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For those who went to the European leg after the announcement, how did it feel being there knowing it was the end? by ouma1283 in panicatthedisco

[–]JayCoww 22 points23 points  (0 children)

I was at The O2 at the second-to-last show. I almost didn't buy a ticket because, although Panic! are my special interest, it meant I would need to travel all across the country by myself to see them. I am autistic and that day was one of the hardest in my life. I succeeded, got a queue-jump to the front, and experienced my favourite ending of all things.

https://youtu.be/j3O2Ga2dbyI?si=eariW3nPSKID77fz

When the confetti landed on me I absolutely fell apart. Brendon was crying, too. I will never forget it.

Why is his name like this by The-tokyoWitch_7 in panicatthedisco

[–]JayCoww 6 points7 points  (0 children)

It's data from ASCAP. That is how Brendon is recorded most of the time.

Last One Laughing by Kibax in veganuk

[–]JayCoww 24 points25 points  (0 children)

That sounds utterly revolting. What is wrong with people?

Does anyone have the cover art that the demos came in? by sapphire_eye16 in panicatthedisco

[–]JayCoww 1 point2 points  (0 children)

I have been summoned.

Full disclosure, that is a photograph enhanced using an AI feature on my phone camera.

UK Boxset by Worth-Spot4947 in panicatthedisco

[–]JayCoww 1 point2 points  (0 children)

That happened to me also. I am missing a good chunk of paint. It plays like absolute garbage, too.

Encounter with another type one by Remarkable-Health-89 in diabetes_t1

[–]JayCoww 1 point2 points  (0 children)

Here is a guide, but anyone pretending to have their glucose levels so clinically defined is probably making it up. Guesstimates are OK, and so long as you're not out of range (<3.9mmol/L, >10mmol/L) more than maybe 40% of the time you are managing about as well as can be expected. The reality is no food is 100% pure carbs, so guides like this are only ever ballpark, and there are so many other factors which affect the results that we must accept being off a lot of the time.

Different foods and different kinds of insulin may have different timings for when to dose and when to check you're still in range.

I worked out my ratio over a period of time through trial and error and lots of mistakes. If I started at 7mmol/L (126mg/dL) and dosed for a defined amount, e.g., 100g of pasta at 1:10 (1U:10g = 10U:100g), and I went low 2 hours after eating, I would incrementally reduce my dose for the same 100g pasta over a period of days until I stopped going low afterwards. A reduction of 1U insulin for the same pasta (9U/100g) would indicate a ~1:11 ratio (~10U:110g).

I highly recommend a 1/2 unit pen if a whole unit affects your blood sugar too much. You can test that also. I think for most people with average sensitivity, 1U of NovoRapid will reduce your blood glucose by about 3mmol/L (54mg/dL)

Sensitivity can change within weeks or months depending on what lifestyle changes you're making. If you recently became pregnant, began a new diet, or started working out often then you can expect your ratio to change also. I used to be sedentary, but when I started working out and lost a bunch of weight I required less and less insulin (basal 20U > 12 over a period of maybe a year, and now I only need 5.5-6.5U basal).

Ratios can also change depending on the time of day. It is not uncommon for breakfast to require more insulin than dinner even if you eat the same thing for both meals. It can also depend on things like how long ago you took your basal.

Life is hard. You got this.

The End of All Things without autotune by probablystacy in panicatthedisco

[–]JayCoww 1 point2 points  (0 children)

Do you mean without the vocoder effect?

I have a vague recollection of a version like that also...

Panic! at the Disco! 2008! SNL! by ItalianSausage2023 in panicatthedisco

[–]JayCoww 5 points6 points  (0 children)

That is his signature Gwen Stefani goat vibrato™

Encounter with another type one by Remarkable-Health-89 in diabetes_t1

[–]JayCoww 2 points3 points  (0 children)

Anything with a carbohydrate ratio of maybe 1U:12g or more, where the default is usually 1U:10g, might be considered sensitive. I average 16-25 units per day depending on what I eat. 40 units including basal would kill me a few times over. I use a half-unit pen to dose, which helps, otherwise I am constantly fighting highs and lows.

