Topic: Good books about chronic illness- staying positive?
trails
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posted
I have read one book called Sick and Tired of Feeling Sick and Tired and it really helped me feel better about being sick all the time even though no one can see it but me.
Are there other good books out there?
Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Linda LD
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You just gotta keep plugging along...and be open to the path that God wants you to take!
L
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trails
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I am trying NOT to take offense to your reply Linda.
Let's try to keep the thread on what I had hoped it would be: Good books about chronic illness that are positive.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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timaca
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Hi there Trails~
I have not read the book that you mentioned, although I have heard of it. Sounds like you liked it? Do you recommend it?
The book that I am reading now, I'm actually reading for the second time. And it is not specifically for dealing with chronic illness, but it has been helpful to me.
It is entitled "Your Best Life Now" by Joel Osteen. You can get it at Wal-Mart. The title caught my eye, for my life (as you know) went from very good to "sucks" in a very short period of time. So, I was curious as to what this guy had to say.
He is a pastor. A pastor of 35,000 people in Houston. And I guess he's on TV too. (I am NOT into TV preachers).
But, what I can say about this book is he is very, very positive.
Since he is a pastor he talks about God a lot, so for those of you who aren't open to that, it may not work for you.
If you aren't into God, you might still be able to glean insights from the book that may be of value.
The general outline of the book is as follows:
1. Enlarge your vision---basically that God has good things in store for you
2. Develop a healthy self image
3. Discover the power of your thoughts and words. (And in this section he does talk about thinking positive thoughts, and including laughter in your day as a part of healing. He also speaks of his mother who was given 3 weeks to live because of liver failure, and she recovered and has been alive for over 20 years past that diagnosis).
4. Letting go of the past...I think this is helpful for me in letting go of who I was...and living in the present. With the hope that I can, someday, get back to where I was before as a healthy person.
5. Strength through adversity (Getting up on the inside; trusting God's timing, the purpose of trials, trusting God when life doesn't make sense)
6. Learn to give....this struck home with me yesterday. No, I can't hike or do much of anything right now, but I was looking at a magazine, and realized that I could donate some money to a boy that needed surgery on his leg. So, I will do that. Maybe I won't ever hike again (unless I get rid of this lyme, and then find an orthopedic doctor that can help me)...but since I know what it is like to have a hurt joint, I CAN help someone else get better. And that can help me feel good.
7. Choose to be happy. (Happiness is a choice, beaing a person of excellence and integrity and living with enthusiasm)
I thought about this last one today. For I am feeling miserable. My muscles ache. My GI symptoms have returned....maybe C. diff is back...I'm not sure, a call is into my doctor. BUT, I thought that I could continue to have tears in my eyes, or I could be grateful that I slept decently last night. So, I am TRYING to focus on the positive.
It IS hard Trails. It is SO hard somedays. But, it is the only way we can keep our sanity.
Two things have helped me, and they didn't come from books. One came from my husband: "Play the hand that you are dealt, while seeking to improve it."
The other came from a speaker at a camp. He was talking to the staff members there...in between sessions. One group of campers had just left. The next were coming in a few hours. This is what he said. "Last week is over. It is gone. Those kids are gone. New kids are coming. They need your love and your attention. Do not compare this week to last week. It will distract from this week. Give your all to this week. To these kids. Love them like it's all you have ever had to love. Live in the moment, in the now. To look back and compare is not helpful, and will only distract you from the job at hand."
That meant a lot to me. I can't compare my life now to what it was. I do grieve over what I lost. And I hope to get it back. But, the now is what I have. And even today, with the muscle pain and the GI problems, and the fact that I can't be the wife or mom that I want....I can still do some things (like give money to that boy who needs some); and I can still be grateful for the sunshine, and the fact that I slept. AND if I ever get well, I will have a whole different outlook on people and things...I'm trying to gain that now...
This IS a tough disease. And I hate it. But to dwell on that won't help. So, I try not too. But, tears, at times is normal.
I look forward to what other books people post.
Like I said...this book won't be for everyone...and I do have to pick and choose what I take from it, for he is a bit too materialistic for me...but the overall message of being positive and trusting God to make things right is helpful to me....
Timaca ps...I am, once again, grateful for indoor plumbing! Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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trails
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Timaca!
Thanks for your thoughtful reply!
I am realllllllllllllly sorry to hear your suffering is back to the level it is AGAIN.
Guess what? ME TOO!!!
