Thank you. It’s been over a month and still haven’t quite got my head round the fediverse!

It’s not lemmy as a whole is it? I thought the main url is lemmy.org. It’s only a couple of instances that used .ml.

I was 21 when I was diagnosed, symptoms started at 18. I was told I’d never be able to work, that I’d never have children, and I’d be lucky to see 30. I went to an irl support group and had to sit through a 55 year old woman sobbing because she needed to take early retirement and she really liked her job. At the time it felt so utterly minuscule compared to the loss I was grieving it just made me angry. I was angry a lot when I was younger. I’m 37 now so I beat the odds and I’ve learnt to live with the unfairness of it - and to accept that people like that 55 year old woman are perfectly entitled to grieve for their loss. Suffering is subjective, and if that’s the worst thing that ever happened to that woman, it’s terrible for her.

RE the pain… MEDICAL CANNABIS. I’m in the UK and it’s only recently been made legal for medical purposes. You can’t get it on the NHS though, I have to pay privately and without a job that’s really hard. But it’s worth the sacrifice - my life has improved dramatically in the year I’ve been taking it. I was on a huge dose of gabapentin (sister drug to lyrica) 600mg at 8am, 12pm, 4pm and 900mg at 8pm. Plus NSAIDs, immune modulating drugs, benzodiazepines, amitriptyline, and 3 different opioids. I’ve reduced those drugs by about a third since I started medical cannabis and my pain is better than I can ever remember.

Hope the lumbar puncture goes well - it’s not as bad as it sounds, promise! The bit of back pain you can get afterward is just like period cramps - a hot water bottle will help 🙂

I’m sorry to hear that. As someone who’s been on prednisolone since 2008 without pause, I truly hope IVIg is available for you (it wasn’t suitable for me). I have a whole bunch of rare incurable illnesses, if you need a stranger to talk to feel free to message me. It can be a lonely journey, I’m happy to help if I can.

I’ve been there. It’s such a relief to finally have an official diagnosis, you feel strangely happy when you eventually get it. Just a little word of caution - if it’s an incurable condition there’s a bit of a dip after the initial “happiness”. It’s still better to have a diagnosis than not, but it can feel a bit anticlimactic. I’m wishing you well!

He was “transcribing” the messages I supposedly sent him. Really sick stuff.

There was a kid, maybe 14 or 15 who complained about his mum and sister in r/parentsarefuckingstupid or a similar sub. He didn’t mention being autistic in the post but it was pretty clear - it was his behaviour and response which was inappropriate, not his mum’s. Having grown up with an autistic brother his reaction was very familiar to me. I tried to give him some tips to help him avoid conflict and smooth the situation over - “apologise even if you don’t mean it right now, it’s the easiest way of getting your game back tonight. In future don’t raise your voice to your sister even if she’s shouting. Remove yourself to your bedroom to calm down. Ask to speak to your mum alone to explain your side of the argument. Etc” pretty benign advice that wasn’t judgemental or insulting in anyway. I put a decent amount of time into writing my response in a way that was constructive and helpful from his perspective. I felt pretty good about myself afterwards, like I’d done my good deed for the day.

The kid went absolutely psycho. He was writing comments and immediately deleting them, then saying I was sending him extremely inappropriate sexual messages. He was summoning all the bots he could think of, like the n-word bot to accuse me of racism (I’ve never ever used the n-word). It was so out of left field I was stunned. A couple of people stuck up for me in the comments but it left me really shaken. Who the fuck accuses someone of being a racist pedophile out of nowhere? That boy needs help and it has nothing to do with his autism.

“Everything happens for a reason”

• technically correct, completely unhelpful.

“God doesn’t give you more than you can handle”

• Fuck. Off.

There’s a perfect example of that on my ground news widget today. It’s shows “blind spots” stories that the left and the right are under reporting. Todays under reported story by the left is “Tucker Carlson interviews Andrew Tate”. Of course the left aren’t reporting on these two cretins spreading their hatred. It’s not news, and it doesn’t deserve attention.

