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I have been reading some wonderful books

Discussion in 'Lifestyle Management' started by jesse's mom, Mar 4, 2018.

  1. jesse's mom

    jesse's mom Senior Member

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    I discovered an author who has ME/CFS.
    Her name is Toni Bernhard. She practiced meditation for 20 years before she got what seemed like to flu on a trip to Paris. That sounds familiar (except the Paris part:))!

    She documents her illness in her book HOW TO BE SICK.

    Then she gives personal accounts of how her meditation practice helps her. She also suggests meditation exercises that help her. This book helped me calm my mind around having this illness. A calm mind is so helpful with the wired/tired feeling that can overwhelm me.

    She writes in a very easy to read manner. She somehow winds humor and calmness in a story that is really so tragic.

    Please know that this mostly Buddhist practice is really not a religion and does not interfere with any religion. It does not contradict Christianity, Judaism, or the Muslim religion, it feels like it fits hand in hand.

    This book is one that I know will be in the bed with me for a while! Good company.

    Toni's new book HOW TO LIVE WELL with CHRONIC PAIN and ILLNESS.

    I just started reading it. I like how she writes these really short chapters. I am really liking it so far. Again she writes with such compassion and humor.

    These books make me want to be able to read longer. I have to read in 15 minute blocks because my eyes tend to defocus, Then if I push it they have a muscle spasm and jitter from side to side. I just can't absorb these teachings and stories fast enough.

    So, I hope this helps someone.

    Don't forget you can use the portal here on Phoenix Rising to access Amazon and it helps to support this forum financially.

    Wishing you calm and healing

    love,
    Jessie's mom
     
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  2. Ravn

    Ravn Senior Member

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    For those who find books too much, the author also blogs:

    https://www.psychologytoday.com/blog/turning-straw-gold

    Note: While the blog features on Psychology Today the author believes ME to be a physiological illness and that the function of psychology and philosophy is to help patients cope better with chronic illness.
     
  3. RebeccaRe

    RebeccaRe Moose Enthusiast

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    She's my favorite! Her essays have been the best and most helpful things I have read about coping with having a chronic illness.
     
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  4. jesse's mom

    jesse's mom Senior Member

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    In her book, How to be Sick, she says she believes it is physical and can be eased by mindfulness and that psychology can help.
    She got a flu that began her illness. Viral.

    I'll check out her blog
     
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  5. lior

    lior Senior Member

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    I can strongly recommend it too. I think actually someone through here told me about it, in the early days before my diagnosis was confirmed. Can't remember who though. Very grateful to them! The book was a good guide to help me accept my illness. It made it a lot easier; I think I would have been in more turmoil without it.

    I felt calmer about things while in the practice of reading the book... I plan to re-read it if I ever get really upset about my health again. I expect I'll have new experiences to digest as my illness continues, and that would bring new meaning to the book.

    One really good tip in How To Live Well that I remind myself of frequently is 'pretend-sleep' - if I can't sleep, I just lie still and pretend-sleep, like Toni Bernhard does. That kind of rest does help.

    Other books:
    Cure by Jo Marchant mentions CFS in one of the chapters. It's about the link between mind and body, so not everyone on here will be a fan. Talks about the placebo effect too, so might be a good one for anyone thinking about doing the Lighting Process. The gist of it is that a placebo can help your body heal with the resources your body already has to heal, but it can't make your body do things it's incapable of. Didn't LOVE it as a book but that was an interesting insight.

    How To Deal With Adversity by Christopher Hamilton is in the School of Life series. It's a philosophy book, written in a popular/accessible way. There is a really good chapter on dealing with sickness. It did help me reflect on things. Nothing specific in there about CFS. This book I did love.

    Self-Compassion by Kristen Neff - haven't read it all but if you like Toni Bernhard, you'll probably like her - same kind of attitude. She has some meditations on the Insight Timer meditation app if you want to try them out to see the vibe before buying the book. It's not about sickness as a book, but I would see it as a good next step if you like Toni Bernhard.

    Overcoming Chronic Fatigue by Mary Burgess & Prof Trudie Chalder - haven't read this yet but it was recommended by the CFS clinic I'm going to. It's a guide to CBT. I've done CBT in the past for depression and I think they should teach it in schools: it's about how our minds work. I don't think it's a 'cure' for CFS but I don't think it could hurt anyone to know about CBT. I'm planning to read it to remind myself about CBT techniques so I can catch myself if I start to get into any funks about being ill.
     
