksgiving, even. I ate not one normal-sized meal, but two, all with a manageable amount of pain and only a small headache afterwards.
Today, from the first moment I entered consciousness, I was in excruciating pain. No food yet, no water, no pills, no stimuli whatsoever. The first and only: pain, pain, pain.
It wraps around the abdomen. A thick, searing band of pain and tightness, and an odd sensation of coolness at the center, like the shock of metal when it first touches skin. Except it’s deep. So deep. It feels like I am made of paper and I’ve been folded in half, sharply, at the center. Hamburger-style. Crease smoothed down all the way. No matter how much I stretch and draw back my shoulders and arch my back and try to release that tension, it will not release. It feels like all my muscles are pulled tight around a center point, like a mouse trap set to spring. It feels like I am being pinched in half by razor thin cheese wire.
Today the pain is noticeably more severe, and has spread to the muscles all around my abdomen, making them feel sensitive and weak. They shiver and convulse at random. It feels just like I’ve already spent hours throwing up, though I haven’t yet, but the feeling is so strong, the pain so intense and nauseating, I wonder when— not if— I will start.
Instead of breakfast, I heat up a hot compress in the microwave. I fill up my water bottle, make sure my ER-issue barf bucket is handy, and I go back to bed.
Within just a few hours I am exhausted, depleted from the pain. I have done nothing all day but shake through it. Fatigue clouds my emotions and weighs my eyelids. There is one (1) comfortable position I can find when my stomach hurts like this: flat on my back, no pillow propping up my head, holding nothing (not a phone or a book) above me, as even that light compression of my abdomen makes it all worse. This is the kind of pain that makes your mind go blank when it hits. And all you can do is wait for the wave to pass, and the next to wash over you.
Any other position besides flat on my back is wildly uncomfortable. Even just sitting upright. My diaphragm itches all around and under my ribs, as if it’s inflamed. Breath comes short; I constantly have to remind myself to keep breathing. My head pounds, starved of oxygen in spite of the effort. Anytime I move, reach, bend or twist, my stomach howls, convulsing in emptiness and hunger pangs as much as in response to the pain. It throbs like an enormous wound, and all of my other muscles freeze up as the rogue wave of that pain reverberates around inside my body like a boomerang. Being hungry hurts. Having anything in my stomach hurts. Resting my hands on my abdomen hurts. I don’t know how to move my body. I don’t know how to get comfortable.
Living with this for so long has done things to my appetite. Most noticeably, it doesn’t usually exist. I have to force it into being with the use of cannabis. It does not come easily.
My MALS-restricted diet was further cut down by my recent tooth infection; already barely eating, I was now unable to chew. The place where my tooth once was has began to heal, but for three weeks, I starved.
It’s been three more, now, and somehow I have rediscovered my appetite, but no matter what I eat, my stomach hurts. And the more (and the denser, and the more nutrient-rich) the food, the more it hurts, and the more the headache afterwards rages.
I am incapable of eating until I’m sated. I eat like a baby bird, small portions every 2-3 hours, sometimes even more frequently. My entire day has to revolve around food and my meals. I can’t go anywhere, even to run simple errands, without emergency snacks.
I am still. Always. Hungry.
Even on my best, least-painful, goodest-eater days, I can’t make up for the weeks and months I will inevitably spend eating the bare minimum.
Today, the pain makes eating unthinkable. The mere thought of food makes my gorge rise. I know better than to try; last time I tried to “push through” this feeling, I would up having a screaming panic attack on the floor, and not eating the food that caused it, anyway.
So. Here I am. Unable to sate my hunger. Unable to function otherwise on this lack of calories. Unable to sit upright. Too tired to focus on games or TV, let alone a book— but even if I could, holding my phone up in front of my face means resting my arms, however slightly, on my abdomen, and even that hurts.
I am trapped here, lying flat in bed, too tired and weak and painful to do anything, floating between states of consciousness and fatigue and boredom.
If I can manage to play a game for a while, I try not to feel too badly about it. No amount of wanting it gives me the option of playing outside instead.
time spent recovering is never wasted.
. Remember it. Remember
Tell yourself every time this happens, this entire "wasted" day of rest.
It’s not a waste of time.
Tell yourself even though it was your 21st birthday and you always thought it would be different, you're not sure how, but you didn't think you'd just go home from work and pass out... but that's okay. You obviously really needed the rest.
Tell yourself even when it was your only day off, and other things really needed doing, but all you could do was sleep. And you tell yourself when it wasn't your day off but you had to call in. Again. And then again.
Keep telling yourself.
When it starts happening once a month, keep telling yourself.
Now once a week.
Keep telling yourself.
You need rest to live. Everyone needs rest.
Keep telling yourself.
Even as you lose not the first, nor second, but third job in a row.
Even as rent looms on the horizon and nothing is budging and you're spending more time in the ER than at the job interviews you can't get to anymore.
You know you need rest to live.
