HN 上看到说一型糖尿病的, 原来这么艰难

https://news.ycombinator.com/item?id=30376777

现在一楼的评论:

I'm a type 1 diabetic, and this was a helpful post at showing non diabetics why it is so. hard. Non diabetics typically think the difficult thing must be the shots and the finger pricks, right? Not really. The majority of diabetics get used to those things quickly (of course there are some of course that deal with a major major needle phobia that can make it even harder). The hard part is that it never ends. Almost every moment of every day, your brain has a background process running that's evaluating every decision in context of your diabetes. There are no breaks. Your prefrontal cortex now has to take the place of a previously complex and automatic bodily process. It's the last thing you think about when you go to bed and it's the first thing you think about when you wake up. It's what you think about when you want to go on a walk, are about to enter a meeting, go into an interview, get on a plane, take a shower.

It's usually little things: "okay, where am I at now? which direction is it going? when did I last eat? do I have snacks ready? do I have enough insulin for the day? what if I start to go low during this meeting? should I pop some carbs and run high for this interview, so I don't risk a hypo partway through? why am I going low right now when I took the same dose I took yesterday for the same meal? why am I now skyrocketing for no discernible reason, I didn't even eat anything? shoot, I'm starting to hypo out of nowhere in the middle of this great conversation, which I now have to interrupt to eat a snack and recover for 15 minutes. I fell asleep with a perfect BG, but now I'm awake at 2AM half delirious because my BG fell all the way down to 50, and I'm in the kitchen shoving cookies down my throat because hypoglycemia activates a survival instinct to EAT EVERYTHING that's extremely hard to control, and I know that I'm gonna shoot all the way up to 250 shortly, which I'll have to treat with insulin, and I'm basically not going to get any sleep tonight".

And then the math often doesn't make any sense. There are so many factors that effect it. One day the same number of carbs + insulin may make you go high, and the next low, because of other environmental factors. (See the "42 factors that effect blood glucose" chart in the post.) You're constantly having to adjust.

I'm literally crying while writing this post, because it's so exhausting and it never ends.

Biwood

2022-02-18 13:53:39 +08:00

译文（用 DeepL 翻译）：

我是一名 1 型糖尿病患者，这是一篇很有帮助的文章，向非糖尿病患者展示了为什么它是如此困难。非糖尿病患者通常认为困难的事情一定是打针和扎手指，对吗？并非如此。大多数糖尿病患者很快就习惯了这些事情（当然也有一些人有严重的针头恐惧症，这可能会使其更加困难）。困难的部分是它永远不会结束。几乎每时每刻，你的大脑都有一个背景程序在运行，在你的糖尿病背景下评估每个决定。没有休息。你的前额叶皮层现在必须取代以前复杂和自动的身体过程。这是你睡觉时最后想到的事情，也是你醒来时首先想到的事情。当你想去散步、准备参加会议、进入面试、上飞机、洗澡时，你都会想到它。

这通常是一些小事。"我最后一次吃饭是什么时候，我准备好零食了吗，我今天的胰岛素够用吗，如果我在会议期间开始低血糖怎么办，我是否应该在面试时吃些碳水化合物并跑得高一些，这样我就不会有中途低血糖的风险？为什么我现在会出现低血糖，而我昨天吃了同样的剂量？为什么我现在会无缘无故地飙升，我甚至没有吃任何东西？该死的，我在这场精彩的谈话中突然开始低血糖，现在我不得不中断谈话，吃点东西，恢复 15 分钟。我以完美的血糖值入睡，但现在我在凌晨 2 点醒来，因为我的血糖值一路下降到 50 ，我在厨房里把饼干塞进喉咙里，因为低血糖激活了吃所有东西的生存本能，这是非常难以控制的，我知道我很快会一路上升到 250 ，我必须用胰岛素治疗，而且我今晚基本上不会得到任何睡眠。

然后，数学往往没有任何意义。有太多的因素影响它。有一天，同样数量的碳水化合物+胰岛素可能会使你的血糖升高，而下一次则会降低，因为有其他环境因素。(见文章中的 "影响血糖的 42 个因素 "图表）。你必须不断地进行调整。
我在写这篇文章时真的哭了，因为它是如此令人疲惫，而且永远不会结束。

conge

2022-02-18 16:04:59 +08:00

深有体会。
我虽然不是糖尿病。
但我有遗传的代谢病。
饮食上必须特别注意。
我的症状算是轻的，不必每天扎针吃药。
但我有的病友，那是每几个星期，就要去医院报道的。要么是病倒住院，要么是到医院把身体里的血都抽出来重新过滤一遍再输回去。
每天都担心会病倒。有点儿不舒服心里就打鼓，不知道是普通的不舒服，还是要病到住院的程度。
有时候疼了，就自己忍着，不愿意跟家人说，因为怕他们担心。
忍不住了必须去医院，心里都是愧疚的，因为心里想的是自己真没用，又给家人添麻烦，给家里经济状况增加困难。

对别人是美食的东西，对我们来说就是通往医院的快速通道。
偏偏人类的每个节日，不，即便不是节日，也时常找借口，人们都要拿我不能吃的食物来庆祝。

同事带给大家分享的食物，每次都得礼貌回绝。你给大家带的东西，基本上你自己也不能吃。

我用了好多年，才从不良心态中走出来，能直面我的状况。不再每天为自己的病而苦恼。

但，真的，很难。