Ironic Chillness

Posts and reposts on being a spoonie. About me: Erin, UK-based Australian, writer and researcher, opinion-haver, traveller, word play enthusiast, craftser. She/her.

[dictionaryofobscuresorrows]

sonder

n. the realization that each random passerby is living a life as vivid and complex as your own—populated with their own ambitions, friends, routines, worries and inherited craziness—an epic story that continues invisibly around you like an anthill sprawling deep underground, with elaborate passageways to thousands of other lives that you’ll never know existed, in which you might appear only once, as an extra sipping coffee in the background, as a blur of traffic passing on the highway, as a lighted window at dusk.

video: sonder: everyone has a story

[whitepeopletwitter]

life is back pain

[ladyvoh]

During all this chronic illness stuff, if there is one thing I could tell people going through the same thing, it’s this - TRUST YOURSELF. You know your body. Even if you leave a doctors office in tears, feeling small and stupid, feeling upset - trust your gut instinct. If you KNOW something is wrong, do not let a doctor dismiss you or make you feel like a moron. See a different one, and a different one, and a different one - until one listens. Until one HEARS you. Until one investigates. You are not crazy, you are not a hypochondriac, you are not “asking too much,” you are not being dramatic - you know you. You know your mind. You know your body. Keep fighting. Always fight. I know it’s exhausting, I know it’s frustrating, I know it’s depressing, I know it hurts. KEEP FIGHTING FOR YOU. YOU ARE WORTH THE FIGHT. 

[ironicchillness]

[Description of images: woman performing the Beighton test (i.e. bending some joints so that they’re hyperextended) in a field - see more detail below]

I've been asked a number of times now by medical professionals and other people to demonstrate my hypermobility in various ways. Regular people ask me if I can put my feet behind my head. Medical professionals ask me to take the Beighton test. It's basically a test where you're asked to do some contortions, and if you can do 4 or more of them, then it's a sign of hypermobility/joint laxity/double-jointedness. By itself, it's actually no big deal. Hypermobility can give you a competitive advantage in activities like ballet or gymnastics or even swimming. But if you have hypermobility plus some other symptoms (particularly joint pain), it could indicate Joint Hypermobility Syndrome (JHS) or some sub-types of Ehlers-Danlos Syndrome (EDS).  This post is to raise awareness of hypermobility, JHS, and EDS.

These pictures of me doing the Beighton test were originally for my own reference. I can't really see how hypermobile I am, nor can I always feel when I'm hyperextending, so it's good to have some images to help me calibrate my internal feelings with reality. I've tossed up whether or not I want to post them online because I feel it's problematic to 'model' hypermobility and to conflate these images with what EDS looks like. People with hypermobility are not put on this Earth to perform party tricks. And also, you can be hypermobile and not be particularly flexible. A lot of people with hypermobile joints have a lot of muscle tension because the muscles have to work much harder in order to keep their skeleton together. Tension makes performing some of the Beighton test items really tricky. In the end, I've decided that I'd post it because lots of people haven't heard of hypermobility, but lots of people have hypermobile joints. Sometimes EDS is called a rare condition, but in reality it's probably more underdiagnosed than rare. Again, this post is made to raise awareness of hypermobility, JHS, and EDS, BUT I also want to caution that manifestations of these conditions might not look the way I look. Just because you see yourself as unflexible, doesn't mean you can necessarily rule out hypermobility. Likewise, being super flexible (or even hypermobile) is not itself any cause of concern.

So here’s what these images are/mean in terms of the Beighton test:

Image One - 1 point for each elbow that extends backwards over 10 degrees.

Image Two - 1 point for each knee that extends backwards over 10 degrees. Now, this can be hard to see. Note that if you look at the back of my legs, my knees don't look like they're hyperextending. That's just because the backs of my legs are super curvy. To see the backwards, hyperextended angle, you have to look to the front of my legs.

Image Three - 1 point if your palms rest flat on the floor with knees extended. I feel like this is a super-problematic way of looking at hypermobility. I've tended to be able to touch my toes through my life, but probably at various times my hamstrings would have been too tight to get anywhere near to palms flat on the ground. Hamstring tightness is very common, and it obviously will affect your ability to do this. So can compression. If you have a bigger belly or thighs, it's harder to touch the ground because they'd get in the way. Sometimes it's better to look at the party tricks you were able to do as a kid. Could you do the splits, for example? I once caused myself a nosebleed by kicking myself in the face. That's not so much a party trick as peak uncoordination, but you get the idea.

Image Four - 1 point for each thumb that can reach your wrist.

Image Five - 1 point for each pinky finger that bends back beyond 90 degrees. This picture is interesting because the finger that's helping my pinky is also bending backwards. Interestingly, I can't do this movement with my left pinky, so my Beighton score is 8 out of 9. It can be much lower in people with hypermobility disorders.

[cactus-spirit-deactivated202211]

Food Allergy Rant

Can companies PLEASE have a little fucking awareness when it comes to food allergies?