You can't afford it any more than the groceries you've stopped buying. And yet.
You keep telling yourself that all this time hasn't been wasted.
That you haven't wasted your youth.
Before you know it, 10 years has gone by. Now, you spend more time abed than anywhere else; a good day is a rare treat to take advantage of, not simply par for the course of your age. That Animal Crossing island you’ve built is as real and tangible and important as any relationship IRL. You feel like you spend more time playing games and daydreaming than on your real, waking life, and at this point, you’re scared to quantify it.
Your virtual lives are works of art in a different medium, you tell yourself. Along with "recovering isn't doing nothing" and all of that. And you know it’s true. But it bears repeating because no matter how many times you tell yourself, you still find yourself here: You grip the sink to steady yourself. You grit your teeth when you look in the mirror and you keep. telling yourself.
It’s not a waste.
You are not a waste.
You are not a waste.
This is important, I tell myself. It’s not just that “I can’t do a single damn thing with my body today.” It’s important that I rest; resting, too, is doing a thing. That, too, is a type of work, though on a cellular level we can barely comprehend, but nonetheless… We don’t “waste” a third of our lives sleeping even at the best of times.
Our dreams are as much a real part of our lives as breakfast.
(Keep telling yourself this. Never forget this. I don’t mean it ironically; it’s true. But it is hard to accept, I know.)
(Keep telling yourself.)
There are days— more with every year that passes— where even that is too much. Where even the smallest movement is nauseating agony, where visuals are dizzying, and every sound is like a knife to the ears. Days where my phone is somehow too heavy to hold, where focusing on something is beyond me, days where I am so fatigued I feel I’m lost in an endless fog, stripped bare of anything that once made me real and individual.
These are days spent drifting somewhere between the dream world and this other one, too tired to be able to tell the difference anymore. Too exhausted to focus on the real world; too sick of fucking resting to fully lose myself in the dream.
Too many days to count.
No amount of body positivity and crip pride and healthy coping skills can make those days easier to pass. Nothing I’ve yet found eases that itchy feeling under the soul that, I’m only 30, I “should be” moving, should be doing something else on those days. I should be somewhere. I should be someone. I’m supposed to be doing… Anything else but fucking laying here. I don’t know what it is. Bettering myself, somehow, doing my stupid little DuoLingo lessons or still making art from bed, or whatever. Finding some way to be plugged in and Learning or Doing or Creating despite the fact that I’m flat on my ass and reading too fast makes my head hurt and my arms aren’t listening.
It’s hard, even for me, not to think of these days as “wasted” nonetheless.
Can I synthesize this into something… useful and poignant? Somehow?
I don’t know. These days leave me with the same sorts of questions you might have after hearing about them: How do I suffer it? How do I keep doing that, indefinitely, forever? I don’t know, I don't know. It’s been 10 years and I still am no closer to understanding.
But I wonder this, too:
What will I say to my friends and family when they, inevitably, start asking the same questions?
I got a head start on aging— not just ahead of my peers, but my parents as well. The specifics of my condition may be mine alone, but the general concept of “guy can’t do things he once used to do, is in pain all the time, no longer knows what foods will nuke his guts, etc” is, effectively, a near-universal experience for any organism that survives long enough.
Maybe there are no answers. Maybe these are merely evergreen rhetorical exercises. A sad riddle with no one answer, but rather, many potential ones.
Because even if you remove the cultural context and the feelings of uselessness and stagnation, of capitalism and the hustle and grind culture. Even if the world were perfectly accepting of disability and of taking time to rest and heal; even then, on these days, you are still left with these bitter, uncompromising facts:
I am bored.
I am lonely.
I am stuck in here while my peers live life without me.
Reaching life milestones, and finishing school, and meeting people, and finding work they can take pride in, and developing their skills, and seeing the world, and having new experiences, and settling down and having kids.
I don't get to do anything, or be any of the things, that I had planned. I don't even get my own space, one small little corner of this vast world to call my own. I live with my parents. (The answer to the question, "How do you survive once you can't work?" You hope and pray that someone keeps loving you. That's how.)
Sure, if you could remove the wider context of ableism that would be great. I’d love it if people quit thinking I was choosing to live like this. I would hope my tone makes it evident that absolutely nothing about this is benficial to me, and there are thousands of better and more effective ways to get "attention," which I, frankly, avoid aggressively, even in my own home.
But even so.
How do you cope with watching your friends, your peers, growing up and moving on without you?
How do you cope with therapies like CBT that teach you that your body is safe, when it’s patently not safe for you? When it’s your body that’s traumatizing you?
These are questions I’m still trying to answer. They’re percolating in here. But I DO think there are answers. Probably many, that's the thing. I think so many of us prefer one concise, “correct” answer for things, but the reality of, indeed, MOST things— especially people— is far more complex than that.
We are far more than just one thing.
Why would the questions & answers that guide us be so simple?
what is up w these divs am I right lads