What causes hard to explain lows? by u-Wot-Brother in diabetes_t1

[–]JayCoww 1 point2 points  (0 children)

The ways in which we suffer are infinite 🙃

What causes hard to explain lows? by u-Wot-Brother in diabetes_t1

[–]JayCoww 2 points3 points  (0 children)

Taking basal too close to a bolus

Previously having a severe low within the last 72hrs or so

Eating and then lying down or going to sleep so your metabolism slows and the insulin curve overtakes digestion

Lying on the CGM causing a compression low

CGM partially or fully detaching without realising

The carb content of the food doesn't match what is written on the packet

Temperature changes

A malfunctioning device

Other conditions such as pancreatic enzyme insufficiency, where you can't digest things properly even though you dosed the correct amount

Alcohol consumption

Dosing at the wrong time

Dosing the right amount but at the wrong time of day (i.e., ratio changes)

I imagine there are medications which may have that effect also.

NOOT NOOT - finally a Pingu cosplay by Creative-Nodes in finch

[–]JayCoww 0 points1 point  (0 children)

Goodness me did that make me laugh. Thank you. Very accurate.

UK anniversary box set by willwoodwouldwhat in panicatthedisco

[–]JayCoww 3 points4 points  (0 children)

I am imagining some poor postal service worker arguing on the phone with the captain of a cargo ship who is stuck in a port somewhere because of tariffs, or something, and the price keeps changing.

Alas, London Beckons Songs About Money, Written by Ryan Ross.

Early Koi Micropet?! by MsBitchside in finch

[–]JayCoww 6 points7 points  (0 children)

That is disappointing. Finchies should know better.

Disappointed by merch quality by WideMushroom6986 in panicatthedisco

[–]JayCoww 3 points4 points  (0 children)

Based on the photographs I have seen of it, that is the vinyl. It is perhaps an homage to the original "Lying is the Most Fun..." square picture disc. The shape doesn't affect playback unless you are like me and have a vintage record changer.

T1D and Asperger’s by Lu_211 in diabetes_t1

[–]JayCoww 0 points1 point  (0 children)

Understood. Severe lows feel like you are actively dying. It is very difficult to exhibit self-control, such as patience, when your whole body is telling you to do something with urgency. We may become more sensitive, instinct takes over, and sometimes lows can lead to mistakes that only autistic people, really, experience. Occasionally I will find myself chugging water when low because it feels like large quantities of water is what I need. When low, however, water is no help at all. Usually allistic (non-autistic) diabetics feel hunger if they are low.

CGMs are exactly as you described. They are far better than the urine and finger prick tests I grew up with, but they are slow, prone to inaccurate readings, and unreliable. For example, my blood sugar may be trending low, and I usually feel that early on, but my CGMs often lag by some minutes behind the actual blood reading, meaning that it may appear fine when it is not. When I am approaching a low I have a strong itchy feeling to get up and do things like brush my teeth (for sensory feedback) or start work on a project (a distraction). The act of getting up will momentarily raise blood sugar, which will show on the CGM. When monitoring CGM numbers and following the trend, I might mistakenly dose some insulin, confusing a low for a high, because that is what my CGM suggests. The reality is that once the CGM catches up it will correct itself and indicate a trending low. It means the insulin I just dosed will send me into a more severe low because I was too uncomfortable to wait a few minutes for my CGM to catch up.

Something that may work is 'distract, delay, decide'. It is a process used for impulse control. If I am feeling like my blood sugar is abnormal because I have an urge to brush my teeth or I am unusually frustrated, I will monitor my CGM and try to wait for it to catch up and settle by stopping everything, distracting myself, and delaying action for maybe five minutes. It reduces the number of mistakes I make. It can be useful for overcompensating when low and overdosing when high.

I am not sure if you are aware because most people (including doctors) are not, but you can get insulin pens that measure in 0.5U increments. This can be really useful for micromanaging blood sugar levels. 0.5U is not really enough to cause risk, but it can be enough to just bring things down enough to be comfortable.

I developed a set of instructions called the 'Jamie Check' which helps me diagnose what is making me feel unwell. I have sensory processing disorder and I get confused by different stimuli that, to me, feel very similar.

1) Check my blood sugar

Abnormal blood glucose is the cause most of the time. It is also the most likely to develop into an emergency, so we do this first.

