survivingfmandcfs

[survivingfmandcfs]

my body, tearfully: when sleep???

me: my dude we just woke up!! It’s time for wakefulness and doing things and Productivity

my body, weeping: but???? when sleep?????

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In case anyone finds it helpful because mobility aids are horrifically expensive and inaccessible…

And for those people who have access to mobility devices but might benefit from a second chair they can abuse without risking expensive damage…

Erik Kondo has made a website, Open Source Innovations, that details plans for DIY wheelchairs. These wheelchairs can be made from common materials like wood, plastic, and pvc. They are lightweight and can be custom fit to the user allowing from the same degree of movement you would get from a custom chair. And they are durable and easily repairable. (he has been stress testing his latest design by dropping it down stairs, dropping it out of a car, launching it across a driveway, and throwing it off a deck). Its 12lbs and I think he said its was in the $200 ish range for parts.

He also is working on cheap, open source, accessible designs for beach chairs, off road chairs, motorized attachments (think smart drive), and so on. Plus he skateboards in his wheelchair. Cool dude, helpful info, pass it on.

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I promise I'm really smart it's just all my best thoughts get lost in The Fog

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"Two researchers in the US and Australia have discovered important mechanisms that prevent B cells from attacking the body’s own tissues in autoimmune diseases like arthritis, lupus, and multiple sclerosis—and in the process have won a prestigious prize.

Normally, the body’s immune system protects us from viruses, bacteria, and foreign substances. However, in autoimmune diseases, the immune system starts attacking tissues in the body instead.

Researchers had long tried to discover the cause of autoimmune diseases. But, Christopher Goodnow and David Nemazee, independently of each other, adopted a new approach.

They asked why we do not all develop these diseases. Their focus was on B cells which, together with white blood cells and T cells, are the building blocks of our complex immune system.

“They have given us a new and detailed understanding of the mechanisms that normally prevent faulty B cells from attacking tissues in the body, explaining why most of us are not affected by autoimmune diseases,” says Olle Kämpe, member of the Royal Swedish Academy of Sciences and chair of the Crafoord Prize committee that awarded the pair 6 million Swedish kronor ($600,000).

Neutralize B cells

In recent years, physicians have started to experiment by using existing drugs to neutralize B cells for patients with severe autoimmune diseases, including lupus, rheumatoid arthritis, and multiple sclerosis, which has proven to be very effective at improving their quality of life.

Thanks to this year’s Crafoord Prize Laureates, we have gained fundamental new knowledge about what is happening in the immune system during autoimmune disease attacks.

“This also paves the way for development of new forms of therapies that eventually can cure these diseases—or might prevent them in the future,” said one professor of clinical immunology at the Royal Swedish Academy of Sciences...

More details from the video, since the article glosses over the particulars:

"The laureates discovered what is now called B cell tolerance.

When B cells develop in the bone marrow, not all of them are perfect. To remove the faulty ones, a mechanism starts, in which defective cells are programmed to destroy themself through apoptosis.

The laureates discovered two new mechanisms that are used if some of the bad cells are left. Re-editing, where the immune system alters the combination of receptors, and anergy, that silences B cells with self-reactive receptors.

The laureates were able to demonstrate that these mechanisms sometimes fail. This means that faulty B cells can cause an attack on the body's own tissues – leading to autoimmune diseases.

Thanks to the laureate’s discoveries, doctors like Anders Bengtsson soon felt able to start treating patients with lupus, arthritis, multiple sclerosis, and many other autoimmune diseases, with medicines that eradicated B cells.

Anders Bengtsson: "I'm very happy that B cells has gotten so much attention because of the laureates. I have seen my patients getting so much better and getting a better life."

Autoimmune patient: "Today, I feel very good. I really have hope in the research that it will revolutionise things and perhaps even cure it all. That’s what I want, hope for, and believe in.""

-Article via Good News Network, April 6, 2025. Video via The Royal Swedish Academy of Sciences, January 29, 2025.

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I HATE this insistence that we have a moral obligation to worsen our health for the "greater good!!"

"Don't ignore politics-"

STOP. STOP IT. If that's what it takes for you to survive, do it.

There's a reason in the mental hospital they block the news channels! It fucks people up! People find the world so damaged, future so hopeless, and situations so overwhelming they literally kill themselves!

