rose ▪ bud ▪ thorn - october 2026 rose I had a great start studying for this semester :) I set up everything on the 4th: Downloaded all materials, signed up for all live sessions, put all dates in the calendar, ordered all books I need, and hit my reading goal all in one day, despite my struggles (aided by medication and lots of support from my wife). I was very consistent with it since! Went hard at the gym when I had painfree times in the middle of the month. Sent a care package filled with coffee, tea, baked cookies, and cat socks to a friend. I finally bought FFXIV and a subscription after spending ~330h in the Free Trial. Treated myself to nice stuff this month and going out more with my wife. I asked a matcha café in the city to please add allergen information to their order terminals and they did! I went to the Spiel convention in Essen. Got a good annual performance review, with lots to look forward to in the next few years, and applied for additional courses paid for by my employer. bud Learning how to deal with (or entirely avoid) food noise that has plagued me for years. It's going well. Working on a big blog post that still takes me a lot of time... it is draining... Planning a cool project with the Gazette people. The blog has been a bit quiet, but not forgotten. thorn Most of the month, I suffered with extreme exhaustion, fatigue and pain. Sleep was great and plenty, but I was still soooo tired all the time and could barely do or think anything. Dealt with a lotttt of burning pain in my bones, muscle weakness and pain, and under my skin as well as in my hips and lower back; standing was hard. It brought back wishes for a foldable wheelchair 1. These monthly posts made me realize there is always some short of illness stuff going on, and this month was especially bad, so next month I will switch medication. Goodbye, adalimumab. I made a mistake in my study plans and it affected my entire planning until the exams in March :/ I've been having issues with my main laptop and random restarts and kernel panics... may need to wipe and reinstall. My indoor spin bike broke and we haven't managed to fix it yet :( Time passed super fast. I blinked and it had been weeks between messages, emails, blog posts... I had to prioritize differently this month, but I hope I'm gonna be better next month. ☁️☁️☁️ pics Bear with Krobus, poor guy doesn't understand the game... Published 31 Oct, 2026 At the moment I have none for days like these, but I would love to have one so I am not bound to the home as much and my wife can at least push me on a walk or to the café, even when that is still exhausting; at least I could experience the outside without having to walk and having to sit down from exhaustion very soon. It would also save me from the barren wasteland that events and conventions usually are for seating. I'm aware that there is still a lot of stigma around using wheelchairs, walking sticks and the like, and there are still ignorant strangers out there who think you are faking it if you can get up from your wheelchair for a minute or so or don't need it literally all the time, but my comfort and mobility is honestly more important to me than the opinions of jackasses. I've wished for a wheelchair like that since I was just about 15 years old, for reference. Half my life. I just don't know where to get a lightweight, affordable, possibly secondhand one yet, because insurance wouldn't pay for that in this case.↩ https://blog.avas.space/rosebudthorn-oct26/ #bud #rose #thorn #freetrial #went #rss #feeds #linksharing #qwibbit

what does my pain feel like? Unfortunately, it seems like my medication (for Bechterew's disease and Crohn's disease) is no longer fully working. You can even go back and read it, seeing that in almost every monthly summary post on this blog has a mention of a flare up. It all seems like one little outlier, even to me, until you see that pattern emerge every month and become worse. Now October is my worst month yet, and my body is tearing itself apart again. I got an appointment at my rheumatologist soon, but until then, I get by with resting, pain meds, and Prednisone. Currently unfortunately off of that temporarily because I need to give my body a chance to develop an inflammatory response to the vaccine I got on Monday, so not only am I in an autoimmune illness flareup, I am also processing something that is supposed to make my immune system react. Great times. Next one is on the 12th, so I will be riding that rodeo a second time soon. It's kind of easy to simply talk about the symptoms vaguely (like joint pain), and I have done that a couple times on the blog. It's harder to describe the kinds of pain itself, or at least, harder to make people understand it and find equivalents that they can remember or empathize with. Many people go through life currently pain-free, or if there is pain, it is temporary or bearable. Once it resolves, they tend to forget how bad it was - from simply breaking a leg to surgery recovery or birth. Even just general infections are easy to move on from. When other people are down with the flu, they (hopefully) stay home until they feel better and more or less accept nothing else can be done until they're better. This is many people's only reference to being really sick; a little downtime for a week or two, with a predictable end. But with chronically ill people, you just never know when it will be better again (and how much), it's all random. Still, life has to continue somehow. You can't just drop everything every time. Imagine you got the flu every 3 weeks for a week: What employment, education or social life would work under that aspect? You'd have to work through it somehow, even if it's a reduced version of what you usually do. Unfortunately, that means people see me drop (almost) nothing during a bad flare up (meaning: I still work, study, volunteer, blog