Me, Every Second Of My Life: But Is It Meaningful? But Is It Meaningful? But Is It Meaningful?

me, every second of my life: but is it meaningful? but is it meaningful? but is it meaningful?

More Posts from Girlish-in-pain and Others

2 years ago

My chronic pain has gotten worse every winter for the past 4ish years. And not just a flare up that goes away again but permanently worse. And I don't know if it's simply a coincidence that it happens every winter but I'm so nervous and scared because it's getting cold again.


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3 years ago

Yet another reminder that faking is a conscious choice that you make.

It is not something you can do accidentally, regards of what you're talking about.

You can't accidentally fake depression, or anxiety, or bipolar disorder, or schizophrenia, or any other mental illness.

You can't accidentally fake Borderline Personality Disorder, Histrionic Personality Disorder, personality disorders.

You can't accidentally fake ADHD, autism, Tourette's Syndrome, auditory processing disorder, aphasia or any other neurodivergence

You can't accidentally fake being trans or ace-spec or aro-spec or any other LGBTQIA+ identity.

You can't accidentally fake chronic illnesses like CFS, fibromyalgia or any chronic illness.

You also can't accidentally fake being good/intelligent at something. You didn't fool your peers into reaching your position.

You can't accidentally fake trauma, PTSD/cPTSD, DID/OSDD/DDNOS or any other trauma-based disorder.

Tldr:

Faking is a conscious choice.

You cannot do it by accident.

If you are worried that you are faking, that in itself is proof that you are not.

3 years ago

Since it's fibro awareness month, I'd like to give a special shout out to all my fibro friends!

Here's to the people who were diagnosed when they were young, and had to sit out on everything other people their age could freely do

To my older fibro friends, who got diagnosed later in their life and were constantly told it's "all in your head"

To the people who have their diagnoses ignored or belittled

To the people who have no support and feel alone

To the people who have amazing friends, family, and doctors who actually listen

To the people who keep telling themselves, "I just have to make it through this day," every day

To those who lay on the floor with invisible pain, no one else can begin to imagine

To my friends who wildly swing from a 3 to a 10 on the pain scale

To everyone who feels like their skin is burning, just from wearing clothes

To my young and old friends who use mobility aids

To my friends who wear compression supports

To my friends who can't do basic tasks, such as showering, brushing your teeth, or eating because it feels like you've been set on fire

To anyone who hasn't gotten a diagnosis yet, but you just know something isn't right

To everyone who feels as if there is no end in sight

Since It's Fibro Awareness Month, I'd Like To Give A Special Shout Out To All My Fibro Friends!

May your pain never be a ten, may you have heating pads, a comfortable bed and a nice cup of tea to help you feel just a tiny bit better. I see you, I hear you, and I am with you through this hell of a journey.

1 year ago

I know this is for artists and writers, but it's also just really helpful if you're considering beginning to use a cane or researching which one to buy. It gives a really nice overview of the most common types of canes. I have used a cane for a little over 6 months now and I would have loved to see something like this, when I was trying to figure out which cane to buy and how to walk with it. I usually use the cane with my dominant hand and didn't even realise that I can obviously just switch hands so I have my dominant hand free for stuff😂 I ALSO HAD NO IDEA THAT YOU CAN BUY A TIP FOR ICE!?!?!! I'VE BEEN SLIPPING AND FALLING AROUND FOR MONTHS AND DIDN'T EVEN QUESTION IT😭😭

A general cane guide for writers and artists (from a cane user, writer, and artist!)

Disclaimer: Though I have been using a cane for 6 years, I am not a doctor, nor am I by any means an expert. This guide is true to my experience, but there are as many ways to use a cane as there are cane users!

This guide will not include: White canes for blindness, crutches, walkers, or wheelchairs as I have no personal experience with these.

This is meant to be a general guide to get you started and avoid some common mishaps/misconceptions in your writing, but you absolutely should continue to do your own research outside of this guide!

This is NOT a medical resource!!! And never tell a real person you think they're using a cane wrong!

[Image text] Arm bends a little. Cane height at hip joint. Many canes have adjustable height. Cane sits within the natural center of balance. Causes stress on: Triceps, upper back, wrist (pressure) fingers (grip). Helps with: Joints (lower back, hip, knee, ankle, foot), weakness, balance, pain.

The biggest recurring problem I've seen is using the cane on the wrong side. The cane goes on the opposite side of the pain! If your character has even-sided pain or needs it for balance/weakness, then use the cane in the non-dominant hand to keep the dominant hand free. Some cane users also switch sides to give their arm a rest!

A cane takes about 20% of your weight off the opposite leg. It should fit within your natural gait and become something of an extension of your body. If you need more weight off than 20%, then crutches, a walker, or a wheelchair is needed.

