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2·1 year agoI 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.
She looks a little like Paris Hilton in the top photo.
VosotrosPac doesn’t have quite the same ring to it.
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.
Ah I missed that sub, thanks for the link!
130·1 year agoI’ve just remembered “I’m a free speech absolutist, but not when it comes to parodies of me” and “tweeting my publicly available flight logs is sending out assassination coordinates”. What a joke of an individual. Cry more Elmo.
Excellent rebuttal @MedicPigBabySaver your well thought out argument has completely convinced me.
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.
I started a community !downtherabbithole for this kinda thing but written content isn’t as easy to find as videos unfortunately. I’m like you and much prefer reading to watching. There’s at least one text link there that’s an interesting read. I think there’s a long-form community on lemmy too, that might scratch an itch?