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I deal with chronic, severe fatigue due to 2 rare immune-mediated neurological diseases affecting my peripheral nervous system. This is what generally helped me

I deal with chronic, severe fatigue due to 2 rare immune-mediated neurological diseases affecting my peripheral nervous system. This is what generally helped me manage my fatigue: The ultimate resource for dealing with fatigue is the book called "Energityvene" ("Energy Thieves") [1] which is only printed in Norwegian. It covers pretty much every single fathomable situation in terms of people dealing with fatigue, such as disabled people and high-performing professionals. It covers all types of fatigue, whether it be physical or mental. Most importantly, it gives actionable solutions for all of the above categories for people in various situations. Unfortunately, this is the only source that covers it from A to Z. The book helped me tremendously and was life changing. I found it by searching across the web, using key words, and found a bunch of useful Norwegian PDFs, such as these [2][3]. Since it was mostly all related to a book in Norwegian, I found a bookstore that sold an eBook version of "Energityvene". I converted the book to a .docx file using Calibre [4], and then I uploaded it to IBM Watson Language Translator [5], and had the .docx translated to English. I then read it and it changed my life. Also, chronobiology [6] is a big deal and makes a huge difference, if you understand it and study it. Knowing your chronotype (circadian rhythm pattern) and calibrating your life around it makes a huge difference. Here are a bunch of useful PDFs about chronobiology [7]. Interestingly, I use light therapy (different sorts of therapeutic lighting) calibrated around the time of day, for my chronotype, to manage my energy levels consistently, so my circadian rhythm stays the same. So, I use a wake-up light (to wake up in the morning), a special light at my desk (mid-day), a sundown lamp (during dusk/evening), and night-time lighting (no bright lights). I monitor the light levels I am exposed to throughout the day (lux levels) so it is a precise and prescriptive amount of light. With respect to finding your chronotype, you may need an actigraph watch to determine your chronotype. The Geneactiv actigraph watch does this, and also measures your lighting levels [8]. It costs around $200. You also need to practice resting, just as hard as you work. Figuring out how to do that is hard if you have a strong type A personality, but you can do it. Be creative. Sleep is critical, and is unfortunately extremely underrated. I also record my sleep every night with an OpenBCI EEG recorder [9], using 16 channels. It is effectively a home sleep lab [10]. When I wake up in the morning I run scripts (mostly from GitHub) to see how well I slept, and also to see the sleep staging patterns. This also helps me see if I am going to get out of my circadian rhythm. [1] Energityvene: https://www.goodreads.com/book/show/34138256-energityvene https://www.goodreads.com/book/show/34138256-energityvene [2] DuckDuckGo Search-filetype:pdf "Energityvene": https://duckduckgo.com/?q=+filetype%3Apdf+%22Energityvene%22&t=ffab&ia=web https://duckduckgo.com/?q=+filetype%3Apdf+%22Energityvene%22... [3] DuckDuckGo Search-filetype:pdf "Energityvene" site:kognitiv.no: https://duckduckgo.com/?q=filetype%3Apdf+%22Energityvene%22+site%3Akognitiv.no&t=ffab&ia=web https://duckduckgo.com/?q=filetype%3Apdf+%22Energityvene%22+... [4] Calibre (Software): https://calibre-ebook.com/ https://calibre-ebook.com/ [5] IBM Watson Language Translation, Translating Documents Information: https://cloud.ibm.com/docs/language-translator?topic=language-translator-document-translator-tutorial https://cloud.ibm.com/docs/language-translator?topic=languag... [6] Chronobiology Information: http://www.chronobiology.ch/ http://www.chronobiology.ch/ [7] Peer-Reviewed Chronobiology Journal Articles: https://duckduckgo.com/?q=site%3Achronobiology.ch+filetype%3Apdf&t=ffab&ia=web https://duckduckgo.com/?q=site%3Achronobiology.ch+filetype%3... [8] GeneActiv Actigraph: https://www.activinsights.com/technology/geneactiv/ https://www.activinsights.com/technology/geneactiv/ [9] OpenBCI Information: https://en.wikipedia.org/wiki/OpenBCI https://en.wikipedia.org/wiki/OpenBCI [10] Home Sleep Lab Information: https://www.spisop.org/openbci/ https://www.spisop.org/openbci/