Putting more pressure on the cane, using it on the wrong side, or having it at the wrong height can make it less effective, and can cause long term damage to your body from improper pressure and posture. (Hugh Laurie genuinely hurt his body from years of using a cane wrong on House!)

(some people elect to use a cane wrong for their personal situation despite this, everyone is different!)

A General Cane Guide For Writers And Artists (from A Cane User, Writer, And Artist!)

(an animated GIF of a cane matching the natural walking gait. It turns red when pressure is placed on it.)

When going up and down stairs, there is an ideal standard: You want to use the handrail and the cane at the same time, or prioritize the handrail if it's only on one side. When going up stairs you lead with your good leg and follow with the cane and hurt leg together. When going down stairs you lead with the cane and the bad leg and follow with the good leg!

Realistically though, many people don't move out of the way for cane users to access the railing, many stairs don't have railings, and many are wet, rusty, or generally not ideal to grip.

In these cases, if you have a friend nearby, holding on to them is a good idea. Or, take it one step at a time carefully if you're alone.

Now we come to a very common mistake I see... Using fashion canes for medical use!

[Image text] 4 Major Handle Shapes (significant variation and uses). Tourist/Crook/Hook. Classic shape, fashion and medical, easy to hook on things (arm, door, chair, etc), generally solid wood (stronger, heavier). Offset. Newer design, not a fashion handle, only handle for quad-bases, generally better balance, usually aluminum (light + cheap), soft handle, adjustable (rattles/clicks when swinging). Derby/Fritz/Anatomical/Contour. Classic medical shape, many fashion variants, some fashion + medical, varies in many ways, sometimes contoured to hand, comes in foldable styles, many aluminum styles, many customizable styles. Knob/Decorative. Fashion exclusive, knob shape hurts the hand after prolonged pressure (especially with designs), tend to be heavy, "sword canes" have the same issues.

(These are 4 broad shapes, but there is INCREDIBLE variation in cane handles. Research heavily what will be best for your character's specific needs!)

The handle is the contact point for all the weight you're putting on your cane, and that pressure is being put onto your hand, wrist, and shoulder. So the shape is very important for long term use!

Knob handles (and very decorative handles) are not used for medical use for this reason. It adds extra stress to the body and can damage your hand to put constant pressure onto these painful shapes.

The weight of a cane is also incredibly important, as a heavier cane will cause wear on your body much faster. When you're using it all day, it gets heavy fast! If your character struggles with weakness, then they won't want a heavy cane if they can help it!

This is also part of why sword canes aren't usually very viable for medical use (along with them usually being knob handles) is that swords are extra weight!

However, a small knife or perhaps a retractable blade hidden within the base might be viable even for weak characters.

[Image text] 4 Major base shapes (significant variation and uses). Adjustable base. Aluminum, standard modern medical, adjustable height, rubber base, wears down over time. Tripod/ quad base. If you need extra balance. Terrain attachment (varies, this is for ice). Removable, helps stop slipping on ice/snow/sand/etc, some canes have a retractable tip for ice. Classic base. Non-adjustable, custom only, modern standard still has a rubber base.

Bases have a lot of variability as well, and the modern standard is generally adjustable bases. Adjustable canes are very handy if your character regularly changes shoe height, for instance (gotta keep the height at your hip!)

Canes help on most terrain with their standard base and structure. But for some terrain, you might want a different base, or to forego the cane entirely! This article covers it pretty well.

Many cane users decorate their canes! Stickers are incredibly common, and painting canes is relatively common as well! You'll also see people replacing the standard wrist strap with a personalized one, or even adding a small charm to the ring the strap connects to. (nothing too large, or it gets annoying as the cane is swinging around everywhere)

Two canes side by side. The one on the left is painted a light pink, and the one on the right is painted black with a fire/lava pattern.

(my canes, for reference)

If your character uses a cane full time, then they might also have multiple canes that look different aesthetically to match their outfits!

When it comes to practical things outside of the cane, you reasonably only have one hand available while it's being used. Many people will hook their cane onto their arm or let it dangle on the strap (if they have one) while using their cane arm, but it's often significantly less convenient than 2 hands. But, if you need 2 hands, then it's either setting the cane down or letting it hang!

For this reason, optimizing one handed use is ideal! Keeping bags/items on the side of your free hand helps keep your items accessible.

[Image text] Where to put your stuff. Purses/bags. A lot of size range, Can mess with balance, Zippers are too hard with one hand, Handheld means you have no hands, over the shoulder only. Fanny pack. Accessible with one hand, Limited space, Good for balance. Backpack. Very physically comfortable, evenly weighted, holds a lot (medicine, foldable cane, emergency supplies, etc) can't access without fully stopping and putting cane down/hooking it on arm/dangling on strap. Pockets. Can only use on free side, many outfits don't have good pockets.