etc.) and still try to show up everywhere, and it understandably doesn't register under how much strain that happens and that I am probably unusable the next day. When I try hard one day despite currently having a bad time, I take my health and energy from the future days to make that work. So how can I best describe the pain and experience more deeply? I'll take some of my recent days as an example. On the day the recent bout really kicked off, I developed severe pain on the way to the office. I was fine prior, but it simply started then. I sat in the tram, and could suddenly feel everything burning. Bones, muscles, skin. Felt like there were razor blades embedded in my flesh. No comfortable position, even just sitting and breathing became exhausting. I couldn't even hold my phone up anymore because I was suddenly very weak. Not just exhausted, or sore muscles as if it's the next day after a hard training, but instead the same feeling as if you could not hold up a plank or curl a dumbbell anymore. My arm muscles were depleted with just less than a minute of holding something very light up, in a way that's usually not a problem when I feel well. I could watch my hand and arm slowly sink to my lap. There are also these bouts of feeling as if I was extremely thirsty, but I am not, and drinking doesn't make this feeling go away, it's just very very similar, and only for a few seconds at a time; a strong yearning while everything inside me seems to squeeze together because of the pain and inflammation. I experience the most pain in my limbs and ribs, and especially in the major joints (wrists, ankles, knees etc.). It's similar to the sort of pain in their extremities and general malaise people feel when coming down with an infection. The pain spread all over the body is constant burning for about 6-7 on the scale, with varying focus areas that are a good 8 or 9 of either pulsating or stabbing pain. With focus areas, I mean things my body just seems to focus on especially hard that day or entire time of the flare up; could be an inflamed neck, or the base joint of my thumb, or my sacroiliac joints. Inflamed neck is really annoying, because you really start to notice how many times you need to turn your head every day (crossing the street especially!), and mine is stiff when that happens, plus my head is slightly tilted and I cannot fully straighten it. Due to swelling, it also feels as if there is something inbetween the vertebrae that I need to massage or stretch away, an overwhelming urge to get it out, to crack the spine there. Anything to make that discomfort go away, that feeling that it's not properly fitting on top of each other. That just makes it worse, so I really need to be disciplined and just keep it still and wait for it to pass. The last time I had it almost made me lose my mind as any and all positions put enough pressure on it (pillow or gravity from being upright) that caused immense amount of pain and I could barely function at a desk. Glad that's over. Sacroiliac joint pain tends to happen only on one side at a time for me, alternating sides. It's pain between your spine and hips, the very low area down your back where they meet, and unfortunately there is no relief when it hurts aside from meds; sitting, standing, lying down all hurt equally, a strong searing pain that cuts through anything and that I can't distract myself from. It can radiate down my thighs and into the buttocks or up the back. Sometimes when it's bad and I walk, the pain shoots down the leg when I put weight on it and it just gives out, which is a bit scary, but I haven't fallen yet. When I move after being inactive for a while, especially getting up from anything like a chair or sofa, you can usually hear it crack loudly, even during healthy times. On top of all that, there is also a (I assume partly psychosomatic) wandering type of pain. For example, one minute the center of my right wrist is pulsating with pain, then it fades away. Then 20 seconds later a hand-sized patch of skin on my thigh hurts, then 10 minutes later all the middle joints of my toes hurt, before it moves on to my shoulder and my left pinky finger soon after. This isn't a fixed routine or anything... time, order and place is just completely random, is what I am trying to illustrate. These really happen like that. I can just flinch from my finger randomly feeling like it's being stabbed. You can also sometimes see my fingers twitch, especially the thumb, when my wrist is acting up, or see muscles contract involuntarily under the skin in my palm (the flexor pollicis brevis especially, if you are curious). If my intestines trouble me, it's the typical Crohn's disease spot, the ileocecal valve, where the small and large intestine meet. When it's actively inflamed, it feels like a huge wound, as if a big area there is scratched open with a fork, and it's a pulsating sort of pain. I have the urge to hold my hand there from the outside, and shield it away and double over as if I was stabbed. I may not be able to even stand straight. When it's not currently inflamed, it might still hurt occasionally because the area is a bit scarred and not as stretchy and wide as healthy tissue, so if contents of the intestine pass the area, it's very tight and the shape or amount may be a bit much. It helps when I massage it. At the same time, I feel really really exhausted and tired, as if I ran a new personal best, and I am pretty much spent when coming home from the office. Also very hungry because my body seems to do something really exhausting and needs energy, even when I'm actually just lying around somewhere. Temperature control is also all over the place, but often too warm. I re-develop eczema on some known spots, or develop new ones. I am suddenly reactive to specific food, especially histamine-rich foods, so I have to avoid or reduce them again. Old