Yes, yes, the activism guilt-tripping is supposed to be for those who simply don't care, but the disabled people who do care are the ones who wind up feeling guilty!

"It's a privilege to be able to ignore politics-"

No, it's a privilege to be able to pay attention to politics without having to be literally hospitalized.

Do. What. It. Takes. To. Survive.

"I need ALL of you to start paying attention-"

Wrong. You need all of us who are ABLE to start paying attention.

Do what it takes to survive.

They are asking you to join in a 70-mile hike up a mountain, where in order to win, as many people as possible must reach the top as quickly as possible! But you are in excruciating pain and have no legs! There is no accessible way up the mountain! In trying to climb the mountain, you will cause yourself irreparable harm and likely death! You feel bad, you're letting everyone down, you can't keep up, you're about to fall, but your friend is saying "hey, I get it, sometimes my legs get super sore, but you have to keep climbing! It's our duty! Keep going! The only way to save everyone is if we do this together!"

They DON'T get it. Even if they say "well I know so-and-so who also has no legs and he just uses his arm-strength and he's at the top already, what if I carry you for a few steps until you have your strength back?" You're not him! He's clearly aquired tools and strengthened muscles you have not, and might never be able to! Only YOU know what you can handle. Do not fall to your death because you feel guilty!

Survive.

Survive.

Sometimes, the biggest act of resistance is surviving.

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I know we talk a lot about keep jumping on boxes, but I'm honestly so grateful for Joe hills' knife theory; a variation on spoon theory that says once you're out of spoons, you can choose to take knives instead in the knowledge that it will hurt later. and the number of times I've told myself 'ok let's take the knives' is so high that I've found it really helps to acknowledge it. Thanks, Joe

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Sometimes I eat a "real" meal. Other times, I pile finger foods on a plate and call it lunch.

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somehow instead of saying "as a treat", I've started using the phrase "for morale", as if my body is a ship and its crew, and I (the captain) have to keep us in high spirits, lest we suffer a mutiny in the coming days.

and so I will eat this small block of fancy cheese, for morale. I will take a break and drink some tea, for morale. I will pick up that weird bug, for morale.

I'm not sure if it helps, but it does entertain me

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i am supposed to have the energy… to do stuff...?

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5 simple exercises to awaken dormant muscles

{source}

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~Just little chronic illness things~

Being too exhausted to engage in anything

Unpredictability™- will I be able to do the shit I could do yesterday?

The fucking GUILT

Battling ableism and ignorance on top of your illness/conditions

Never being able to plan anything or set a routine because of the aforementioned Unpredictability of Being Sick™

Your symptoms flaring because you're stressed -> stress rises because you're sick -> *flaring intensifies* -> repeat until you're a solid rock of tension and nausea that can't get out of bed for days on end

Getting one (1) good day and scrambling to enjoy it as much as you can

Oops you over did it! Enjoy a full week of recovery from having one single good day 🙃🙃🙃

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Literally every single Neuroscience guy I listen to on audiobooks and podcasts: Multitasking is a lie. You are not more efficient. You're just rapidly switching between tasks and doing all of them slower but your brain is tricking itself into thinking it's more efficient because you get a little dopamine reward when you activate the 'change task' neurons. And you're burning up way more glucose in the process, leaving you more tired with less done. STOP MULTITASKING. JUST DO ONE THING. PLEASE IT'S ONLY WORSENING YOUR ATTENTION SPAN. WE'RE BEGGING YOU, PLEA--

My ADHD: Don't listen to them, babydoll. You are sooooooo efficient and attractive. Whoop. You got an email. Whoop you got a text. Whoop you got a blog ask. WOW look at all the tabs open on this window. Do you even remember what they're all for? Better look through them and close the ones you're not using because you're soooo sexy and efficient. Whoop, email again.

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25% is better than 0%. trying a little is better than not trying at all. eating a protein bar is better than nothing. using dry shampoo is better than not showering. cleaning one section of your room or house is better than not cleaning any of it. writing a paragraph of your essay is better than not starting it. whatever you can manage today is okay. you can try again tomorrow. little steps are to be proud of.

[survivingfmandcfs]

People can’t handle ways of living that are different from theirs. They can’t even handle the thought that people who aren’t daily shower takers live among them and they haven’t even noticed.