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TRANSCRIPT BELOW THE FOLD
Invisibly Ill: An Awareness Plea
“You’re one of the stable patients,” they said
As they kicked her to a dingy corner of the hospital.
With the other “stable” patients.
No space. No privacy.
No dignity.
But hey, at least she wasn’t dying.
She waited months for a specialist appointment.
Because she was stable.
Couldn’t work. Couldn’t read. Couldn’t eat if not for the tube in her side.
Couldn’t lift her head.
But she didn’t look sick.
If you ignored the puffy lines on her face
The way she always looked for a place to sit
The look of defeat in her eyes.
But hey, at least she wasn’t dying.
But what, may I ask, is dying?
Because I don’t think this is living.
Laying in bed.
Staring at the TV, but not really watching.
Sorting pills.
Scrolling through tumblr and twitter
Just to know there are others like me.
Making plans
I can never seem to keep.
I’m not living. And what is the opposite of living? [Read more…]
The Day I Gave Up…and Why I’m Not Going to Again
So I saw this meme on social media today….
…and I jut laughed. Nope. Nopity nope nope nope. Because a a little while ago, I unabashedly gave up. And I thought I’d share the experience with you. [Read more…]
Feeding Tube Vlogs #3: Getting the Tube Implanted
Surviving the Tilt Table Test
Oy. This one was rough.
Good news, though, this test is really only rough if you actually have the condition. Should a healthy person take this test, it’d most likely be pretty mundane.
Unfortunately, unlike the CT scan, I don’t really have any tips. I just thought I’d give you a run down of what the test was like, sans medical talk, so you can know what to expect going in.
The only prep instructions they’ll give you are to fast for six hours before (that includes stopping J-Tube feeds, too, apparently) and to make sure you have a ride home, because you will feel a bit wonky afterwards.
The first part is your basic outpatient prep stuff. Here’s your hospital gown that is designed for a 300 lb man, have fun trying to cover yourself in this 30 degree room.
11 Signs You’re a Spoonie
You know you’re a spoonie when…
…It’s three in the afternoon and you feel like you’ve been running around like crazy all day but when you look back on the day you realize you’ve actually done nothing.
…You’ve been on hold for 30 minutes and you really don’t want to lose your place in queue, but you’ve got three days of laxatives and a week worth of crap ready to come out…now…so you sigh and hang up.
Feeding Tube Vlog #2: Deciding to Get the Tube
Mobility
(Adapted from “When is it time to upgrade?” by Tumblr user imzadde*)
Depending on the condition(s) you’re dealing with, you may find yourself in need of a mobility aid. This is a big step from an emotional standpoint, as it requires admitting to yourself that you need help. It may also be difficult to go out with a visible medical device. However, a lot of spoonies say that they’re glad to have their mobility device—both for what it does for them, and for how it works as a signal to others that they have special needs.
Since we’re young and not expected to end up with mobility devices, it can be hard to determine when it’s time to start using one. There isn’t a simple answer to this question. It really depends on your needs and comfort levels, and it’s an entirely personal choice; that is, if you feel like it’ll be useful to you, don’t let anyone tell you otherwise.
Coping Strategies & Online Communities
A lot of people appreciate their sick days, taking the time to pamper themselves and binge-watch television while they get over their cold. When you’re taking sick days or rest breaks on the regular, though, the normal sick day activities get old very quickly. Plus, you’re probably dealing with something a little more intense than a case of the sniffles.
With that being said, it’s incredibly important to pay attention to what you do with your time. You’ll want to pick activities that match your various energy levels while entertaining you, distracting you from your symptoms, making you feel productive, or any other need you have at the time.
Mental Health
Chronic illness is BIG—really big—and as such, can wreak some serious havoc on your mental health. A good attitude certainly isn’t going to cure you, but it’ll help you stay engaged with your life and treatment, and make everything a lot easier. So, as you work on physical health problems, be sure to take some time to tend to your feelings as well.
If you’re sick enough to have sought out this guide, please start by looking into your options for counseling. A lot of people assume that counseling is for people with diagnosed mental conditions, but that’s not true—it can be helpful to anyone who needs to think something over or process something that’s going on in their life. Setting up regular appointments with a counselor (at least for a bit) can be very helpful; it forces you to “check in” with yourself at regular intervals, and gives you a space where you can focus on problem-solving of a more personal and internal nature. [Read more…]