allergies come back. I am itchy on my entire body, and randomly develop itchy welts during the day that just come and go all over the place as they please. Some spots itch so badly, I scratch until I bleed or there is a huge patch of the first layer of skin missing. I get acid reflux from literally anything. When my meds work, not only am I not in pain, but also all of these symptoms no longer appear and I can eat what I want and am not itchy. During a flare up, all of that is happening at the same time, constantly, sometimes more in the foreground or the background depending if I can currently focus on something else or not. With some episodes, like right now, it is just constant background discomfort I can somewhat work through. Kinda feels like sitting in a vat of acid, but it's not strong enough to eat my flesh, just enough to hurt. I'm sometimes distracted by something else suddenly hurting. I feel like my output is diminished, but I can still do stuff. I just do it a little worse, or slower. Right now as I am typing this, my lower arms and the top of my feet hurt the most, aside from the overall pain. Other times, the pain and inflammation is so bad I can't think, or form words, or find the correct words. I forget what I was trying to say. Saying a single sentence can take a long time, and I may not even finish it. I'm just existing and writhing somewhere while lying down and waiting for it to be over or for meds to kick in. That's when I am completely dependent on my wife and can't do anything for myself. If there is an absolutely catastrophic flareup, the inflammation can get so bad that I physically cannot move; for example, in 2024, my hands and shoulders were so inflamed that I could neither really grab/hold something, nor raise my arms enough to get dressed by myself. Overall, mornings are initially bad because I am stiff and the pain starts up massively while slowly waking up. It gets better during the day, and then past 8pm, I slowly worsen again. Stress, illness, and other factors affect this, of course. But that may be the reason why I am fine at 1pm, and then have to cancel for something later that day. Oh, and for the weekly injections: I'd describe them about 3x as bad as vaccine shots. It doesn't get any easier, and every time I have to force myself because I know the pain that's coming. Sometimes I get lucky and it barely hurts, but lately it's been nothing but intense pain for every injection. What are some signs that I have a bad time? I am much more focused on sitting down, and I can't stand for long. If we are on the go, I am always on the lookout for seating, I have to take frequent breaks sitting down, and I ask how long until the next seating opportunity arrives. I start massaging my lower back, stretch from left to right while sitting, or start folding over and stretching by touching my toes with my hands (when I start doing that, it's usually game over soon and I need to go home). When you see me look at my hands and I quickly open and close them or massage them, obviously my hands hurt. If at home, I lie down every other hour or so. I sometimes lie down on the office floor (yes). When I sit somewhere, it looks more like I passed out there, like a potato sack. I'm more moody, even less patient, and meaner, more sensitive to sounds and touch. I am checked out of conversations and just stare emptily. If I can, I retreat to a soft surface and nap. I'm constantly tired. I take more baths than usual because the heat helps. I'm worse with timely replies, I take longer for tasks, I put off more exhausting and time-consuming tasks. If any of this sounds familiar to you, it's time to talk to a doctor. Not everyone experiences this, it's not normal or healthy. When my meds work, I don't have any of this and feel like a healthy person. If you focus on a specific body part right now (maybe during a body scan, meditation, awareness exercises etc.), does it hurt or do you feel nothing? Try it with your hands, your feet. For the longest time, I was convinced it was normal that the second I focused on any body part, it felt painful and burning. I thought that happened because focusing on it made the nerves hyperaware or something, feeling pain that wasn't there; imagining it, basically. The truth is that my brain was just getting really used to that pain all the time and shoved it to the back of my mind so I could function, which meant it only became really noticeable in a flare up, or when I focused on how I felt, or needed to actually be present in my body. When my meds work and I focus on any body part, I feel absolutely nothing. When I am in a flare up, meditation and body scans are a complete torture. If you feel discomfort and pain when you let yourself feel your body, you need to seek help. Published 28 Oct, 2026 https://blog.avas.space/my-pain/ #pain #like #even #unfortunately #currently #still #crohn #rss #feeds #linksharing #qwibbit

my ffxiv character It's been more quiet here because I've had increased health issues, and have been focusing more on other things, especially my degree and gaming! I have some unfinished drafts, but they'll release some other time soon :) Same with emails! I've been playing FFXIV since end of June, and just started Shadowbringers. I love the game, and recently had some fun with the integrated photomode (group pose). Just wanted to share some shots from that here. She's kinda a mix of my real life self and the Au Ra race ingame! That's all 8) Published 25 Oct, 2026 https://blog.avas.space/ffxiv/ #ffxiv #june #shadowbringers #oct #rss #feeds #linksharing #qwibbit

