intractable disease | 難病
Added 2025-06-21 15:13:03 +0000 UTC※サポーター向けの記事を転載することを禁じます
*Reproduction of articles intended for supporters is prohibited.
サポーターの皆様こんにちは、lupusです。
前回の LUPU TALK から暫く間があいてしまいましたが、元気に過ごしています。皆さんはいかがお過ごしですか？
先日3連休を頂きましたが、そのうち2日を通院に費やしました😩
さて、わたしの疾患についてですが、大きく分けて2つあります。
所謂「難病」というものと、それに付随している「精神疾患」です。
一時期は介助なしでは日常生活を送れない状態に陥りましたが、今は定期的に検査をして注射や飲み薬で病気をコントロールしています。
症状はインフルエンザに罹っているような怠さと体の疲れやすさ、関節の痛みなどです。殆どが薬で抑えられていますが、月に数日は寝込む日があります。
元気な日々を大切に、有難く思いながら毎日生活しています。
難病と聞くと皆さんはどんなイメージを抱きますか？（是非コメントで教えてください😌）
コメントやいいねはわたしの心の支えになります。読んでくれてありがとうございました！また次回、元気にお会いしましょう。
Hello, everyone. This is lupus.
It's been a while since the last LUPU TALK, but I've been doing well.How have you been? I recently had a three-day weekend, but spent two of those days at the hospital 😩
Now, regarding my condition, there are two main categories. One is what is referred to as a “intractable disease,” and the other is a “mental illness” that accompanies it.
At one point, I was unable to live independently without assistance, but now I manage my condition through regular check-ups, injections, and medication.
The symptoms include a general feeling of fatigue and body aches similar to the flu, as well as joint pain.
Most of these symptoms are managed with medication, but there are a few days each month when I have to stay in bed.
I cherish each day of good health and am grateful for every moment. When you hear the term “intractable disease,” what comes to mind? (Please share your thoughts in the comments! 😌)
Your comments and likes are a great source of support for me. Thank you for reading! I look forward to seeing you again soon, full of energy!
inspection results | 検査結果
※サポーター向けの記事を転載することを禁じます *Reproduction of articles intended for supporters is prohibited. サポーターの皆様こんにちは、lupusです。 前回の記事で話をした腫瘍の検査結果が出ました。 腫瘍は良性であり、わたしはその腫瘍が出来やすい体質ということを主治医に教えてもらいました。 この腫瘍...
status update｜近況報告
こんにちは、lupusです。 いつも作品を見てくださりありがとうございます！ この「LUPU TALK」は、サポーターメンバー向けにlupusの個人的な話をまとめた記事です。わたしは元々身体が弱く病気がちなので、そういった話が中心になるかもしれません。 更新頻度は週に1回程度を予定しています。 Hello, this is lupus. Tha...
Comments
I see, that's helpful.
LUPUS
2025-06-28 04:54:57 +0000 UTCif I had lupus or something similar, I'd say I have either a chronic illness or a medical condition.
splun
2025-06-26 08:59:50 +0000 UTCIn English the more common term is “chronic” instead of “intractable”.
熊兄
2025-06-25 11:40:02 +0000 UTCThank you for your comment! When I'm not feeling well, I naturally sleep longer. When I can't sleep and just have to endure the pain, I listen to the radio. Even if I don't understand what's being said, just hearing people's voices makes me feel better psychologically.
LUPUS
2025-06-22 05:58:46 +0000 UTCコメントありがとうございます！そうだったんですね‥🥺 ただの風邪も、拗れて悪くなりやすいです。これからも本当に健康に注意して生活しようと思います😣
LUPUS
2025-06-22 05:52:54 +0000 UTCThank you very much. I still have many things I want to draw. I want to stay healthy and live a long life.
LUPUS
2025-06-22 05:48:45 +0000 UTCOh, I see. That's the first time I've heard that. What are intractable disease generally called in English-speaking countries? rare disease(希少疾患)?
LUPUS
2025-06-22 05:47:08 +0000 UTCI had an idea, but looking up and reading about being bedridden at certain times / on certain days reminded me of your earlier messages... Actually made me wonder, how do you spend your day fighting off boredom at such times? You have something to distract your mind?
S&B
2025-06-21 21:27:32 +0000 UTCこの病気のことは知っています。 私の友人もこの病気で若くして亡くなりました。 彼はもともとすごい絵師でした… 治療を頑張ってください！！
呆蹄
2025-06-21 19:00:25 +0000 UTCI know that lupus is a chronic illness that doesn't really have a cure, so I guess that's the meaning of "intractable". but like you say, it can be managed through medical treatment. I hope you can enjoy your daily life as much as possible with that treatment ❤️️
morrisdoe69
2025-06-21 18:06:50 +0000 UTCglad you're feeling well ☺️ the term "intractable disease" is unusual in english and sounds kind of scary to be honest. I found it interesting, when searching online, that the term is japanese in origin: 難病 (nanbyou).
splun
2025-06-21 15:52:15 +0000 UTC