I am in soooo much pain, I SWEAR i did a triathlon in my sleep last night, as my muscles are so sore and the twitching is intense and it feels like there are razor blades in some of my muscles. OUCH!
But back to the TOPIC: I LOVED the camp quotes---those are PERFECT! That is the kind of thing I have to hold in my brain so I dont go crazy on days like today! Thank you for sharing those!
The book I recommended is soooooo great. Get a copy. It is SICK AND TIRED OF FEELING SICK AND TIRED by Donoghue and Siegel. It is so good that I carried it around with me for weeks to help me thru some things last year. I cant even tell you how much it helped me, or what it covered. Mostly the same things as Timaca's book suggestion. It was so well written and really spoke to being "invisiably ill" and sometimes feeling good and then NOT, and then good again and the feeling of What if it comes back...and how can I live today and plan for the future if I never know.
Today is NOT.
I am going to do a pencil drawing of a pulled up weed today.
That is my goal.
More book suggestions? Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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timaca
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Oh, Trails, I am SO SORRY that you are feeling poorly too! But, you understand how my muscles are feeling, for you are there too! I am sorry!!! Care for a hot tub??
My whole back hurts like I did a ton of back exercises, and my GI tract hurts, so that I'm bent over. I'm not sure what hurts worse, my back or my stomach!
What muscles bother you the most?
I think I will get a copy of that book. Thanks for the suggestion.
Today is definitely a NOT for me too.
So, does your pencil drawing of a pulled up weed have significance? Is the weed borrelia, that you are uprooting?
Hang in there....I'm off to see "john" again.
I am also grateful for toilet paper.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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trails
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I LOVE the POISONWOOD BIBLE!!!
I first got Lyme one month after returning home from a year in Mozambique. So I feel a kindredness to Africa at times. 1990-91. It was the poorest and most war torn african nation at the time --and I survived the war and the godzillion possible parasites and illness THERE, and came home to my paretns place in PENN and got LYME in their freakin backyard.
Irony, I tell ya, it fills my life.
Have you read The Sex Lives of Cannibals? OMG soooo good and funny and makes you feel okay about NOT trying to go around the world and be a development aid organizer! I think you'd like it Cave.
I see what you mean about stories that make you feel tough. I like that too. I typically dont like self help books, but found the one I mentioned so HELPFUL in spite of that.
I ordered "BUT YOU DONT LOOK SICK," at my library today. IT was published in 05 so i am excited to see a NEW book on this subject.
Timaca-- the weed drawing didnt happen, (and there should be a significance, but I usually just DO the art first and later make the connections--I have to DO this one first) but a 45 minute BATHERAPY bath did, and lots of water and a 45 minute slow walk around the campus too. I SWEAR I ran a marathon last night...how strange this soreness is!
Keep coming back with more titles! Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Ann-OH
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I, too, read "Sick and Tired...." and thought it was great.
One of my favorites is just a pamphlet really - 15 pages - by Gayle Heiss, "Living Well with Chronic Illness." It is still available and very inexpensive, too.
Living Well with Chronic Illness By Gayle Heiss Gayle Heiss, P.O. Box 210, Mendocino, CA 95460 $2.00 plus $0.60 shipping and handling
She has a newer full-size book, "Finding the Way Home." You can order that on Amazon.com and donate to Lymenet, too - see ad on your left. Below is a review of "Finding the Way Home"
[quote] Author: Gayle Heiss A warm and wise book which places illness, pain, loss, and death in their proper context -- as part of the human condition, not aberrations that beset an unfortunate few.
The author's approach helps remove the painful stigma that adds to the burden of those who are ill. The author writes from personal experience with her own chronic illness, and her years counseling and facilitating support groups for people with chronic or life-threatening illnesses.
Finding the Way Home offers its readers a healthier yardstick by which to measure human worth than physically-based accomplishments or appearance.
Rather than detailing medical conditions and their treatments, this book clarifies the life-altering emotional and spiritual shifts that are part of coming to terms with human vulnerability.
It explores complex interactions between ill people and their families, friends, health care providers, and the world at large. [end quote]
trails
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Cave-- No---sorry, those two things shouldnt have gone right next to one another. I just meant that if you like the Poisonwood Bible then you'd like "the sex lives of cannabils."
Ann--will be ordering that brochure shortly.
Thanks for the suggestions Opti!
What a great list---now i need to get a job so I can afford to BUY these, as my local library doesnt have any of them!