The protein bars I’ve been eating for over a decade have changed their recipe or methods.

My husband just saw the new box and said, “Did you know these may contain peanuts?”

I’ve been eating them for over TEN years and up until purchasing this last box they have never had a PA warning.

For one.

If you’re a food company and you change the recipe or manufacturing process you NEED to put a blatant label on the new packaging stating that the allergen warning has changed.

Someone could die if they missed that because they’ve been purchasing your product for a long time and not everyone is so paranoid as to check EVERY box they buy. They learn to trust a brand and feel safe.

Secondly - this is the THIRD company to cause this problem for me and my family in the last 3 months alone.

STOP taking more and more foods away from people with food allergies. There is no reason you have to start making something with an additional ingredient when your recipe has worked for years especially when the new ingredient is a major allergen.

[spooniestrong]

Just a friendly reminder for you – some medications (as well as some diseases) make you more photosensitive with sun exposure! 😎☀️

Check with your doctor or pharmacist about your risk. 💙

[fbdirectory]

[angry-comics]

[death-by-lulz]

somebody just drew my life…

[chasing-asterion]

Flare Prep Guide

I’ve been asked how to Flare Prep - my term for organising and preparing everything I need for bad health days. This works for both physical and mental illness, medicated and non-medicated.

My Room

My set up (including medical and first aid kit)

Makeshift kitchen and low energy foods

Clothes

Fake shoelaces

Flare wear

Hygiene

Low energy showers

Therapy bath

Medical

Medical tape

Heat packs

Drug-free pain relief

Gentle exercises for chronic pain

Mental

Spoonie Boredom

Mental health and compassion

Mantras for flares

Studying

Understanding Fatigue

Art therapy 

How To 

*Old posts but still valid

Section 1

Section 2

Section 3

Section 4

Please rb because this could really help people.

[ironicchillness]

Medical people I no longer have time for

(after years of being in the mental health system and now finally getting treatment for physical illness)

People who get frustrated with you for not getting better as quickly as they want.

People who just keep giving/suggesting to you different diagnoses rather than engage with your actual issues (especially if your diagnosis is already well-established and other things have been reasonably ruled out).

People who decide on your behalf that you shouldn’t go on a really useful medication in order to protect a hypothetical, unborn child that you’re not even sure you want to have.

Likewise, people who tell you what reproductive choices you should or shouldn’t make without asking you what you want. 

For a physical condition: “We’ve done every test, so it’s probably psychological” (because all physical conditions have an associated blood test?)

People who blame you for the issues you have.

People who understand the etiology of your issues as some kind of childhood trauma you don’t remember and almost certainly didn’t happen.

People who tell you that your critiques or questions about their treatment are a sign that you’re resistant and you’re ducking important issues. Always a red flag when people start making accusations about your character rather than, you know, addressing your concerns.

People who spend a lot of time praising your (in my case, male) partner for doing ordinary household chores and putting up with you.

People who require your story to be corroborated by someone who isn't disabled before they believe you.

People who don't know basic facts about conditions and treatments within their area of specialty.

People who can't or won't show their working or explain things to you.

People who start looking at their watch or forcing you out of their office after an inordinately short period of time.

People who assume that you’re lazy.

People who tell you how ‘severe’ they think your case is (especially if they don’t know you well, and especially especially if their views of severity are stereotypical/bullshit, e.g. “you must be a mild case because you’re still going to work”, or “you can’t have ADHD because you have a degree”).

People who seem to live by the blanket rule “pain isn’t a problem”.

People who gaslight you.

“But there’s nothing we can do about it if you have that, so it’s not worth getting a diagnosis.”

“It’d probably be fine if you lost some weight.”

People giving you a neverending list of lifestyle changes to make before they’re willing to make any investigations (”don’t eat dairy for a month and then see how that goes”, which then goes to “take this vitamin for three months” or “don’t eat gluten” or “try mindfulness”, “do a 6-week course of CBT” etc., etc. until everyone is dead).

People who say they “don’t believe in [insert illness]”.

“These are common problems for people like you” (I’ve gotten “girls like you” as well).

[ironicchillness]

Next time someone tells me, 'you should try mindfulness' I'm going to slap them in the face and then say, 'does your face hurt? I've heard mindfulness is great for pain!'

It's not that I'm anti-mindfulness at all. It's just that it's not treatment and it's so often used as a way to tell people to shut up. Or it suggests that your biggest issue isn't the pain itself but that your threshold for coping with it isn't high enough. But I'd put that back on the concern troller: The problem isn't me slapping you in the face, the problem is how you deal with that. It is beside the point that I could've just not slapped you in the face.

But seriously, I'm so afraid that I'm going to spend my life trying to extrend my coping threshold further and further and keep getting denied or waitlisted for treatment that would materially benefit me. To a large extent, expanding my ability to cope is a red herring. And because nobody can cultivate an infinite ability to cope, nobody gets to judge whether or not I'm robust enough.

