Confessions of a Bubble Boy

I am bubble boy. I cannot breathe normal air. That's right. The air you're breathing right now would most likely make me very very sick. So, I live a bubblish kind of existence, but not a traditional kind of bubble. Do not get led astray by visions of Jake Gyllenhaal or plastic spherical shaped things. The bubbleness of my living is in concept only. I live in an apartment where all outside air sources are blocked off, and the inside air is medically purified. On top of that, everything in here is as clean as a sergeant's whistle on the first day of boot camp. I am what is known as "hypersensitive", thus, any tiny, little, minuscule thing in my environment is liable to set my body off into a cascade of uncomfortable, extremely painful, possibly life-threatening physical reactions. I could go a lot more in depth on all this, but then what would I put in my blog? Here's what I want you to leave with after reading this introduction: Yes, this situation is as horrific as it sounds. However this situation is also as ludicrous and hilarious as it is horrific. Something I've learned is, life is life. Einstein was not wrong. Everything is relative. In the end, if you join me on my journey for even a short time, you'll see, on a fundamental level, the challenges in my life are not that different from yours.

[confessionsofabubbleboy]

Healthcare? Yeah right. Try health UNcare.

Me: So…what’s wrong with me? Doc: Nothing. You are fine! Me: Then why am I in so much pain? Doc: I have no idea! Me: Aren’t you going to do any tests? Doc: What for? Me: Um, you’re the doctor. Doc: Without more to go on, there’s nothing I can do. Me: Won’t tests give you more to go on? Doc: I don’t know enough to know what to test you for. I see no evidence that you are actually in pain. Me: Me telling you with my words doesn’t count for anything? Doc: I’m afraid not. Me: Well, is there anything you can do to help? Doc: No. Sorry. But that’ll be $400 please.

My fellow Americans…how did we get here?

[confessionsofabubbleboy]

This is what my face looks like right now. First of all, this picture looks much worse than pics of me usually do, because my face looks much worse than usual. Second of all, this picture looks much better than I actually look in person. If you were here in person, then you could see that my eyes, which don’t look good here, actually look even more haggard and destroyed. If you were here in front of me, you could see that they look rather bruised, as if Mike Tyson had been up here in my pad mistaking my face for Robin Givens. Also, the tissues that make up my ocular spheres, yeah that’s fancyness for eyes, and sinuses and eyelids and such, are all totally swollen. For like a week now I’ve been feeling like those tissues have been all stung up by a horde of wasps. And then it doesn’t end there. No. It can’t end there, because that would be like maybe kind of tolerable. On top of that, my eyes have been gooing up a literal storm. Okay maybe not a literal storm, because it’s not like there have been raindrops of pus shooting out my eyes, but there have been floods of it oozing from my eyes, slowly, like lava oozes down the side of a volcano. And the worst part of that isn’t actually that it practically blinds me, but that it stings and burns something fierce. Yeah. My own body makes pus that stings and burns my own eyes. Isn’t that just special? And then, moving on from the eyes, it feels like that horde of wasps, after happily stinging away at my visual area, moved down and flew right into my mouth, down my throat, into my lungs and then resumed their happy stinging there. I’ve been wheezing like a 90-year-old man hiking up the last kilometer of Pike’s Peak. Last, but not least, and only because I’m covering the major symptoms, because covering the minor symptoms would probably take a novel, the headache. It’s actually a headache and sinus ache. The entire top row of my teeth have been numb long enough that I can’t remember what it feels like to feel them, and it has felt like knives in my temples for more days than I can really keep track of. At this point, I am both surprised and impressed that I have managed to stay alive. Even after 13 years, I still find it incredulous that my body manages to survive these intense bouts of pain and autoimmune reaction. But, survive it does! Now, as for what they do to my sanity, that’s an entirely different blog post.

[confessionsofabubbleboy]

Star Trek, Save Me

A reality of Lyme disease is that sometimes you have bouts of intense pain and nothing can be done to mitigate it. This is not to say that those of us who have Lyme don’t try to mitigate it. Don’t misunderstand me. We try. Oooooh do we try. Sometimes, some of the things we try work. Other times, nothing will even make a dent. Not turmeric, not NSAIDs, not OxyContin, not sleep, not massage, not herbs, not food, not throwing up, not fresh air, not a respirator, not pleading to the good Lord for mercy…nothing.

In these times we Lymies dip into our generously supplied treasure chest of coping mechanisms. Personally, my most loved and worn coping tool is distraction. There’s nothing like a good TV show to make me forget that I want to die. Today I have a sinus infection and a headache that is making me want to saw through my neck and remove my head. Luckily, for me, there exists the ameliorating affect of Star Trek Voyager. So far, I have managed to spend two would-be excruciating hours blasting my way through open space, getting whisked away to the other side of the galaxy by a grief stricken super-being, exploring a nebula that was actually a gigantic alien, and pursuing morally corrupt frankensteins who stole one of my crew member’s lungs.Thank you for Star Trek. Thank you.

