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.

I have been dealing for years with stomach and gastric issues.

It blows my mind that I went nearly a decade of my life without ever having any kind of stomach illness other than the kind of "knots in stomach" triggered by stress.

Now, for the last half decade or so, it's just this constant cycle of getting beaten up behind the dumpster after school by my bully stomach.

I just need this shit to stop. My sanity is waning.

So, I know that getting info from here isnt the same as an official diagnosis, but doctors have been absolutely useless. I am still looking for a diagnosis that fits but it don't really find anything. I would welcome any person with ideas where to look for more info.

15 months ago, I had an infection, though I tested negative for Corona several times.

Afterwards I got flu like symptoms and didn't get better until I crashed a few weeks later.

After Several Months with strong Fatigue, Nausea, ME/CFS like Symptoms, where I barely could leave the house I was doing okay ish. Then Symptoms got worse again and I developed ChronicPain in in Muscles and Joints all over my body. It somehow seemed connected to eating but it took a long time to realize that it is connected to Histamin.

So thats where I'm at: I thought it might be mcas, but my "only" symptom after eating anything with histamin is pain and fatigue. It doesn't really fit the "allergic reaction" I see described as typically for mcas. My body also reacts super fast on anything, with histamin. I don't even have to swallow sometimes to feel the pain train starting. Histamin blocker help a lot, but any Histamin-Food is off the table.

Then I thought It might be fibromyalgia, because the pain seems really similar, but again it is connected to Histamin-Food, and doesn't fit anything I read online.

I would appreciate some comments from mcas/fibromyalgia people a lot, otherwise I'm at a loss what it could be -.-

A yes, one more thing: I am now completely unable to take any stimulants because of nausea. So, Coffey, Tee and ADHD meds are off the table. :/

cross-posted from: https://lemmy.dbzer0.com/post/40980009

Aptly ruled

Patients are taking part in a trial that scientists hope could ultimately lead to a cure for rheumatoid arthritis.

The AuToDeCRA-2 study seeks to prove it is possible to train white blood cell commanders - dubbed the "generals" of the immune system - to order other "soldier" cells to stop attacking healthy tissues.

Imperial College project could lead to less invasive testing and combat increase in antibiotic resistance

Jodie is a canine with special ­powers, scientists have discovered. The golden labrador can smell and ­identify ­particular bacteria and could soon play a key role in helping researchers develop a programme in which dogs could sniff out individuals infected with dangerous microbes.

The project, recently launched by scientists at Imperial College London, could be vital in the battle against antibiotic resistance as well as the treatment of patients with lung ­disease and other conditions, they say.

“We believe Jodie and her fellow medical detective dogs point to a new way to spot infected individuals, just by having a sniff of their socks or shirts,” said Professor Jane Davies at Imperial College.

“They could become a major help in tackling antimicrobial resistance and conditions like cystic fibrosis.”

Cystic fibrosis is one of the world’s most common inherited illnesses. A defective protein allows mucus to build up in lungs and other organs, triggering chronic infections that worsen through life.

[article continues]

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 started a website to collect all my late grandmother's art. She made great paintings and collected other great art. I hope my relatives will help me in getting photos and descriptions. So far they all like the idea but nobody except for my sister in law sent in any photos. Hopefully that will change in the next few days.

For anyone curious it's at https://brigitte-tantau.de/.

Two part meme. Part one is a crying young person who looks like they're desperate to get someone to understand something. Caption: 'Me explaining why I can walk fast and run but can't stand or walk slowly well'. Part two is a super annoyed looking, slightly older person. Caption: 'people still assuming I'm lying out of laziness'.

Edit: I love this community so much, thank you all for trying to help!

cross-posted from: https://lemmy.blahaj.zone/post/23174866

sometimes i impress myself :3c

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 disability got boosted to the next level which means more money and it will be easier to organise transportation should I need to go anywhere. And I think applications for future stuff will get easier.

Take that, lady who wrote I could wash my hair because I could lift my hand above my head once!

I usually use the orange 3m foam ones or the silicone ones.

The silicone ones are much comfier and seem to block out the sound just as much. The issue is neither block out the sound enough for me.

I also use white noise and turn the tv on and its not enough.

Does anyone have specific earplug recommendations for sleeping please? Side sleeper here so I can't use wireless earphones 😢

cross-posted from: https://lemmy.blahaj.zone/post/22601408

Five years on from March 2020, millions of people still face debilitating symptoms, with huge repercussions on public health and productivity. But politicians are starting to pretend the pandemic never happened.