When sitting, the cane either leans against a wall or table, goes under the chair, or hooks onto the back of the chair. (It often falls when hanging off of a chair, in my experience)

When getting up, the user will either use their cane to help them balance/support as they stand, or get up and then grab their cane. This depends on what it's being used for (balance vs pain when walking, for instance!)

That's everything I can think of for now. Thank you for reading my long-but-absolutely-not-comprehensive list of things to keep in mind when writing or drawing a cane user!

Happy disability pride month! Go forth and make more characters use canes!!!


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8 months ago

Just made an account on Medium so I could read this. Made it about 1/3 through and I'm absolutely hooked and excited to finish it!! But first, time for a nap.

For the longest time, I have had trouble understanding FND - specifically whether it's just a shitty diagnosis made up by the medical system to gaslight people or if it's a genuine medical condition. This essay is rly helpful and has already broadened my understanding. It's incredibly well written, particularly bc of the extremely thorough research it's a result of

Cadenza for Fractured Consciousness
Medium
A Personal History of the World’s Most Misunderstood Illness

I am one of the most medically examined people in North America. For over a decade, no one could explain why I lost my ability to walk, speak, and use my hands. Why the lightning-like headaches? Why the ringing in my ears? Test after test came back negative. Doctors thought I might have a genetic abnormality no one's ever seen before, or a condition so rare that it had previously escaped medical classification. Then I got accepted to the top undiagnosed disease research program in the world, and they told me the only diagnosis I was unprepared to hear: it was Functional Neurological Disorder (FND), a much-misunderstood condition which was once known as Conversion Disorder, and before that, as Hysteria. And that was only the beginning of things getting weird. The essay above is the product of three years of research into the history, neuroscience, and politics of FND. It touches on the many medical failures that define the history of the disorder, the pervasive sexism and lazy mind-body dualism that prevented scholars from seeing it clearly, and why - finally - a better understanding may be at hand, with revolutionary implications for how we understand human consciousness and the experience of having a body.

FND fucked my life up. This is my reply. Thanks for reading.


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9 months ago

I'm sorry, I'm trying

you will get up & you will make that to do list & you will be realistic about your limits & you will take it easy but steady & you will eat good food & you will get things done & you will move your body & you will do things that make you happy & you will limit your screen time & you will be the thing that saves you

8 months ago

I feel like this a lot lately, especially bc uni started again and I'm using a wheelchair now. The other day in anatomy class I was constantly apologising and being just my general awkward self. A friend of mine and fellow med student messaged me later to ask if I felt like I was in the way with my wheelchair and to remind me that I belong there just as much as anyone else🥺 so thankful for the few friends I have found in medschool who are genuinely kind and accepting when it comes to my disabilities.

I'm in medschool and I'm the only visibly disabled student in my semester. I'm not very social outside of classes so I can't be certain, but I'm fairly sure I'm the only visibly physically disabled med student in multiple years. I've heard about one other who is atleast 4 years ahead of me. So, in doing the math I can conclude that I'm 1 out of 2 visibly physically disabled med students out of roughly 3500 med students at my university.....

if you feel like you’re ‘getting in the way’ as a mobility aid user, particularly with larger aids like wheelchairs, rollators/walkers, gait trainers and service dogs, That Is A Fault Of The Space (and potentially the people), not of you. You deserve all the space you take up and more.


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9 months ago

hi, you there who are or are thinking about spending all day in bed, it’s okay, I’m not telling you to get up. I’d just like to do a quick check in to make sure you’ve got everything you need to be comfortable and safe.

Have you gotten up to take any meds you need?

Do you need to open or close your windows or curtains/blinds to make your environment nicer? (Fresh air, keep the cold out, sunlight/darkness)

Do you have a water bottle or a glass of water easily accessible? (Can also be juice, cordial, a meal replacement drink or anything else)

Do you have any over the counter or prescription as required meds you might need, like painkillers or anti nausea meds?

Is your phone or laptop charged?

Are you wearing comfortable clothing?

Do you have enough blankets/pillows to be warm and comfortable?

Do you have any snacks like fruit or chips or muesli bars in case you can’t get up to make a meal?

Are you able to change positions in bed (or sit up if you’re able)?

Do you have any regulation tools like fidgets, ear plugs, or journaling/art books or low energy hobbies you might want?

Are you being gentle and patient with yourself and your body today?

Thanks for doing this check in with me. I like to have some of these things prepared on my nightstand, or all together in the same space in my room so I don’t have to do as much work on low energy days. It can also help to have someone else prepare or get these things for you if you’re unable. Hope you have an uncomplicated day.

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24, they/them, nonbinary lesbian, disabled. Studying medicine, working on my internalised ableism, prioritising finding out what I like to do. I write, ish, or try to at least and that's something

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