[confessionsofabubbleboy]

On Surviving Advanced Lyme Disease…

Lyme has caused in me an evolution in my relationship to death, namely, to my own death. At first, I was unnaturally concerned with my own impending death, considering I was very young, only in my early 20s. I knew something was very wrong and it seemed an early, inexplicable death was not out of the realm of possibility, and this incurred in me a feeling of terror. Eventually, after many years, during which I struggled intensely to survive, and experienced ongoing bouts of interminable pain, my attitude toward my own death became cavalier. “If it is, then it must be, and so be it,” that sort of thought. Now, having been stripped of almost all earthly freedoms, having been reduced to very little more than my mind, and made to endure soul crushing agony for which there is no recourse, my attitude toward death has become one of quiet longing. I say quiet because it in no way manifests as a desire to take my own life, rather, it is a yearning for rest, for the peace I know will eventually come to me as it naturally comes to all.

Yesterday, my nose began its faucet impersonation, where a torrent of very thin liquid is released in an unending onslaught of viscous drainage down my face, and can be indicative of a problem with cerebrospinal fluid, in that what was streaming uncontrollably from my nose could have been cerebrospinal fluid. The thought that maybe I was in danger lackadaisically puttered its way through my mind, but ultimately failed to make any significant purchase of my own concern. I lay here in my bed, eyes watering from extreme sinus pain, tissues stuffed up both nostrils, and thought to myself, “Is it time? Are you going to give out now, dear body?” And the thought did not feel terrifying. It felt only sweet.

This is how tired I am.

[confessionsofabubbleboy]

Life as Fractal

I’ve been stuck in my living room for about two years now. I’ve been able to leave maybe three or four times in the last two years. You’d think I’d have seen everything there is to see in here, yet every day I notice brand-new beautiful things. Things I have never seen before. That says a lot about this world and this life. That I can be in a single room, with almost no change in my environment as far as material items go, new food comes in, then gets eaten, and that’s pretty much the only rotation of physical items that happens in this room; everything else in here has been here since we moved in, or shortly thereafter, yet, I am continually surprised by new things. It’s not that the things I see weren’t here before exactly, but more that there is just that much in the world to notice. What strikes me most about this experience is how often I notice the beauty of something that for the previous 30 years passed by me unnoticed. For example, I was just cleaning oil out of a pan I cooked sausage in yesterday. What on earth could be beautiful about that? Well, I’ll tell you. I put water in the pan and put it on the stove because that loosens the oil from the pan and gets most of it off, making the pan much easier to scrub clean with a sponge afterwards. When the water began to simmer, I looked over and to my surprise I noticed absolutely beautiful abstract patterns made by the oil, the charred bits of leftover meat, the bubbles, and the water. I know, to hear me describe it, it does not sound at all beautiful, but I sure you it was. And this is part of the essence of our reality. That nature can make beauty out of every day things like oil and charred bits of meat. It’s really something. It doesn’t matter how big or small your life is…at any point, it’s potential depth is unending.

[confessionsofabubbleboy]

The Real Slim Shady...Please Stand Up.

My mind is always going going going! That’s not true.There are the foggy days. On those days it doesn’t so much go as it does stew and sag in a kind of imbecilic suspension. But even then, underneath that, I feel a burgeoning of something trapped, a forceful pushing against the stuporous membrane maliciously wrapped around my mind. Even on those days, I know the real me, the go go go, is waiting, and not at all patiently, to be set free.

You see, our sickness is not part of the real us. It’s like a blanket so heavy you can’t crawl out from under it.

[confessionsofabubbleboy]

Massage-Adi-Like-A-Boss-While-Spooning-Moves

You probably don’t know this because I just got here and you just got here, but Becky is my girlfriend. She’s more than that though. She’s my forever. I know. I found my forever. How bitchin’ is that? Anyway…