a (temporary) win for meta glasses in the classroom A student in Vienna, Austria has recently made the news because he has refused to stop using his Meta smart glasses at school, causing a legal dispute, and - to the surprise and outrage of many - actually preventing his expulsion. For now, he is allowed to keep wearing them and attend school until a solution is found. Why is that? I've looked at the relevant court case documents (the interim procedural ruling W224 2346501-1) and the (final) substantive judgment W224 2346501-1 on RIS) to get the facts for the case and to try and understand the justifications for this decision. the facts The student started wearing the smart glasses in December 2025. News articles allege that within days of students complaining about the glasses, the school amended their house rules to forbid the glasses, yet he kept wearing them. After repeatedly failing to adhere to the teachers' requests to stop using the glasses, he was excluded from school for multiple weeks (16th to 23rd of March, 27th March to 24th April, and 27th April to 22nd of May respectively) as a disciplinary measure. The teachers and students cited fears of secret recordings as reason for their requests. The student still didn't comply. Aside from the issue with his smart glasses, the student was caught doing audio recordings with his phone in April 2026, refusing to stop the recording when asked to do so. Later on, he refused to prove that he didn't save the recording or that the recording was deleted. Beginning of June 2026, the school conference applied for the student's expulsion, which was approved by the Vienna Education Directorate on June 12th, taking effect immediately, despite an appeal. The parents of the student appealed this decision, and the Directorate handed the case to the Austrian Federal Administrative Court. the result In July 2026, the court upheld the appeal against the immediate enforcement of the exclusion in its preliminary ruling, suspending the immediate expulsion in the meantime. The student is permitted to attend class, where he will presumably wear his glasses again. A big part of the decision were the conclusions a pedagogical assessment came to, which stated that there was no sufficiently substantiated immediate danger in the student wearing the smart glasses. The Directorate had referred to a continuing risk to the physical safety and moral welfare of other students and people at the school if the student were allowed to keep using the glasses as a reason for the expulsion. Unfortunately, the court instead considered this an abstract assessment of risk, rather than a sufficiently specific explanation of why immediate expulsion was necessary. Second, the assessment contained no evidence that the student had recorded other people, as teachers and students only had moments of suspicion, not actual proof he had recorded anyone (with the glasses, at least). The court decided that suspicion of recording alone was insufficient for the immediate expulsion. Third, it wasn't clear enough to the court why the school had waited so long if it considered the risks to be so severe. The Directorate had not adequately explained why the same circumstances now constituted an acute danger requiring immediate enforcement. These points are why the court found the parents' appeal against immediate enforcement to be justified. Basically, the first document focuses more on the immediacy with which the school suddenly wanted to expel the student plus whether the suspensive effect is granted or not, whereas the final document focuses more on whether the way the student used the glasses already fulfills legal grounds for an expulsion in general. They found that it does not. In the second publication from August, the court overall reiterates its earlier decision and shares a little more details from the pedagogical assessment. It reveals that there are also unanswered questions around medical necessity of the glasses, and the student's ADHD diagnosis (but these are neither the point of the decision nor this blog post, so we shall skip that). important caveats and nuance The news about this case usually underline the fact that the student somehow "won" and is now allowed to just keep wearing them. That's cutting it a bit short for clickbait reasons. The court decisions expressly state that its rulings on the suspensive effect against the expulsion and whether the behavior fulfills ground for expulsion does not actually decide anything on the legality of smart glasses in classes or anything about how valid or not valid certain privacy concerns are. Under Austrian administrative procedural law, an authority seeking to exclude the suspensive effect of an appeal (which they did here - they denied the appeal of the parents, which would have normally suspended the decision, and went for immediate enforcement) must justify why this immediate enforcement is urgently necessary, taking account of the interests of all parties involved. Kids and teens have a big interest in continuing school and are required to be there, which is why a lot of importance is placed on not excluding any student willy-nilly. § 49 of the Austrian School Education Act (Schulunterrichtsgesetz, SchUG) requires a serious breach of student duties, with the relevant educational or house-rule measures having failed, or a continuing danger. The existence of a public interest in school safety does not, by itself, establish that immediate enforcement is required, and a potential privacy risk isn't automatically be treated as proof of misconduct that fulfills the standards of § 49 SchUG. Related: Austria also has a Schulordnung that deals with tech use at school, specifically smartphones, smartwatches and similar, in § 7(6), (7) and (8). It's unclear how old the student is, as the limit only applies to people below the 9th grade, but it at least gives grounds to see the use of smart glasses as analogous to what has been banned here for a portion of students already, so it is not as huge of a jump to possibly ban smart glasses at school entirely at some point. However, the court decision is explicitly not an endorsement of the student's