Felt kinda good today. Put on Free Bird. Solo comes up, I'm enjoying the music. Wiggling my feet. Now I'm crying because I cannot dance. I want to dance!

And the worst thing is that I now have to worry about feeling like shit tomorrow because of an emotional outburst.

I'm really struggling this week between health, financial, and personal difficulties along with anxiety over the general state of the world.

Please share what helps you get through tough days.

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2 guys looking out at hell and one says 'it is even worse than I imagined' there are people all over the place saying things like "must be nice staying home all day", "yoga cured my cousin", "you don't look sick", "just be positive", "we are all tired" Artist is Glenn McCoy

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Woman in a wheelchair saying: “THERE IS NO MARRIAGE EQUALITY UNTIL PEOPLE WITH DISABILITIES CAN MARRY WITHOUT LOSING BENEFITS”

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I would rather you help me with a small task than waste 20 minutes praying for me to have been born with a different genome

cross-posted from: https://lemmy.blahaj.zone/post/27570463

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Disabled fantasy: Being able to sit in the room with all the doctors who ever asked if you were maybe just making your symptoms up...while they experience your symptoms. And ask them if they're making them up

Fuck Thursday Triumphs. Life sucks and is unfair.

Thought yesterday I had found the magic measure to be able to read longer texts again. Started to read my grandma's memoirs. Now I'm in pain from the overexertion.

Fuck fuck fuck fuck fuck!

Hey, fellow bed rotters!

I spend most of my time lying on my back, watching videos on my laptop which is about 30 cm above my belly. My head rests on a pillow which also supports my neck a bit. It is propped up so that I can watch the screen properly.

After a few months my eyes started to go bad. I have a hard time focusing on things. I chalked that up to staring at close screens all the time. But sometimes my vision would go back to normal.

It goes back to normal when I lie on my stomach for a while. I think it's because I straighten my neck and maybe because I relief pressure on my skull. I was also able to achieve that when lying on my side and straightening my neck.

Unfortunately I can't hold the "good" positions for too long.

Does anyone else have a similar experience?

cross-posted from: https://feddit.org/post/13712792

Symbiotic (Zach Cranor, lastplacecomcis.com)

cross-posted from: https://lemmy.blahaj.zone/post/26270464

try to maybe not make the obvious jokes in the commies like

[
  "haha, those r rookie numbrs",
  "i can do bettr than thad"
]

... bt i cnt stop u of cours! <3

What went well for you? Today or this week. No matter how small, let's celebrate the good things in our lives!

I'll try to post this regularly.

I managed to play more video games lately. A little bit more entertainment in the monotony of nothing is refreshing.

cross-posted from: https://programming.dev/post/29601751

I have moderate to severe CFS/ME and I've been using a Hypershell X exoskeleton to help me get about. It's not a medical device but it's designed to help people walk/run/hike/cycle further than they could on their own. A price increase was announced for the 20th of May (https://hypershell.tech/en-uk/blogs/news/hypershell-price-adjustments-coming-may-20-2025) so I thought I'd try to raise awareness of this product for anyone that might want to get one before hand.

I previously used two walking sticks for short distances and an electric wheelchair for anything more. I wasn't completely happy with the wheelchair and wanted something in-between. I was a bit skeptical at first but the Hypershell X does seem to deliver just that. There's a bit of a learning curve and I certainly did overdo it a lot in the beginning. After a month of getting to know it I definitely feel like it helps. Since spring arrived I've been trying to get out into the sunshine and it helps a lot with getting back upstairs. I've also been walking along my road a little. While walking I use 50-100% Eco mode (its less powerful mode) and for climbing stairs I change it to 50-75% Hyper mode (the full power mode not available on the Go X model). It works similarly to the pedal-assist on e-bikes in that it first detects the motion you're making then assists with it.

The urge to do even more with it is strong but using it during activities that can already be managed should be safer and have a clear benefit. It can easily be used with other walking aids. Sitting while wearing it is usually fine as long as there's room.

I have a referral link for $30 off if anybody would like it: https://hypershelltechglob.refr.cc/referral30/u/willgroom?s=sp&t=cp .

What went well for you? Today or this week. No matter how small, let's celebrate the good things in our lives!

I'll try to post this regularly.

I'm feeling a little bit better. Hope the trend continues.

cross-posted from: https://sh.itjust.works/post/35683029

Short Version - it's a list of things to do instead of ~~doing dumb shit~~ making life altering-ly bad decisions.

I typed this up real quick in reply to a question I saw elsewhere on Lemmy.

Why?

1. Your mental health just generally sucks lately
2. You're waiting on an appointment with a psychiatrist, psychologist, therapist, or other treatment program that is days, weeks, or even months away and you need to make it there in one piece.
3. If you get dragged to the ER for ~~doing dumb shit~~ making bad / harmful decisions, you want something to show the ER psychiatrist so they're less likely to admit you to the psych ward (I work in one. I try, and if you need it you need it, but they pretty much all suck).
4. You wanna start a trend among your friend / social group of thinking about these things ahead of time instead of right before or during the ~~dumb shit~~ life altering-ly bad decisions.