True. It’s interesting to read a right leaning perspective and a left leaning one of the same story though.

Ground news is pretty good.

I can only assume that people don’t understand why it was brought in on YouTube and TikTok in the first place because so many people do it when it isn’t remotely necessary. If you make your living posting on social media, then fair enough, I understand you need to fall inline with the rules of the platform. But why the hell would you self censor posts you don’t make money from? Utterly ridiculous.

Everyone should hate Andrew tate because he’s a toxic influence on the world - particularly on boys and young men. Get out of here with your BS.

Needlessly censoring words like sex. It wasn’t necessary on Reddit and it certainly isn’t necessary now.

This was informative and not too technical for a layman. Good work, thank you.

I found a decent alternative to Goodreads the other day called bookdigits. It’s a mobile app but pretty good. It has a sister site called screendigits.com for movies and films.

It’s really hard to rank them… Facebook is awful for spreading misinformation and it’s echo chamber effect. I give it bonus shit points for being the turning point for social media - it got almost everyone to use it and everything went down here from there. On the positive side it truly brought people together and it was a great tool for sharing your life with friends and family you might not see or speak to regularly. At least to begin with.

YouTube is shit for giving wackos a platform and it’s alt-right pipeline. How many young men have been influenced by Andrew rate type videos? Joe rogan and he’s ilk are straight up cancer. BUT there are tonnes of really really useful tutorials etc that you couldn’t find before.

TikTok is trash for turning people’s brains to mush, pushing the “main character” narrative and encouraging young people to do all kinds of dangerous, stupid shit. But I think it’s fairly benign compared to the others.

Twitter is just a terrible place. Just a toxic, bullying hellhole. Any redeeming qualities (allowing people living under a dictatorship access to news and to broadcast what’s really going on there, for example) have long been lost since Elon arrived to make everyone’s life worse.

The concept of Reddit is better than the others - you can find your own little community dedicated to the most niche interests. It was pretty easy to just lurk and to block people/subs you didn’t want to see, and I think it helped a lot of people. Reddit the company are shit, but aren’t all companies bastards?

Special shout out to Instagram. It’s seems benign on the surface but I’d be a mistake to underestimate the devastating impact it had on young people’s self esteem. The unrealistic body expectations pushed on young people is awful. But it’s the trad wife/evangelical Christian/quiverful type communities which worry me the most. I can’t begin to imagine how many women and babies have died thanks to the no-contraception, home-birth, no vaccine bullshit. It’s not limited to Instagram of course, but it does seem particularly prevalent there.

They’re the only social media sites I’ve used, so based on my experience I’d say worst to best is:

Twitter Instagram Facebook TikTok YouTube Reddit

But honestly they’re all toxic and this was a depressing exercise.

Is it spelt Вітaлій or Віталію in Ukrainian? I don’t think I’d have any problem pronouncing or spelling your name in it’s romanized form, but I did complete the duolingo Ukrainian course so I have a little bit of familiarity with the language.

You’ve probably noticed the different ways Зеленский is spelt in English; Zelenskyy, zelensky, zelenskiy… Й doesn’t translate seamlessly to English and ий is even harder. I’d say Zelensky is the easiest to read/spell for English people. On that basis I’d go with Vitaly for strangers.

I can’t see why your English friends and co-workers can’t get used to Vitalii though. It’s really not that hard. But then I have a very common first name of French origin and a common Irish surname. It’s extremely rare for someone to pronounce my name correctly 🤷🏼‍♀️

Радий знайомству Віталій. Слава Україні!

Vk.com has a surprising amount of audiobook pages/groups/communities. There are some chrome plugins that download the books for you too. I’m not particularly tech savvy so vk.com and sites like 101audiobooks.net classicaudiobooks.com etc and overdrive are what I use on mobile. I use audiobookbay on desktop.

Users are called lemmings. Communities are called communities on lemmy and magazines on kbin. Communities makes more sense to me.