Maybe just plant my butt at the Waldenbooks?
Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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trails
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Great suggestions about the library!
My library is county wide..there are 6 branches and none of the branches have any of the books you suggested. Oh well.
I got 2 coming from amazon and the one I found at another branch is coming called "YOu dont look sick"
And I be trying to get them to buy some of the other books.
Libraries ROCK--
even when they don't have EVERYTHING you need! Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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hopeful123
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i really like "Radical Gratitude" by a nun whose name escaped me. not about illness, but still about living with whatever is right now without wanting, needing, or expecting it be otherwise.
then there is "radical acceptance" by Tara Brauch who is a buddhist and writer/teacher.
can't think of any others.
great thread
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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hopeful123
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hey opti,
love, love, love Jack Kornfield!!
have you read "A Path With Heart?"
terrific.
he and Stephen Levine who is a Buddhist meditation teacher working with death and the dying and teaching them meditation.
my two favs
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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Andie333
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up
Posts: 2549 | From never never land | Registered: May 2005
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One of my all-time favorites which I love is: "You Can't Afford the Luxury of a Negative Thought" by John Roger & Peter McWilliams.
The authors state you can flip it open at any time to any page and get something of value from it. They also state that this book is not about any specific illness, but what they believe to be the precursor of all life-threatening illnesses--negative thinking.
I love this book!
lifeline
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trails
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I really like reading SARK's books sometimes.
Eat Mangoes Naked
Inspiration Sandwcih
She is very validating about taking time to nap, lay in the covers, take baths, do silly things, go into your imagination.
Only thing is she can be rough about illness...saying that she heals when she learns from it. I am still wary of people who say things like that to me.
But otherwise GREAT colorful, easy to read, creative books, that make great gifts too!
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Andie333
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Great thread. I actually went into the bookstore the other day (without this list).
Everything was arranged alphabetically by author in the self-help, spiritual sections. Illness didn't seem to have its own category, so I started at the beginning, reading titles...reading titles... and more titles...
Sure, boosting my self-esteem wasn't a bad idea. I'd already ditched the ex-husband. I don't drink anymore, so that's not an issue. I'm finally doing well with my Mom, thank you. I lost 25 pounds since my Lyme dx. If I had enough energy, my career might stand a chance.
Mostly, I just wanted a book about chronic illness...
Not surprisingly, I came home empty-handed.
Sigh.
So, trails, I'm ordering the Sex Lives of Cannibals, because there's nothing on earth more healing for me than laughter.
And I'm going to investigate the other titles, too.
Thanks, everyone!
Andie
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kgg
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I like Katrina Berne. She has a web site called livingwithillness.com Many good articles there. And she has some books too.
Karen
Posts: 1856 | From Maine | Registered: Jun 2004
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trails
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Oh yeah, and lest we forget
ANYTHING FRIDA KAHLO!
I mean just as something that helps me through my pain and suffering. She went through so many of the same issues as I am having and was also a visual artist, relatively unrecognized in her time!
Viva Frida!
Posts: 1950 | From New Mexico | Registered: Sep 2001
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map1131
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This is the best lyme book I've read in 6 years. This book gives hope to those that are NOT getting well with abx.
The best book to read for staying positive is the most read book in the world. The Bible.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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OptiMisTick
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I have not read "A Path With Heart" - have to check the library on that one.
I agree that those who tell us we can't progress from our disease until we learn from it may not have the totally right idea. What does that make us - slow-learners? HA! That was a joke, but I am in fact a slow-learner. No need to blame the patient, is there??
I *LOVE* the other suggested books. I did read Eating Mangoes Naked because I love eating mangoes and as to how I eat them, well, anybody's guess.
I look forward to reading the other suggested books - if there are any more suggestions, I would love to hear them!!
Thanks to all!
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hopeful123
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thich nhat hahn (sp?) - vietnamese buddhist - Living Buddha, Living Christ. (maybe the other way 'round - Living Christ, Living Buddha.
Also, Course in Miracles materials. Have been studying the Course for about 8 years. Five with a group.
Anybody studying the Course?
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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Hey, There's a great booklet for those who are living with or loving us Lymeies."BUT YOU LOOK SO GOOD" by Wayne & Sherri Connell.Haven't we heard that a million times! It's a couple of bucks & well worth it. It's the "invisible disabilities advocate website" www.MyIDA.org or [email protected] Good luck...imalymeabean
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