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  6. RebeccaRe

    RebeccaRe Moose Enthusiast

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    Another good book is The Sound of a Wild Snail Eating by Elisabeth Tova Bailey. It's written by a woman who is bedbound with CFS, and is given the gift of a potted plant that also contains a small snail that she learns to observe, appreciate, and nurture.
     
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  7. jesse's mom

    jesse's mom Senior Member

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  8. Mel9

    Mel9 Senior Member

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    Be careful with Trudi Chalder
    Her teachings have been enormously harmful to people with ME
     
    Last edited by a moderator: Mar 5, 2018
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  9. lior

    lior Senior Member

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    Thanks for the warning @Mel9 :)
     
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  10. Starsister

    Starsister Senior Member

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    Yup, I was going to say, I'm dubious about anything recommended by a clinic. I've had clinics refer patients to me that knew nothing about me and were totally out of my area. Clinics often get their info from unexamined sources, somebody in the office just orints up a list they find on the internet just so they have something to hand out to people and feel like they've done something to "help". My, don't I sound cynical, but our medical system, or the US one, will do that to you!
     
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  11. Magnum

    Magnum

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    Thank you all for the recommendations, and the warnings/caveats! The blog posts are especially useful (easier to consume for me).
     
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  12. ukxmrv

    ukxmrv Senior Member

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    Both of these books sound awful.
     
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  13. Starsister

    Starsister Senior Member

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    Regarding the books mentioned above.. I do believe in the mind, body link...In the kind of trauma therapy I do, we call it the " bodymind". Or better yet, mind body spirit link or work. But I've sure learned on these CFS forums how in Europe the mind body link has been misused, misapplied, and abused in order to justify the myth of " quick fixes" that serves the healthcare companies..or government..whoever is paying the bill. I hope folks don't always blame the mental health therapists or even the mental health system for the use, misuse, or spread of cognitive behavioral methods, EMDR etc. except to the extent when they have a choice to collude or not collude with the insurance companies requirements.

    To go along with the insurance companies dictating or only covering treatment methods that that insurers "think" they can quantify is the only way many practioners can stay in practice, just like the MDs have done. I've always refused to be an "in network" insurance provider because it gives them more latitude to dictate the length and terms of the therapy. Consequently, I've not been able to earn nearly as much money in my job as most therapists, but at least I can go to bed with a clear conscience.

    So many books and treatment models are made up to advance someone's career and create money. These mental health and health care professionals with oversized egos take commen sense techniques that therapists have been using since the take off of psychotherapy in the 50s, repackage it with slightly different words, copyright it, then market it to the public, hospitals, and insurance companies as a "quick fix" (aka inexpensive) to complicated health and mental health issues that are actually more complicated and multilayered. Oh..but FIRST they write a book about it with their special copyrighted treatment name on it, so they can make lots of money selling books and going around the country getting paid sometimes HUGE amounts of money for conferences and other speaking gigs...and if they are lucky..get a series on PBS. I admit IMHO, some on PBS have some great content, like John Bradshaws work on dysfunctional family systems years ago.

    But Seriously, this is the business model that gets marketed to psychotherapists on "How to build and optimize your income through private practice". And the poor souls who work for publicly subsidized agencies, or even private agencies, often don't have latitude to choose treatment techniques other than what the agency dictates. I'd imagine with many folks on disability insurance, this is what they run into if they are limited to going to a non profit agency. Often agencies are only funded to treat a client for a few sessions or months so they just want to be able to document that you seemed to show some improvement in a short period of time. And mental health plans also often refuse to pay for techniques that cannot be measured with a checklist, or completed in a few months. They want the "illusion" that they provided coverage, rather than caring about whether anyone was actually helped.

    Sorry that this went way off topic from the books duscussion, but it is very related. " buyer beware" and pay attention to if the book is part of a bigger marketing strategy for the author. I feel that us mental health consumers need to be educated about all the factors that shape the mental health services available to us, and I get to see both sides of it, fortunately or unfortunately! :aghhh::ill::mad::confused: OK, now I'm primed to write that letter filing a complaint to the insurance company regulatory board regarding an insurance company who is denying my client thousands of dollars reimbursement for her treatment....for transparently non clinical, made up excuses!
     
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  14. Daffodil

    Daffodil Senior Member

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    lol i just wanted to say that i love your picture and screen name haha
     
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  15. Magnum

    Magnum

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    Ha, thank you @Daffodil !
     

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