YAAAY!! FINALLY GOT 12 POINTS!!

MOOD

Hiii, I thought I'd make a post where I write some stuff about myself:) my handle used to be "trapped-in-a-burning-body"

So, intro facts:

▪︎ Danish

▪︎ 24 years old

▪︎ Nobinary lesbian

▪︎ My pronouns: they/them

▪︎ Disabled, lived with chronic pain for most of my life

▪︎ Studying medicine

I'm navigating going to uni while attempting to have a personal life and respect my body's boundaries. It's challenging on the best days, impossible on the worst. I've just learned how to bind books, and I've made a few too many already. I'm trying and failing to watch less netflix AND I've just started watching anime, which is very exciting. I love reading, mostly random medical books or fantasy, and I write poetry, mostly about being disabled.

I would love to connect with more people on here, so feel free to dm me:D

In case anyone needs to hear this, the average person does not wake up every day in pain. The average person does not feel like they have the flu every day of their life, and if you, like me, feel sick 24/7 you in fact have a chronic illness. If your doctor is dismissive of your suffering, keep finding doctors and pushing for tests until you get something. It's exhausting and expensive but you deserve whatever comfort is possible for you and your illness

It's jarring to realize your baseline is most people's "sick" but that just makes it all the more important for you to rest and be gentle with your body. You aren't being lazy, you aren't faking your pain. Your disability is real, and you deserve to take care of yourself and make things easier for yourself regardless if you feel like you've "earned" it or if you think it "isn't that bad."

If you are struggling, I see you and I care you so much

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!

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!)

(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!

(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.

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)

(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.

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!!!

this... this is actually really helpful

notes for my impostor syndrome:

• no, it's not painful to walk for abled-bodied people

• no, healthy people don't usually use every chance they get to lean against walls or sit down

• no, ableds don't dream about shower stool

• no, ableds don't celebrate days when they're not in pain. because usually they're not in pain

• no, ableds don't want to stop walking mid-way, lay down on the ground, curl up and cry and whine from pain

• no, ableds aren't exhausted by their own bodies 24/7

I recently went on a touristy vacation where I knew we were going to be walking a lot so I brought the cane I have with me. Mind you it was a 3ish week long vacation in a foreign country. I had bought a cane maybe a year before even though my doctor didn't think I needed it because "you could just sit down or not walk for long distances instead" and "you're too young to use a cane". So naturally I ignored her and followed my disabled friend's advice instead and bought a cane. But I barely used it because I got in my own head about not reaaally needing it and other internalised ableism stuff. Also people staring didn't help.

Fast forward to the vacation where I used it religiously. And it helped soo much! I noticed I could walk farther and walk for more days in a row, because my pain levels were lower. It helped so much that I could no longer justify not using it to myself.

Now it's 6 weeks later and I use my cane everyday.

When I go to the doctor, they hand me paperwork with a chart to locate my pain. I can’t pinpoint it. I “X” my whole body. My entire life.

— Glenis Redmond, from "I Stay Sick," The Listening Skin

I forgot about this post. But I did it @wittlepuppydog. I didn't shave my head completely, I just got a short hairstyle instead. It was about 5 months ago now and I absolutely love it. It has made the pain considerably more bearable as hair is no longer brushing against my face constantly, and I no longer have to tie it up to get it out of the way (which also hurts).

Honestly, it's not even just about the pain. I feel more like me. I recognise myself in the mirror. I like my hair, I like my face - something I could never comfortably say before. It feels like my pain gave me a gift. I never thought I would say something like that about my chronic pain. But yeah, it has helped and I have never felt more like myself than I do now.

And people's reactions and their staring honestly haven't faced me. I don't care about it anymore. Also, it's hard to say whether they're staring bc of the hair or bc I'm young and disabled and walking with a cane.

Thought I'd add some pictures for reference;)

I've been considering shaving my head because of the pain. It's still constant and my hair makes it worse. Is it stupid? Will I regret it? Will I feel like I'm "giving in" to the pain? Does that even make sense? I'm tired of feeling like I have no control over the pain. And this feels like a way I can maybe at least not hurt myself more and gain a little control back? I don't know. I'm tired

Why Does Fibromyalgia Weaken the Immune System? - Southern Pain and Neurological

Southern Pain and Neurological

Why Does Fibromyalgia Weaken the Immune System? - Southern Pain and Neurological

Various reports have proven that fibromyalgia does indeed weaken our immune system and raise levels of white blood cells.

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Firstly, studies have shown that fibromyalgia patients tend to have high counts of white blood cells and cytokines (immune cells), which is often observed when a patient is suffering from an infection. This in itself shows that this condition affects an individual’s immune system.

Similarly, further studies show that this disorder weakens our brain’s immune system. It does this by reducing the blood flow in the brain’s pain center, hence affecting the neuron receptors. This eventually leads to increased pain and stress levels and a weak immune system that is incapable of fighting off bacteria.

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cureus.com

The Influence of Pro-inflammatory Cytokines and Genetic Variants in the Development of Fibromyalgia: A Traditional Review

Fibromyalgia is a complex syndrome characterized by widespread chronic pain, without any obvious etiology, and it is often accompanied by a

Cerebral Palsy also causes cytokine dysgregulation. Did you know that? I just learned. How am I not dead?

sciencedirect.com

The association between proinflammatory cytokine polymorphisms and cerebral palsy in very preterm infants

Cerebral palsy (CP) is a nonprogressive motor disorder caused by white matter damage in the developing brain and is often accompanied with c

https://onlinelibrary.wiley.com/doi/10.1111/dmcn.14724