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YourHeroes4Ghosts

YourHeroes4Ghosts@beehaw.org
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Neurospicy, middle aged, she/her, queer, geeky.

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I’m just tired, sad, ill, disappointed, and so very alone. That’s all I got this week.

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Autistic burnout is serious and can lead to permanent loss of skills. It’s in no way your imagination, nor are you alone. I was permanently disabled by burnout in my 40s. I also knew someone (now sadly dead) who became permanently non-verbal in their 30s due to burnout. Don’t let anyone convince you that it’s not real.

For me, I suspect some of my skills are gone for good. For example , I can’t speak on the telephone at all anymore and I’m pretty sure I’m not getting that back, though I used to work in Communications and spent half my life on the phone. I’ve gotten some of my life back by living a slow-paced, autistic friendly life. For me this meant moving to a very rural area, but I know this won’t be an option for many in burnout.

On another note- in the future, if you want to cross post between Lemmy and Reddit, would you mind copy-pasting rather than forcing people to give Reddit our page views in order to see what you said? Many people on Lemmy no longer want to give Reddit any traffic at all- that’s why we’re here and not there.

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Honestly, when I left Reddit I was extremely excited by the potential of federation, but at least in the case of Lemmy, my enthusiasm was premature. I mostly stay on Beehaw these days.

I’m a member of a few communities on other instances- for example, I’m super into aquariums and “Pets” just doesn’t quite do it for me as it lacks in-depth discussion of aquarium fish, and as an autistic/ADHD adult “neurodivergence” doesn’t quite meet my needs as it seems to be strongly focused on people who only have ADHD.

The communities I’ve joined on other instances don’t have a lot of traffic, so I end up back here 99% of the time, and that’s okay. If Beehaw decides to become a non-federated community I will still be here. I have a few other accounts I can use to access the Fediverse should I want to do so.

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I started to post yesterday, but I was feeling down for no discernable reason, and I couldn’t think of anything to say other than how awful I felt. Today, thankfully, I feel a lot better.

Much to my joy, my youngest (who is 20 years old) has agreed that, instead of me scrambling around looking for perfect, expensive presents for Christmas for everyone (which is pretty much exclusively my job), we’re all just going to buy stocking stuffers for each other and let each person buy their own expensive things instead of expecting me to do it for them. It just seems so ridiculous to me that I got my kids addicted to a Christmas celebration that often left me so burned out that I’d spend the week between Christmas and New Year’s in bed. We’re not even Christian, and my kids are adults, so why on earth am I still killing myself to make the day perfect for them, when they have no interest in doing the same for me? We all have similar incomes, so this seems very fair to me. I hope it will take some of the stress out of the coming season.

Finally, I’m starting to feel better on CPAP. Got a full face mask instead of those horrific nasal pillows (I don’t get how having something shoved into your nostrils is supposed to be the most comfortable option, especially when I had to tape my mouth shut to make them work at all!). I kept waking up flat on my back, when I haven’t been able to breathe while laying on my back since the mid-1990s. Checked my data using OSCAR, and have learned a whole lot. Apparently, with a CPAP and a full face mask, I can both breathe and sleep just fine on my back- last night I only spent thirteen seconds total in apnoea- and I’ve had some episodes of deep sleep that lasted more than an hour, when I couldn’t maintain deep sleep for two minutes with untreated apnoea.

This of course makes me wonder if I’ve actually had apnoea since the mid-1990s and how much damage I’ve done to my brain. At my age I doubt I will get all of it back.

I’m concerned about my eldest, who seems very dull and quiet lately. They’ve been a hardcore tech person since they were a toddler (not even exaggerating) and are now saying things like “I just leave all settings on default, it’s easier”, and not even bothering to do a search when they run into issues with things. They are behaving like my 73-year-old husband and it’s super worrying because they will be 29 next month. I wish I knew what to do to help them.

I also need to stop treating this thread like it’s my personal blog, haha.

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I’ve lost 40kg in the past year, but currently cannot afford the new clothes I both need and deserve (I’m still a “plus” size so secondhand shops don’t have much for me). So this winter will be all about layering. I have thermals in several sizes, I’ll just wear the smallest against my skin and the largest on the outside! Next summer I’ll be able to get new clothes and with any luck, by then I’ll be a size that can be found anywhere!

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I agree with the “don’t use your autism as an excuse” side, but as a middle-aged AuDHD woman who can no longer hold any kind of paid work due to burnout caused by years of faking it in a high pressure career that I loved dearly and would have done for life if burnout hadn’t disabled me- I’m really repulsed the idea that all of us should just try harder to fit in. I did that, and it eventually destroyed me. It is not something that I’d advocate anyone else doing.

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I got some really nice chai from the local Indian supermarket. I gave up coffee a few months ago- or Ozempic put me right off it- and I had a hole in my life where a hot drink belongs. I’m glad to have found something I like.

It’s looking like it’ll be a stormy autumn and winter and honestly I’m here for it, even though I know the reasons for it are ungood on a global scale. I love wind and rain to a ridiculous degree.

I think I’ve finally worked out all the CPAP bugs but I’m still waiting to feel better. I suspect that part of the problem is that the dose of my blood pressure medication needs to be lowered and that’s making me tired, but I won’t see my GP again until next month so I have to deal.

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Yes, it’s so important to listen to your body. A HSP should not just ignore what they’re feeling or fight to endure discomfort, especially long-term discomfort like unsafe housing…if you are able to move, I hope you will, because constant negative overstimulation can lead to burnout, which can have a really severe mental health toll over a lifetime. I was rendered pretty much non-functional for much of my 40s because of it. Now I know I have to put self-care first or i will pay for it.

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I identified as HSP for many years prior to my ASD/ADHD diagnosis, but for my entire adult life I’ve done the same: first, I’ve made my bedroom a haven, with a weighted blanket, blackout curtains, fairy lights, etc. and I feel free to retreat to my room when the world is too much. My room is my space, designed for my comfort. (I have a house, but naturally it’s family space and when I’m overwhelmed I really need to be alone).

I don’t force myself to stay on overstimulating situations because I “should”- if there’s a pressing reason I have to stay a bit longer but I just can’t, a five minute breather outside can make a huge difference.

I already mentioned the weighted blanket, but if you don’t already have one, you should get one- and make sure you get one that’s around 10% of your body weight for best effect. I bought mine at the start of the Pandemic and I swear it saved my life, it allowed me to feel safe when absolutely nothing felt safe. Another tool in my box that I would never trade is good noise-cancelling headphones. I’m so glad it’s acceptable to wear them in public nowadays, they have been a lifesaver.

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As an autistic who has been online since the early 90s, this article didn’t speak to me at all. My autistic internet comprised IRC and USENET, and it died when LiveJournal died. I still have close friends from those days, when I have no close friends “IRL”- I can’t say that for anyone I met on Twitter or Facebook, in fact I found both of those platforms to begin enshittifying looong before any of the NTs began to notice it.

I don’t think it’s just because I’m an older AuDHD woman, I think the existence of Facebook and Twitter from the mid to late 00s killed the autistic internet.

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