Article “Highlights”

The unwillingness to discuss chronic illness in these conversations is especially concerning when combined with the scepticism faced by long Covid patients, who have to advocate for themselves so that medical professionals, employers and loved ones understand the gravity of their illness. Many report beingdisbelieved; shockingly, the then prime minister Boris Johnson scrawled “bollocks… this is Gulf War Syndrome” next to an October 2020 memo discussing long Covid and its symptoms. Anyone posting about their experience online is likely to be accused of lying, or being lazy, or in the pocket of big pharma. “I certainly think being disbelieved is one of the biggest traumas for Covid patients,” says Sinclair. (This distrust will be familiar to patients with myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, who have had their symptoms ignored or dismissed for decades. There is definitely overlap between long Covid and ME/CFS, says Sinclair, but they need to be differentiated.)

All of this conspires to make long Covid patients feel invisible, voiceless and forgotten. On top of the chronic pain and unpredictable recovery they face, the effect can be devastating to individuals’ mental health. Worrying numbers of long Covid patients report depression, anxiety and insomnia; in a 2022 survey, 45% of the nearly 200 patients who responded said they had contemplated suicide. “It’s a really awful illness,” says Heightman. “It’s not uncommon for us to have an appointment with someone, and them to share that they feel suicidal. It’s a particularly difficult illness to cope with, especially in people who were previously well, and the shock of losing their health and the uncertainty about the future is intolerable.”

Even though we are seeing fewer headlines about long Covid, previously healthy people are still contracting it, with each successive infection increasing the risk. “We sometimes will see someone who’s had Covid one, two or three times without problems, and then on the fourth time, suddenly they’ve got long Covid, and that makes them ill for a long time,” says Heightman. More disturbing still are the risks associated withchronic inflammation for long Covid patients, even if they have outwardly recovered. “It’s likely to age you,” says Sinclair, “so it’s going toshorten your telomeres, and therefore increase your risk of early death. It’s also going to increase your risk of any inflammatory condition: cancer is a high risk; we may get heart disease, diabetes, dementia. There’s a huge knock-on in every body system from long Covid.”

cross-posted from: https://lemmy.blahaj.zone/post/22641699

A study involving over 3,000 participants – both patients and clinicians – found that these misdiagnoses (sometimes termed “in your head” by patients) were often associated with long term impacts on patients’ physical health and wellbeing and damaged trust in healthcare services.

More than 80% said it had damaged their self-worth and 72% of patients reported that the misdiagnosis still upset them, often even decades later. Misdiagnosed patients also reported lower levels of satisfaction with every aspect of medical care and were more likely to distrust doctors, downplay their symptoms, and avoid healthcare services. As one patient reported, it “has damaged my trust and courage in telling doctors very much. I even stopped taking my immunosuppressive medicine because of those words”.

Following these types of misdiagnoses, patients often then blamed themselves for their condition, as one individual described: “I don’t deserve help because this is a disease I’ve brought on myself. You go back to those initial diagnosis, you’ve always got their voices in your head, saying you’re doing this to yourself. You just can’t ever shake that. I’ve tried so hard.”

One patient described the traumatising response their doctor’s judgement had on them: “When a rheumatologist dismissed me I was already suicidal, this just threw me over the edge. Thankfully I am terrible at killing myself, it’s so much more challenging than you think. But the dreadful dismissiveness of doctors when you have a bizarre collection of symptoms is traumatizing and you start to believe them, that it’s all in your head.”

cross-posted from: https://lemmy.blahaj.zone/post/22643393

Three years ago, the UK entered what was supposed to be a new era - one where we had learned from the pandemic, adapted, and built a future where health and safety coexisted with normal life. Instead, 'Learning to Live with Covid' became a euphemism for abandoning any real learning at all.

Despite the suggestion of change, little has been done to protect people in workplaces, schools, hospitals, or public spaces. Instead of solutions grounded in science, we were given advice about flimsy homemade 'face coverings' and difficult to adhere to 'social distancing' guidance while the fundamental issue - airborne transmission - was ignored. And for those who were (and remain) Clinically Vulnerable, this failure to 'learn' has developed into a glaring equality issue, creating systemic disadvantages in work, education, healthcare, and often basic participation in society.

cross-posted from: https://lemmy.world/post/26078980

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 best friend phoned me this week to catch up. It was nice to see him and his family again, although it still was exhausting.

Plus, my family made some culinary experiments that all paid off. Great food makes for a little bit of happiness.