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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!



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Comments

splun

glad 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).

morrisdoe69

I 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 ❤️️

呆蹄

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!!

S&B

I 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?

中嶋るぷす

Oh, 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)?

中嶋るぷす

Thank you very much. I still have many things I want to draw. I want to stay healthy and live a long life.

中嶋るぷす

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😣

中嶋るぷす

Thank 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.

熊兄

In English the more common term is “chronic” instead of “intractable”.

splun

if I had lupus or something similar, I'd say I have either a chronic illness or a medical condition.