Also a cool upside: you can make this all on your own and never have to show anyone. You can print it off and write on it and stuff it under your pillow, you can take a picture of it and burn it, you could just write the entire thing out in a password-protected note. This is for you, and while it can help to share the plan with your loved ones, you don't actually have to show it to anyone!

Here's the SAMHSA template but if you don't like it there's plenty of different variations around on the internet or you can just make your own.

Components:

1. Warning Signs: especially the less obvious ones you might not think about consciously, sleeping too much or too little, eating too much or too little, forgetting to shower, etc.
2. Things you can do on your own: can be self-care activities like watching a favorite movie or having an at-home "spa day," or making sure to handle a responsibility that might make things worse if you miss it like making a doctors appointment if you already have one or checking on your finances.
3. People or places to go for safety: This could be a family or friend's house, or if you don't have a safe home environment it could be something like the nearby waffle house. It can be helpful to pick somewhere where there's people to check on you, but it could also be a place of solitude like a hiking trail. Just try to consider what is actually safest for you, if you have a tendency to get into trouble when you isolate, plan to avoid that.
4. People you can call: usually a friend or family member but it could also be a mentor or life coach or a trusted spiritual leader. I would put the person most likely to answer the phone for you at 3am near the top, then the next most likely et cetera.
5. Crisis resources: these are the emergency "noting else worked" resources. A lot of places have local options, and there are a lot of specialized hotlines for minority and under-served populations such as LGBT, PoC, and veterans. If you can't find any local ones or don't like / trust the ones you find, Here's Wikipedia's List

If you found this helpful and are interested in a similar but more in-depth concept (and especially if you have a longer / more complicated mental health history), I highly recommend WRAP Planning. Again it's a plan you make for yourself and that you don't even need to share with anyone else if you don't want to:

• SAMHSA Guide
• Fill-In Workbook Again, there's multiple versions floating around the internet, and you don't even have to use all of it. Mine is four typed pages (two when printed front & back).
• When you're filling out the list of things to do to stay well it can help to look at SAMHSAs guide to free support groups There's often better, more local options, I just give this one to patients as a cheat sheet to fill in some easy stuff

Hope this helps!

I was briefly working on a super basic website / guide to mental health concepts for people who can't afford / access therapy if anybody wants to collab (my biggest issue was lowering the reading level enough, it can be hard for me to remember which concepts will be new to someone who hasn't been working in the field for years).

What went well for you? Today or this week. No matter how small, let's celebrate the good things in our lives!

I'll try to post this regularly.

My illness is chronic but my tits are iconic.

cross-posted from: https://lemm.ee/post/60012482

I was telling someone recently about the "spoons" metaphor. I guessed they probably hadn't heard that before so before I said what I really wanted to say, I explained it. Basically, it means "unit of energy" and the idea is that we each have a different number of units each day depending on our ability / health.

In the time that it took to explain that, I could have just said what I needed to. How did it become so popular? The spoon doesn't even symbolise anything itself. So while I think it made a good visual demo when the first person presented it, I think it lands differently with people in conversation.

It is somehow reassuring to hear other people using it. It has shown me how many people struggle this way that I never realised before. But I think I'll stick with "batteries" or something that's easier to explain to people who aren't in the loop.

Thoughts?

Edit: The metaphor was invented by Christine Miserandino to illustrate her experience of lupus to someone in a café. I assume the cutlery was the best illustration device to hand in that situation and quite effective.

The recent publication of the 2024 results of the multinational Merck, which operates as Merck Sharp & Dohme (MSD) outside the United States, has revealed an unprecedented figure in the history of the pharmaceutical industry. Sales of the drug Keytruda, a monoclonal antibody indicated for several types of cancer, reached $29.5 billion after growing 18% last year. Never before has a drug reached such levels, shattering the record — once considered unattainable — of $19.95 billion set by Abbvie’s Humira in 2022. To put the figure into context, Keytruda has a turnover as high as the fashion giant Zara or the gross domestic product (GDP) of countries such as Senegal and Iceland.

“It’s a drug that has forced us to rethink how we fund some treatments in the public health system. The system wasn’t prepared for a therapy that could reach this magnitude,” says Sandra Flores, a member of the Spanish Society of Hospital Pharmacy (SEFH) and head of this service at Virgen del Rocío Hospital in Seville. One of the keys to the success of pembrolizumab — the name of the active ingredient in Keytruda — is its ability to act against various tumors. This has led the European Medicines Agency (EMA) to approve 30 indications for 15 types of cancer, 18 of which are currently funded by the public health system.