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

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.

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.

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!

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.

We had a windstorm midway through the week last week, with knocked about 75% of the apples off of my little apple tree, a few days before they would have been perfectly ripe. So we made apple crumble, and it was absolutely delicious. None of the apples were wormy this year even though we don’t spray the tree- just lucky I suppose.

I saw the CPAP specialist, who is apparently a respiratory guy, and he agreed to tighten up the settings on my CPAP so it stops giving me jumpscares in the middle of the night. I can go see him again in a month if that doesn’t help. So far it has not, but it’s only been four days. I also wrote to the nurse helpline to ask how I should dry my hose, and they not only offered to send me a spare hose for free, they are also sending a full face mask for when I inevitably get a cold. This is of course a completely new experience with ResMed, but they can keep it up!

I know I’ll die with student loan debt, because I dropped out of college after four and a half years, never have had a decent job, and finally moved to another country without leaving a forwarding address. They found me once after I filed an absentee ballot, then I moved again. Welp, guess I can’t vote in the US anymore.

However, I refuse to be held back for life because of contracts I signed when I was 18 and too stupid to know what I was getting into. I didn’t even want to go to college but my mom made me.

The whole thing is ridiculous and stupid and it sucks that the way I took is the only way out, as most don’t have the option to leave the country and never come back.

One month on CPAP. I hate the thing and it hasn’t improved my sleep. I made a recording using Sleep As Android and I’m still snoring a bit. I am waiting to get an appointment with the actual specialist who ordered my sleep test and prescribed CPAP- I’ve never met him, and am not sure I ever would have met him if I hadn’t melted down a little when the ResMed drone said that my numbers are excellent and that “studies show” that most people adjust within six weeks. Well, I’m not a number, I’m a neurodivergent individual with individual needs and quoting study results at me does not help or reassure.

I’m so sorry for your loss. I keep fish, especially Betta fish, and I reached a point where I realised I’d have to accept their short lives because they bring me such joy. So I’ll just pass on what one of my friends often says: “May their memory always be for a blessing.”

My own parents were of the “you’re an adult, look after yourself” generation, and my parenting style was the opposite of what they did. My kids were told they’d always have a home with me, and I meant it. I didn’t foresee that they’d still be at home at 28 and 21 years of age with no chance of them moving out anytime…well, it’s starting to feel like they might be here for good. It feels like there can be no end to it, we live in a rural area and that means no jobs as well as no houses.

I won’t lie, I was looking forward to my kids being grown and gone (with loads of visits of course). I’m struggling a lot lately. I never have any privacy in my own house, I’m having to lay down the law about things like voice chatting in the living room. My kids ought to have more privacy too, I sympathise with their side of it too. My 21 year old is in a bloody box room, god knows it’s not easy for any of us.

I joined Beehaw because I was hoping for more of exactly what you posted here. Thank you. You’re also a bright, shining light and I am grateful that you’re here.

Not horrible, in general. The saga of the CPAP continues. Some nights I sleep well, some nights I don’t. I suppose I’m sort of getting used to it? Last night was not good so that’s colouring everything.

I saw a doctor who agreed to start me on post-menopausal HRT, as I have a family history of severe osteoporosis. I can think of about fifty other reasons I want to be on HRT, so I’m delighted.

My adult son and I made up from the huge fight we had last week, and I was able to come out of my room. The gist of the fight is that I need my adult kids to adult more than they do. I’m tired of managing the household. I know that in our location neither kid has the option of moving out (there’s a severe housing crisis and even if you find a place, rents are crazy expensive). I can live with that, but I can’t live with them doing nothing and leaving all the household chores to me like I’m the maid.

I’m really pleased to see people thinking about ableism and ableist language. It’s so easy to just say what you’ve always said without thought and I appreciate anyone who stops to think about it.

“Duh” is the word I’m personally trying to remove from my vocabulary. As I have ADHD and am forever losing or misplacing things, it pops out of my mouth automatically far too often. I only began thinking about it recently, and as I have a couple of neurology-based disabilities it really is not ideal for me to say something that’s insulting to people who are like me- by saying it, I’m putting myself down (internalised ableism) too!

