15 Comments
Feb 1, 2023Liked by Paul Ingraham

Yay for you and for us!

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Jan 31, 2023·edited Jan 31, 2023

My life story exactly! Reprioritizing is my daily task. The to do list is getting longer, the list of accomplishments is a joke every day. Responsibilities and expectations are growing daily and my body is just not working. Regarding your booze article, I am still hanging on to that, despite the fact that it is hurting your body in general, just don’t know how else to get through the day. Yes, I said day. If I feel really bad in the evening, after taking care of everyone and everything necessary, I can try to rest, it doesn’t work, sleep is on my wish list.

And no excuses, if you felt bad for years, you thought, and hoped, it could not get worse…but it can.

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I so sorry it’s been so difficult for you. Please take care of yourself as best you can. I really appreciate you!

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Thanks, Deborah. 🙂

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I'm sorry to hear things haven't been going well for you lately! I hope you'll be able to get back on track and start feeling better. Thank you for all you do.

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The last two days were actually quite a bit better than any other pair of days in the last couple months. Fingers crossed!

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I am a huge fan & follower for quite some time. Having been a voodoo believer for several years, it's great to read others who came to their senses and why. Your latest project, studying yourself, did raise a small red flag to me, tho. By focusing on your illness full time, are you becoming your illness full time? I have no qualifications to make any assessment, except anecdotal. Such as the friend, who since retiring, is now ill all the time & it's all she talks about. Maybe I'm projecting my fears about my own retirement! But this now seems to me to be her identity. I thought about her when you first described your mission, but I trust your objectivity more than I trust hers. Apparently...tho, I want to mention it, so here we are. Take care of yourself, and I'm glad it's not ice cream

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People certainly can become self-obsessed "drama queens" about their illness. I’ve known a few. It’s a legit phenomenon, and I certainly don’t want to slip into that.

On the other hand, it’s easy enough empathize with how consuming illness can be. Being a little overwhelmed and defined by it is understandable. And it’s not like I went looking for it. The illness started it!

I am aware of the danger. Friends can get through entire lunches with me where I don’t say a word about it. 😜 Is this a good thing? Well, at least I know I’m not a bore about it.

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Jan 17, 2023Liked by Paul Ingraham

I understand that completely. It's good you are aware that you try to make it perfect so maybe you can work on making it less than perfect if you are going to publish it. Perfectionism is one of those traits that go along with anxiety, anger, intelligence, niceness, etc. that “they” have found are common traits of people with chronic pain, fibromyalgia, CFS, etc, etc. Have you found that to be true?

I'd rather read a good newsletter and have your voice than a perfect one and lose you.

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Then an imperfect-but-genuine newsletter is what you shall have! 🙂

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Jan 17, 2023Liked by Paul Ingraham

Hang in there!!!

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Jan 17, 2023Liked by Paul Ingraham

So sorry to hear that your health has taken a turn in the wrong direction. I was very intrigued when you started this project and have been following this with great interest. I have also learned a great deal from your writing and like your no nonsense approach to sorting the wheat from the chaff. Having said this, one thing we all know is that we have to take care of ourselves and do what our body directs us to do, no matter how frustrating this can be at times. This includes you. Here's to the healthy scientists doing the necessary research, instead of forcing (often) the ill to do it themselves. Here's to those researchers listening to the ill and not making wild assumptions. Do what you need to right now, prioritise your own needs.

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I raise a glass to those researchers!

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Jan 17, 2023Liked by Paul Ingraham

I am so sorry. Please stop! I'm your person in California with identical symptoms for the same amount of time whose symptoms have increased exactly as yours have.

And I'm older than you so I can be bossy. You must stop doing the newsletter at least! Honestly, I have derived help and understanding from you over the years, and I can't say how much I appreciate you. But this can't be at your expense.

Please take care of yourself. You can get back to us with results in a year or two.

Thankfully yours,

Jody Eastman

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author

❤️ Dropping the newsletter is an option, but one of the premises of the project is that I am naturally think BY writing, it’s my default mental mode. I cannot stop writing anymore than I can stop breathing. 🙂 So the writing is going to happen no matter what.

But PUBLISHING what I write… that it is the "extra curricular" part, and I tend to take it too far, I work too hard, trying to make it really good. It’s that performative part that I really do need to drop!

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