Becky has natural massage talents. She never studied massage or anything, but, as long as she can manage counterbalance her ADD mind-tendencies with a little focus, (ok, ok, a LOT of focus), her massage skills border on physical brilliance. One of the things that makes her inherently good at it is how creative she gets. For instance, often, when I lay down to cuddle with her, I complain of pains. I can’t help it. The pains are there all the time, but when I’m up and about and doing things, I don’t notice them. However, there is nothing like laying down to rest to really REALLY highlight just how much pain you are in. Well, Becky loves me and feels bad about all my pain, and she knows that the only thing that gives me a break from it is some massage. Unfortunately, the girl is tired. She works non-stop at about 100,000 miles a minute for about 25.3 hours a day so she can do a good job teaching the children of our nation. She doesn’t have much left after that to massage me. Well, she’s so creative that one night, as I spooned her, she began to use both her feet to massage the calf muscle of my left leg. She used one foot to keep my leg steady and give a counter-force to the action of the other foot, which was kneading my calf muscle with the top of her foot and toes. Now, feet are much stronger than hands, so when she does this move, with very little effort she manages to really get in there and give my tissues a deep, healing massage. It’s brilliant. She has more massage-Adi-like-a-boss-while-spooning moves, but they are complicated to explain and I think you get the gist. Well, tonight she was doing the calf-move-of-spooning and for some reason, it felt better than any other massage of my lifetime. So good in fact, I apparently felt the need to blather all about it.

“Oooooh. Oh. Oh yeah. Mmmmmmm. Baberz….this feels so good. Little explosions of pleasure are happening in my brain. Heavenly. This is heavenly. No it’s not. It’s heaven. This is what heaven is. When I die, this is going to be what my heaven is like. I will die and then float up into the clouds and there will be a bed and a woman who massages my calf with her foot for the rest of my life. Except I’ll be dead, so that’s wrong. For the rest of my death then. Yeah. For the rest of my death, which I’m pretty sure is way longer than my life. Right before I’m about to die, will you do this move on me? Because then, instead of being afraid of death, I’ll be super excited for it.

…………………………..

Baberz?

But she didn’t answer because she had fallen asleep…but she was still massaging my leg with her feet! Now that’s talent people.

[confessionsofabubbleboy]

Cost of Greed: Me

I am sick, so that is something that is always a part of my day. It’s not something I get to choose. It’s there and I have to deal with it. During good spells, however, it’s only part of my day. During good spells, just like you, I get to be a dynamic person, with a wide range of feelings, and experiences. I get to do a variety of different things, even if it’s limited to a single room.

Right now, however, I’m having a bad spell. It’s due to a mold exposure, caused by Becky going into a building with mold spores and then bringing them into our apartment on her body. During bad spells, there’s just sick. It’s not part of my day, it IS my day. All potential dynamism I could experience as an individual human being gets obfuscated by pain and severe physical suffering. The things that usually bring me joy? They don’t bring me joy during a bad spell. Joy is not possible during such extreme episodes of pain. What is possible is survival and distraction. If I am able to laugh out loud, actually physically laugh out loud, twice in a day during a bad spell…that is an amazing day.

Yesterday, all I could get out was, “I can’t do this anymore.” Today I can get out a bit more, not because I feel better, but because I’ve begun to adjust to the bad spell. I didn’t mean, “I give up,” when I said that. It wasn’t clear, I know, because clarity is hard won and often impossible to get at during a bad spell. What I meant was, “I feel the end coming, physically. I feel my body approaching a time when it will fail to be able to maintain its life.” What I meant was, “I feel myself dying.”

I was not expressing choice. I was expressing inevitability. One cannot stay sick forever. Eventually, a physical body will buckle under the assault of disease. This is common sense. We all know this to be true. This is what is happening to me. I am experiencing what seems to be an exponential rise in debilitation. Just like the greed-based industrial assault on our Earth is not sustainable, neither is this greedy pathogenic assault on my body.

There is treatment, but I cannot afford it, precisely because I cannot work, precisely because I am sick, precisely because I need treatment and cannot get it.

The cost of the greed of the 1% is VERY real. The cost of the greed of the 1%, eventually, if things do not change, will be my existence.

So, next time you are inclined to meet injustice with silence, please…speak up…lest I pay for your silence with my life.

[confessionsofabubbleboy]

My Tired. Your Tired. The Space Between.

No. We are not tired. We are bone-split and quark-sucked.

A healthy person gets tired. I get bone-splitting, quark-sucking fatigue.

Why do I say bone-splitting? Because I’m so tired it hurts. This is not a metaphor. There is actual, physical pain. The kind that disintegrates.

Why do I say quark sucking? Because I want you to understand the thoroughness, the depth, the minuteness of this enervation. It drains you down to the very detail of your molecules. It sucks life from the heart of your atomic structure. It steals the fuel of quantum level you. It takes what you have and then it keeps taking. Tired doesn’t cover it. Fatigue doesn’t cover it. Even this paragraph strains at the seams in its effort to cover it, and fails to cover it.

At this point, it becomes a linguistic problem. In order to communicate with language, a basis of shared experience is required. If you are healthy, that shared experience does not exist. I hope, at least, this serves to dispel the assumption that our energy deficiencies are anything like anything a healthy person has ever experienced or could even fathom.