conduct. So for now, the case actually doesn't support a view that students have an unconditional right to wear smart glasses during lessons, or that schools are prohibited from restricting smart glasses. Thankfully! the future So what's the path forward? A revision of the court decision is not possible. The school, as previously mentioned, had already had revised its rules, but that doesn't help when a student repeatedly doesn't comply and his infraction isn't deemed grave enough to allow for an expulsion. Other disciplinary measures have yielded no results. News report that the student is now socially shunned in school, but not even that is deterring him. He has the court decision printed out and shows it to anyone challenging him to take the glasses off. Austria's Ministry of Education is allegedly examining a possible general prohibition on smart glasses and similar devices in schools both due to privacy concerns and cheating in exams. I am not sure how this could weigh heavier than the school's house-wide rules, but it may give schools more of a justification in their disciplinary measures. my opinion The school is put in a difficult situation in which it needs to protect the rights of students and staff, yet is in no position to gather the required evidence to successfully argue for an expulsion. Schools are not allowed to check the devices of students and acquire any material, and therefore rely on students to voluntarily relay any evidence. But what student will incriminate themselves, especially when you want to keep doing what you do? It's especially frustrating here because the student himself has been caught recording with a different device before, showing he is capable of doing this. The behavior being caught on a phone and not the glasses was his saving grace. As no (proven or otherwise) crime has occurred, it's not like there is anything warranting police to confiscate the device and search for evidence. This may be the case when another student has enough evidence to suggest that they were recorded (maybe in a sensitive space like the school toilet or a changing room) and is reporting it to the police or otherwise pressing charges, depending on case and legal options. Though I don't think this would realistically be pursued successfully by any cop.... I empathize deeply with the staff and students. They have to tolerate this now until further developments, and it's unclear what those may be and if they would help getting this creep to comply. Smartphones have already added a sense of surveillance to the school, in the sense that things could be recorded and uploaded for millions of strangers online to see and ridicule. Now, this covert recording is easier than ever and adds to the chilling effects. They also have to deal with possibly unfair advantages during exams, as the student will likely keep arguing for medical necessity because he needs glasses to see and seemingly cannot be convinced to stop the use or exchange it for normal glasses. Especially as a woman, it frightens me. Lots of people, but especially anyone who went through puberty as a girl, can probably attest to the extreme casual sexual cruelty that teenage boys are capable of and so often employ against the girls in their class. In their position, I would be extra scared of any recordings that could amount to zooming in on their breasts and butts, or amount to upskirting, or any pictures that then later are used to nudify via AI. I have had partially nude pictures of me leaked at my school when I was 15, so I don't have to imagine - I know how it feels. I am also mad when I think back to how dress codes and school uniforms were handled when I was still in school. It was common to have rules around cleavage, shoulders, bra straps, length of skirts and shorts, the midriff, etc. or have school clothing that complied with these standards. My school employed a dress code, and I regularly violated it. I was either sent home or stuck into a shirt that was supposed to shame me for it. It was a confusing time. You quickly realize that these rules do not apply to boys, and that basically anything you could buy at stores for your age group and gender actually violated the dress code (especially the time when hotpants were in). I was advertised to with these non-compliant clothes; I was expected to wear them to be cool and pretty and have any worth as a woman, I was supposed to want them and buy them, yet at school we were treated as temptresses, as vulgar, unclean, pornographic, sexual. Something to be hidden away, something that doesn't deserve any expression or comfort, no matter how hot it got outside. The issue was always deemed to be us, not the male teachers or students lusting after us. It instills a sort of shame into you that is very, very hard to get rid of. Yet here we are, someone can just refuse to take off the Meta glasses, an actual real threat to people's rights and comfort, and everyone is apparently ultimately powerless to stop it! The double standards deeply irk me. The parents are also obviously failing their son. They give him a controversial toy without ensuring the appropriate handling of it and setting some ground rules. They know their child has ADHD, yet give him a device that easily lets him be distracted during class. They know something has to change, yet all they care for is keeping their child in school, and they aren't confiscating the glasses despite their child missing school over it, threatening his education and future prospects. They seem to accept that they have helped their son become a complete social pariah in his most formative social years. What a shame. A ruined teenhood, a risk to education, a threat to students and staff, court costs... for what? To make Mark Zuckerberg more rich and influential. It's not worth it. Published 11 Oct, 2026 https://blog.avas.space/smart-glasses-school/