As well, developing a mindfulness and/or meditation practice is something that can take a lifetime and sure, there's good research on the benefits but that doesn't make them instant, and it doesn't make it a panacea. Obviously. Plus, I suspect that people who are suggesting mindfulness to me know far less about it than I do (I've already been practicing for years!) and probably don't understand what it is. So, that sucks too.

[ironicchillness]

[Image description: a closing credits sequence of The Simpsons in which Adam from U2 says, 'if I didn't have my spoons, I'd go insane'] I was speaking to someone about spoon theory and they reminded me of this episode of the Simpsons where Adam from U2 talks quite highly of his spoon collection.

[spooniestrong]

[anyothergirl]

Business Card

(via Andro Hays on FB)

[steamedsoymilk]

I recently saw a pain scale with the caption “if you can still talk, your not at a nine” and it really really bothered me. One of my doctors (who works extensively with teenagers with CRPS) said that one common theme he sees in his patients is a complete lack of reaction to pain. He told me that when he performs procedures and tests that are objectively extremely painful, often the teenagers will be smiling and cracking jokes, even though he knows that they are in excruciating pain. At nine I can carry on a conversation (not very well, because at this point things start to get really cloudy for me, but still a conversation). During my nerve conduction study (If you’ve ever had one you know how awful it is, and if you haven’t, it involves a six inch long eighteen gage needle stabbed deep into your muscles over and over while you clench and relax them as instructed.) i chatted with the nurse and played games on my phone. It wasn’t that I wasn’t in pain, it was just I was also outside of it. For teenagers with chronic pain a disassociation from themselves and their bodies is common, even expected. If I “grounded myself”, saw myself as In my body and of my body and nothing else I don’t know how I would survive. In order to live, to get out of bed or wash my hair or put on pants I have to separate ME from my body. It’s how I can pop my shoulder out of socket and put it back in during a conversation. It’s a matter of survival. And I’m tired of people saying that my pain isn’t real or valid because of it.

[ironicchillness]

I relate so much to this disassociation - I’ve never seen it described like this before, and this is exactly it. Things people tend to find painful (anything from getting a tattoo to subluxing or dislocating a joint), I describe as uncomfortable. When I completely dislocated my shoulder, I told the triage nurse at the hospital that I was a 6 out of 10 in terms of pain (I’ve seen other people define dislocation as ‘their 10′ which is interesting to me). Pain is a big deal, but my relationship with it is such that it can’t be. If I avoided all the things that caused me pain, I wouldn’t have a life, I wouldn’t even be able to sleep (lots of subluxations occur during sleep), so what must have happened is that at some point I learned to tune it out.

In my experience, being disassociated causes a lot of problems. I have very little proprioception and coordination (an issue if you bruise and bleed very easily!). Also, in order to feel pleasure I often have to go to extremes (like overstretching, or putting heaps of spices in my food), which means that simple, corporeal joy (not orgasmic joy, but just the more normal pleasure of being a body) that people describe is often lost to me. The closest I come to understanding it is the feeling of relief. I also don’t enjoy tending to my body the way that a lot of people I know seem to (I don’t care for cosmetics, gels, creams, ointments, exfoliants, etc.). I don’t get it.

I agree though that the biggest issue is that being able to tune out pain makes it easy for people to gaslight you: to tell you your problems aren’t as bad as you think, or even that there are no problems. When I was about 11, I had a big issue with my knee which meant I was on crutches for about 3 months and limping for a couple of years after that. My knee wouldn’t bend normally, basically. Everyone told me that it was a psychological problem (like somatic symptom disorder) or that I was faking it. On one level, I knew it was real, but at the same time I was not getting medical treatment or investigations (for what was probably joint subluxation, looking back, but I can’t know for sure) because it had already been dismissed as psychological. I was constantly pressured to do quite risky things like run on a knee that could hyperextend but not bend very much. I shudder when I think of the damage (physical and emotional) caused by the fact that when I wasn’t clearly showing that I was in pain, people (even those supposed to take care of me like my parents and teachers) assumed that there was no ‘real’ pain. I’m 28 and I am still living with those repercussions.

[energysavingselfcare]

Nothing wrong with doing things as slowly as you need to. If you can only progress at 5 minutes a week, then do 5 minutes a week. If you need to do nothing but rest for a day or a month or a year, then do that. Be gentle with yourself.

[Visual description: A hand-drawn snail on a grassy hill says “My pace is perfectly fine. It’s your expectations that are messed up.”]

[catrasavedme]

also psa to my able bodied followers:

being tired because you stayed up late is NOT the same as a chronically ill person being exhausted because their body literally isn’t working right.

[fibro-battling]

I read somewhere that an able bodied person would have to stay up for 4 days to experience the fatigue of the average person w chronic fatigue

[spoonieofmayo]

!!!!!