Insufficient Storage

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Maybe I should write a story about sleeping one’s life away because of demands on it from my disease (need for napping was one of the first noticeable symptoms at 15), depression/antidepressant. and existing in a pandemic. Social interactions drain me more than before since my tolerance from 5 days a week is gone.

It could be nonfiction. Or fictional. A fairytale.

I tell myself “oh, it’s just the 4th vaccine this weekend” but honestly, I don’t feel it. My Humira wipes me out way more than these vaccinations.

And Jeff will often let me sleep, unless I have specific can’t miss plans. He knows I need the rest. I know I need the rest. But i just resent myself for needing so much rest.

This demand for sleep is a hidden cost of being immunocompromised, living with an incurable and disabling autoimmune disease.

Selfish people in this pandemic tell me and others like me to “just stay home” if we don’t want to catch Covid-19 and so that they can be selfish entitled assholes in a world designed for them and their entitlement.

But the thing is, I’ve always stayed home on my “time off” from work. And now I even stay home all the more, because work allows for it.

But it’s nice to leave the house once and again to pretend that I’m a normal person, who gets to do normal things.

They can’t stick us in asylums to forget about anymore.

I just keep sleeping the days away, hoping to wake up in a better world.

It hasn’t happened yet.

But maybe tomorrow….

Normal.

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I hate my disease. I hate having to be forced to give up so much time living with it, dealing with it,, treating it, pretending to be well when I’m not, especially in this ableist society.

I have my disease because an asymptomatic virus triggered something in my immune system to go haywire and turn upon itself as the enemy.

So now for almost 27 years from the promising age of 15, when you have your whole entire fucking life out ahead of you, I’ve had to fight and struggle against my own body, against the disease that too over as it has tried to destroy itself, Me, from the inside out. Then and now until the day I die.

But go on about how vaccines and masks are too much or too difficult or how they rob you of your “freedumbs”…

You want to know what robs you and your children of your so-called freedom?

A fucking virus that cares only to destroy from the inside out followed by a fucking disease that cares only to destroy from the inside out. And you fight an often losing battle trying to find the right treatment, trying to keep up with enough treatments to keep the autoimmune disease at bay. But just like a virus, autoimmune diseases are clever and find little ways to sneak through, forcing one to increase treatments or change treatments.

You want to complain about vaccine side effects? Look up the side effects for my fucking Humira and then get back to me. We aren’t doing flips and cartwheels afterwards like the commercials indicate. I’ve utilized this treatment since 2006 and one day, I know it will fail me. I’ve had to increase treatments to control my disease activity.

But go on and complain about how “you can still get Covid-19 if vaccinated.” Your immune system would have a fucking chance to fight it and protect your immune system’s health and future instead of being compromised to the point of triggering a destructive autoimmune disease, so get vaccinated.

It isn’t just imminent death and illness from the virus that you should fear but also the long term effects of surviving the virus.

Where’s your freedom when you’re seeing a specialist to find out why your body hurts and you can’t move easily, freely?


Where’s your freedom when you have to start treatments to control your immune system and hinder disease activity?


Where’s your freedom when you have to deal with prior authorization bullshit and insurance companies?

Where’s your freedom when you have to find copay assistance programs to afford your thousands of dollars treatment?


Where’s your freedom when you have to dedicate time to your treatment and its recovery?


Where’s your freedom when you’re too ill from side effects of treatment to do anything you want or anything that you had planned, forced to watch the world pass you by as you fight a battle against a disease trying so hard to destroy you from inside?


You want to complain about hating this “new normal” of the pandemic and quarantines?


Try the new normal of an incurable autoimmune disease and the new normal of a chronic disabling health condition.

Where’s your motherfucking freedom then?

Feel free to share. Maybe it will spare one child from losing their healthy immune system like I did at age 15..