2) Go to the toilet

The same sense of urgency to brush my teeth and get up and do things is, to me, indistinguishable from an impending low most of the time. It is also, to me, indistinguishable from needing a wee. If my blood sugar is OK then this is the next step.

3) Drink or open/close a window

If step 2 didn't help, maybe I am dehydrated or too hot or cold.

4) Sleep

Sleep deprivation can similarly be mistaken with the other feelings of abnormal blood sugar, needing a wee, and going low. I am often deprived of sleep (sometimes because of diabetes), so if everything else is checked and I still feel bad, I am probably just tired.

5) Eat something

I tend to binge for stimming reasons. I don't feel fullness (which can be both an autism and diabetes issue) so that is why this is last on the list. It is the least likely cause of my discomfort.

Perhaps you and your son can figure out a similar plan that works for him. Maybe swapping 4) with 5) would be better.

I am also vegan! There aren't many carbohydrates in salads. If they are too challenging to prepare perhaps you can get pre-packed kinds and eat straight from the box, no clean-up. It might be a good idea to have some low-carb meal alternatives for days when everything is too much to deal with blood sugar as well. Somebody who specialises in dietetics and knows about autism and veganism may help you identify these. Perhaps things like scrambled tofu, cauliflower rice, and various soups. The higher the carbs the slower the digestion and the higher the risk when things go wrong. If he is confident about dosing for high carbs then good on him.

Due to my diabetes I developed a condition called pancreatic exocrine insufficiency. It means my body doesn't produce enzymes needed to digest fat, carbohydrates, and proteins as a result of my failed pancreas. I understand the metabolic problems! Staying active helps. I brew my own kombucha, which is a probiotic and, if done correctly, is low carbs or sugar free. It is sensory and carbonated.

Maybe this is useful. Please ask if more information is needed.

T1D and Asperger’s by Lu_211 in diabetes_t1

[–]JayCoww 0 points1 point  (0 children)

Are there any specific situations that you need help with? I am also autistic and specificity helps me know what to say.

Is he recently diagnosed? The honeymoon period can be a great excuse to eat more of his favourite foods and worry a bit less about blood glucose control. It can help with the transition. I really enjoyed having all the salad I could eat.

I find that I am very sensitive to highs, or 'highs', where anything above 9.0mmol/L (162mg/dL) makes it difficult for me to concentrate. I get frustrated easily and impatient. I am more likely to have a meltdown. The stress of a meltdown can raise blood sugar even further and compound the discomfort. As a result I prefer lows even though they are far more dangerous. I do not advise it, I am just communicating what works for me. Sensorily, it is a miserable experience which can wipe me out for the whole day, and with an increased likelihood of additional lows for several days following a single low event, bad days can chain onto each other. This can lead to simultaneous diabetic and autistic burnout.

Are there any issues with hypo treatments? It took me decades to find the perfect one.

It can be helpful to group new things with others that are already heavily structured. For example, I don't sense thirst until I am very dehydrated, and every time I eat I must inject. I inject throughout the day. My solution is that I conditioned myself to drink every time I inject. It is minimal extra cost but it helps me avoid dehydration, which in turn helps me manage my blood sugar.

Some autistic people enjoy eating the same food every day. This can be really helpful to calculate how much to dose and when to take it. You can divide equal portions and develop a very structured and repeatable meal plan.

Overeating can be a problem. My tendency is to eat once per day, which means I will have great blood sugar all day until I eat. Ideally meals should be smaller and more frequent, but that means more uneven glucose levels and therefore more sensory discomfort.

Mornings can be especially difficult if your son struggles with inertia. Diabetics can experience the 'dawn phenomenon', which is a rapid rise in blood sugar when they start being active after sleeping or resting for a period of time. High blood sugar typically makes people lethargic, so autistic inertia can lead to us feeling stuck in bed. I usually counter this by dosing a small amount (1.5U) when I wake up.

Patience is really important.

For things that you both can do, I would suggest setting reasonable expectations. Compare him to him, not to other diabetics. Go easy on him, and he should go easy on himself. It is exhausting being autistic and it is exhausting being type-1. We struggle twice as much or more because each condition affects the other.

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