I could talk about this on the scientific level, but I think that would just make you feel like you’re all of a sudden very hungry and leave for the fridge and never come back. So I’ll talk about it briefly in terms that don’t induce sudden onset of escapism. Tired means you need to go to sleep so your body can recuperate and then you feel all rested and better. Our kind of energy depletion would be better likened to a car with almost no gas. It’s not that we need to sleep so we can rest our brains. It’s that we are critically low on fuel. It’s that we are running on fumes. We are cars running on fumes with no gas station in sight.

When you see someone with a chronic illness like MCS, CFS, Lyme, Multiple Sclerosis, move their body, there is something happening there, and there is no way you could know about it unless someone like me tells you. When you see that person do something you do all the time, like lift their arm, what you’re seeing is a heroic effort. The effort it takes for us just to move our bodies is as heroic as it is silent, as tenacious as it is invisible, and is no less for your not seeing it. But it would have an indelible impact if you, a healthy person, said to that chronically ill person, “Wow. I am so impressed. I don’t know how you do it. You have the strength of a warrior.” You see, we do not know what it means to be seen.

[chronic-illness-cat]

from the amazing metallicinsides.tumblr.com

[picture of a cross-eyed Siamese cat’s head against a gyronny (a triangle-sectioned background) with six shades of blue. Top line of text reads: Strangers who think they are entitled to know why I’m using mobility aids: || Bottom line of text reads: Stop.]

[finallyhaunted]

People love to talk about whether or not disabled people can work

but if you can work just fine and your disability is destroying your ability to have a life outside of work (because work takes all your energy and more)

Dead silence. Nobody cares.

[eenymeenypia]

File this under, oh you can be active for 4 hours? You can work part-time. Um no, I have to get ready for work (30 min) get to work (15 min) get home from work (15 min) feed myself all day (30 min) maintain myself, my home and my life (15 min, yeah right), which leaves 15 min for work and absolutely nothing else.

[chameleonchild]

This is so accurate, back after I’d relapsed I wanted to try and go in for one class at school so I could still stay in contact with the education system. I let slip during a meeting that I managed to drag myself to that I could manage about 4 hours of activity a week, which the teacher sprang on to mean I was being lazy for just trying to get to 1 hour class. Never matter that it was 30 minutes travel, that I would have to get washed and dressed, that I would probably still need to recover for 3 days from it. 

Far too often abled people see the things they do easily as “non activities”, they don’t realise that for many disabled people these things have to be carefully planned and measured, and sometimes they simply can’t be done.

[finallyhaunted]

reblog bc the non activities thing seems really important words

[seananmcguire]

I get X number of pain-free steps per day right now, which means that, for large conventions (like SDCC), I need to be in a mobility device.  I had someone ask if I used up my steps every day before transferring to the scooter, and look surprised and a little horrified when I said “no, I save them so I can go to the bathroom unassisted.”  Like, they had never considered that walking is involved in peeing.

[finallyhaunted]

!

[confessionsofabubbleboy]

I don't get any steps a day without pain. The main thing I spend my energy on is breathing. Abled people are like, it tires you out to lie down? Yes, people. For some of us less than lucky humans, everything we have goes to just being awake and breathing. And if we have a moment where we can stand and do dishes for an hour one day, no, that does not mean we are suddenly A-OK and can get a 40 hour a week job and have three kids.

[passivites]

Ambivalenty Yours

[afatfox]

Repeat after me: the health of a stranger is none of my business.  It is not okay for me to comment on/assume another person’s health unless they explicitly state that they are seeking help/opinions for whatever reason.

[confessionsofabubbleboy]

In spite of multiple requests over 5 years to my landlords to not put anything on my door, they continue to. Latest thing...a flower attached to my door. Fucking POLLEN right on my door. I finally put a sign on my door since they had 5 years to figure out how to meet my request by communicating amongst themselves and could not manage it. They removed my sign. Without even telling me. I'm about to blow a fucking a fuse. I am also just so bone weary of ableism. So damn tired all the way down to the middle of my blood. Even simple thigs are a hard, stressful fight when you're differently abled.

[rdomnaii-deactivated20240903]

It just bothers me how a lot of people seem to view ‘Don’t touch me’ as a challenge and not a request

[it-is-ok-i-am-ok]

[kamdjdndknsssnsshs-deactivated2]

Shoutout to people who can’t stand loud noise because of anxiety or sensory issues or chronic migraines and have to deal with people being unnecessarily loud all the time but can’t do or say anything about it because that’s “rude” and “ruining everyone’s good time”