“Lame” is tough because it replaces a whole lot of words. I do understand how difficult it is to replace it. I liked the suggestion of “bogus” (but didn’t want to hijack that person’s comment).

So someone stole some stolen items.

Don’t get me wrong, of course it’s important that items are kept safely and nobody gets to walk off with shiny things. But it’s a bit hypocritical, because the British Museum is full of things stolen from all over the world, they even have a page about it.

Still trying to come to terms with my new CPAP. I worked out a few bugs only to develop new ones. According to my smartwatch I’m still not staying in deep sleep for more than a minute or two at a time, and I’m absolutely exhausted. I’m hoping that it’s just that the CPAP works as intended but I’m not used to it yet, because I’m not going to get any help from the ResMed drone who gave it to me. I’m relying on YouTube for advice, which has been both helpful and worrying- my device is apparently an APAP and many of the YouTube experts hate them and even call them dangerous.

I also got a stomach virus late last week, which I’m still getting over, which isn’t conducive to good sleep. I had a massive fight with my adult son the day before I got sick, and then spent the weekend melting down from the sheer overwhelm of the exhaustion, illness, and emotional crap. I’ve been locked in my room since last Thursday and I’m not sure when it’ll be safe to emerge.

Thanks for that. Sadly, I’m far more likely to get useful information from the Internet than I am from my medical team. I actually turned to YouTube to “fill in” details the technician didn’t bother to tell me- namely that “mask leak” with a nasal pillow can be caused by opening your mouth. I also was able to work out, thanks to videos, that the nasal pillow I was told to use was a terrible fit for me, which is why I felt like I was suffocating and unable to breathe the first night, but the correct size was thankfully in the box. It’s been much smoother sailing since I swapped to the correct size pillow.

Thank you. Thank you. It really means more than you can imagine, I saw the little notification bell and thought for certain it was someone else disagreeing with me. I’m queer myself and very much an ally to everyone whose queerness is different to my own, and it hurt so much to learn that my diagnosis, to some, makes me less tolerable than a member of a hate group.

Unfortunately, when local professionals told me that autism is a disorder of childhood in which they are not trained, and therefore they will not see me, they are being very serious, not joking even in a dark and twisted way. My country has a kind of national health service and I happen to live in an area where there are no services of any kind for autistic adults. Once I am told “no, you can’t have an appointment, I don’t see autistic adults”, there is nowhere else to go.

Please understand that writing about my experience of autism in a Beehaw comment will necessarily give an extremely simplified and limited view of what my life is like. I’ve had similar discussions in the past where the other person either decided I was seeking advice or found a way to twist my experience to fit their beliefs, and I’m honestly not here for either- if I stop responding after this comment, that would probably be why. I also can only give a few examples without also writing a book.

I am hypersensitive to all kinds of things that non-disabled people can easily ignore. I cannot go anywhere where there might be harsh florescent lighting, sudden noises, flashing lights, loud music, or strong, invasive smells like perfume, because these things cause me literal pain. This means I can’t go shopping in a mall or pretty much anywhere else. I can’t go to any large gathering of people. In fact, I can rarely go outside at all, because you never know when you’re going to be confronted with someone who thinks the whole neighbourhood wants to hear their music. I suffer from severe emotional dysregulation that makes my life a living hell- I am 51 and I have regular meltdowns and attacks of rage. My behaviour is not “normal” for a woman of my age, and it causes me great distress and prevents me from living the life I want to live.

That is not to say that I would want to cure my autism. The fact is, I am attempting to get treatment for my sensory processing disorder but am fighting ableist anti-autistic attitudes from local health care professionals. I believe there needs to be some sort of place in the NT world for those of us who are totally overwhelmed by the NT world but also would like to not always be left out of everything.

If your argument is “you can’t be ableist against an autistic person because autism is not a disability”, we will have to agree to disagree, because my lived experience is that autism (for me) is disabling and ableism against the autistic is both real and disabling.

I also feel that reducing it to a simple language issue is negating that there are autistic folks (like me) who are disabled by aspects of their autism that are not related to failure to communicate with NDs. It’s good that your lived experience has been that autism is not disabling for you. My experience is different, and my experience still counts.