zemvpferreira 5y ago
This is quite the comment, thank you so much! It'll keep me busy through the weekend. I was wondering if you've tried endogenous melatonin? I've beaten this drum on HN before, melatonin has been a life saver for me. Massive reductions in time to sleep and the first time in my life I've had a 24-hour rythm.
- disabled 5y ago
  Thank you so much! If you email me (see my profile--also anyone is invited to do this), I may be able to help you get a copy of "Energy Thieves" in English! :-) Unfortunately melatonin gives me skull-crushing headaches! :-( I am so glad that melatonin works for you! Interestingly, there is a calculation that is used with lighting called melantopic ratio. This is the best writeup on circadian lighting, by far [1]. Here is the best website [2]. Here is the best overview [3]. This has the best pictures for sunrise/mid-day/evening/night lighting (flip through the pages) [4]. The Dreem 2 [5] headband is probably a better option in terms of comfort, rather than the OpenBCI EEG, for most people. It unfortunately does not meet the requirements for it to be a "home sleep lab", though. Know that the company is required to follow the GDPR, which is useful, and good to keep in mind for the end-user. Anyways, I initially found out about chronotypes from reading a Financial Times article, with my subscription (see the gifted article link I provided below) [6]. Apparently it is a huge deal in Switzerland and Germany, which I found out by doing more research into it online, and it is studied there extensively. I also gifted a Financial Times article by a sleep expert mentioning chronotypes and how to get a good night's rest [7], if you want to read that. [1] Circadian lighting for designers and manufacturers: https://www.lrc.rpi.edu/healthyliving/img/background/additional_information/downloads/Circadian-Effective%20Lighting%20Steps%20for%20Manufacturers%20and%20Designers.pdf https://www.lrc.rpi.edu/healthyliving/img/background/additio... [2] Lighting Research Center: https://www.lrc.rpi.edu/ https://www.lrc.rpi.edu/ [3] Creating the circadian lighting toolbox — Bringing the language into practice (MAGAZINE): https://www.ledsmagazine.com/lighting-health-wellbeing/article/14197266/creating-the-circadian-lighting-toolbox-bringing-the-language-into-practice-magazine https://www.ledsmagazine.com/lighting-health-wellbeing/artic... [4] The Design Implications of Circadian Lighting: https://leducation.org/wp-content/uploads/2019/04/Design-Implications-of-Circadian-Lighting-Underwood-2019.pdf https://leducation.org/wp-content/uploads/2019/04/Design-Imp... [5] Dreem 2 Headband: https://dreem.com/ https://dreem.com/ [6] How to hack your circadian rhythm: https://on.ft.com/3lSLZSW https://on.ft.com/3lSLZSW [7] Sleep expert Matthew Walker on the secret to a good night’s rest: https://on.ft.com/2Whr8O5 https://on.ft.com/2Whr8O5

zemvpferreira 5y ago

This is quite the comment, thank you so much! It'll keep me busy through the weekend. I was wondering if you've tried endogenous melatonin? I've beaten this drum on HN before, melatonin has been a life saver for me. Massive reductions in time to sleep and the first time in my life I've had a 24-hour rythm.

disabled 5y ago
Thank you so much! If you email me (see my profile--also anyone is invited to do this), I may be able to help you get a copy of "Energy Thieves" in English! :-) Unfortunately melatonin gives me skull-crushing headaches! :-( I am so glad that melatonin works for you! Interestingly, there is a calculation that is used with lighting called melantopic ratio. This is the best writeup on circadian lighting, by far [1]. Here is the best website [2]. Here is the best overview [3]. This has the best pictures for sunrise/mid-day/evening/night lighting (flip through the pages) [4]. The Dreem 2 [5] headband is probably a better option in terms of comfort, rather than the OpenBCI EEG, for most people. It unfortunately does not meet the requirements for it to be a "home sleep lab", though. Know that the company is required to follow the GDPR, which is useful, and good to keep in mind for the end-user. Anyways, I initially found out about chronotypes from reading a Financial Times article, with my subscription (see the gifted article link I provided below) [6]. Apparently it is a huge deal in Switzerland and Germany, which I found out by doing more research into it online, and it is studied there extensively. I also gifted a Financial Times article by a sleep expert mentioning chronotypes and how to get a good night's rest [7], if you want to read that. [1] Circadian lighting for designers and manufacturers: https://www.lrc.rpi.edu/healthyliving/img/background/additional_information/downloads/Circadian-Effective%20Lighting%20Steps%20for%20Manufacturers%20and%20Designers.pdf https://www.lrc.rpi.edu/healthyliving/img/background/additio... [2] Lighting Research Center: https://www.lrc.rpi.edu/ https://www.lrc.rpi.edu/ [3] Creating the circadian lighting toolbox — Bringing the language into practice (MAGAZINE): https://www.ledsmagazine.com/lighting-health-wellbeing/article/14197266/creating-the-circadian-lighting-toolbox-bringing-the-language-into-practice-magazine https://www.ledsmagazine.com/lighting-health-wellbeing/artic... [4] The Design Implications of Circadian Lighting: https://leducation.org/wp-content/uploads/2019/04/Design-Implications-of-Circadian-Lighting-Underwood-2019.pdf https://leducation.org/wp-content/uploads/2019/04/Design-Imp... [5] Dreem 2 Headband: https://dreem.com/ https://dreem.com/ [6] How to hack your circadian rhythm: https://on.ft.com/3lSLZSW https://on.ft.com/3lSLZSW [7] Sleep expert Matthew Walker on the secret to a good night’s rest: https://on.ft.com/2Whr8O5 https://on.ft.com/2Whr8O5