Reddit reviews How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers

I am so sorry your family is going through this.

I didn't lose the use of any body parts, but I did experience a bleed in my brain at 15 that totally altered my family's lives. It's been 11 years. Had to relearn depth perception, I had double vision for a year, and they didn't know if/when it would ever happen again. When a tragedy such as what you're going through occurs, it effects the whole family. My comment will be directed at all of you, as you will all need time to heal and relearn how to live. Not only your injured little girl.

The first thing I recommend is therapy. For all of you. My parents felt helplessness, guilt, anger, and a whole plethora of other difficult emotions. My little sister suddenly had a big, strong sister who wasn't there to lean on anymore. I almost died. We each had individual feelings and emotions to process on the road to healing. Family therapy wasn't a good option for us, but it can be for some. Ideally, a mix of individual therapy with a per needed basis of family therapy would have been the path I hoped for my family.

The only book I've read that has ever been any benefit relating to my health is How To Be Sick by Toni Bernhard. I'm not sure how old your daughter is, but I recommend it to you and your wife as a possible guide in this terrible situation. In later life, I've also experienced daily chronic pain and fatigue associated to Fibromyalgia. Although it's marketed as Buddhist inspired, but it's not religious. She takes ideas from the Buddhist teachings and applies them as coping mechanisms and life skills for her chronic condition. This book has helped me with the feelings of denial, "why me?", and loss. I'm not the same person I was before these conditions, but I like who I am now, and I'm happy. My parents tell me I'm stronger, but I think they have to say that cuz they're parents. I haven't had another bleed, though apparently I'd had one prior to age 15.

Good luck, your family is in thoughts. This Internet stranger is hoping for the best for you all!

Peace and love.

I got diagnosed with chronic fatigue prior to getting the bipolar dx and so can relate to your account. Even now I am unsure if the bone crushing depression hasn't a physical cause.

The following book was useful



How to Be Sick by Toni Bernhard


Link: https://amzn.com/0861716264

In retrospect, I wish I had sought government assistance sooner. I assumed I would soon be working and then felt to exhausted to advocate for myself.

I wish you all the best and hope that you are surrounded by loving people.

I've barely started reading it, but someone here suggested the book "How to be Sick" by Toni Bernhard.

I didn't have any long-term friends when I got sick, because I'd gotten sober just 3 years earlier and had to stop seeing pretty much all the friends I still had. Then I moved to a rural area 1300 miles away.

What helped most was (accidentally) finding a forum with people who had a similar interest. I made a post about a problem I had, and stuck around to read other posts because I found it interesting. Because I went regularly, I ended up becoming friends with several other regulars. We don't chat much, but they are available if I need them (which is both less than I want, and less than I used to need).

I have had a chronic disabling illness for over 7 years now. You have to ask yourself how is not accepting it working for you? Rather badly no doubt. How is not accepting it making it better? It's not is it? What would change if you did accept it? You would have a lot less angst and a little more energy. Sometimes you have to realize that there are things that you can't change and it's time to let go and just be. Do what you can and let the rest go.

A lot of people like this book. I didn't like it that much but perhaps it will help you.

This might be of some insight:

https://www.amazon.com/How-Sick-Buddhist-Inspired-Chronically-Caregivers/dp/0861716264/166-0357771-4655327?ie=UTF8&*Version*=1&*entries*=0

As someone who has been down the rabbit hole and has no idea how the hell I came out on the other side, just know that some of us identify with your pain and you aren't alone in your struggle. You're like a chronic pain patient, but the brain's version. Then again, suffering in the conscious center of our bodies is hard to transcend even by thinking of it that way (see: mindfulness), but it provided me some solace once I grasped it. I hope you will continue to hang on and fight and keep reaching out. I've heard of treatment-resistant depression having some root in gut bacteria even (they have a role in manufacturing neurotransmitters), so please don't give up--antidepressants only do a few dynamic things with the brain's chemistry and the drugs you mentioned flood the brain's receptors and sometimes make things worse in the rebound period. I basically have a stress disorder so I don't drink alcohol anymore because the rebound after even drinking a little boosts my stress levels needlessly. I don't personally have ADHD or anhedonia so I can't understand your exact experience but as someone who has ridden a rough road for over a decade until just recently, I hope that you reach a turning point soon that gives you some hope.

http://www.amazon.com/gp/aw/d/0861716264?pc_redir=1409138329&robot_redir=1

that book might be right up your alley

I can truly empathise with you and I'm so sorry that it has been so rough. I'm 23/f with fibromyalgia and the the past year and half of the 8 years I've had it have been the worst. Fact is your life has changed, maybe not permanently, but in the here and now, it's different. Is it fair? No. But you can adjust to this life change and still be happy or at least, happier. I found this book very helpful in changing the way you think and interpret your sickness.

Have you thought about changing therapists if the therapy isn't working? I go to pyschotherapy and have been diagnosed with depression and anxiety. I also need antidepressants to keep my mood and depression in check ALONG with therapy. Since it is so severe, you could talk with your GP and see if he would prescribe anything or have suggestions.

In terms of work, I'm working part-time at home for a family business so I get a bit of occupation and some cash. Have you tried a part-time job or maybe helping out a close friend or family's shop if possible?

Friends may come and go. I realised who my real friends are when I got sick. Lost one very close one and other friends and solidified some others. It's hard. They may never get it. Don't feel afraid to go to them for support nevertheless. Friends are supposed to be there for you, though thick and thin, good AND bad times. Feel free to PM if you want to vent or talk. I'm on reddit everyday and throughout. You may not be able to go out with friends or bf but you can still keep in touch over the phone or online video chats. It's not the same but at least you can have a good convo.

What are your hobbies? Indulge yourself in them since you are unhappy. Do those things that bring a smile to your face.

I really hope things turn out better for you and soon. Don't give up. It can get better.

> How does one not form attachment when one is physically dependent on another person for their basic needs? For example, if one is physically disabled and their spouse has to provide for their care, how does the disabled person's dependence not cause fear of loss, fear of abandonment, etc?

I'm a caregiver to my wife who has physical disabilities. Coming from that perspective, I agree with Zeniues' advice to watch all of those thoughts you brought up. In my limited experience with this technique, almost all emotions lose their power when you acknowledge and watch them.

Fear and worry in general are a result of your mind residing in the future. Staying in the present moment is essential. As is recognizing and accepting your limitations and the results of those limitations. Accept that you need help/care. I don't think the dependency is bad, so long as the fear is removed from that dependency, if that makes sense. I am dependent on my job in order to pay our rent, and that by itself is fine, in my opinion. It's when I jump in to the future and worry about losing my job that the dependency becomes harmful.

I bought this book a while back but have yet to read it. However, I think it may have some good insights for you, "How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers": http://smile.amazon.com/dp/0861716264/ref=cm_sw_r_tw_dp_9lPtub0EGNN9R.

I'm the author of "How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers." This is my first blog post for Psychology Today. I hope you enjoy it. Here is a link for my book: http://www.amazon.com/How-Be-Sick-Chronically-Caregivers/dp/0861716264

There is a book, "How to be Sick" by Toni Bernhard that was helpful, comforting and a little validating: https://www.amazon.com/How-Sick-Buddhist-Inspired-Chronically-Caregivers/dp/0861716264/ref=pd_lpo_sbs_14_t_0?_encoding=UTF8&psc=1&refRID=VG4Y5N47MX9QJZ7AYHM3

She has another called "How to Live Well".

The first helped me while I was in a dark place about being ill.

This may help :

http://www.amazon.com/How-Sick-Buddhist-Inspired-Chronically-Caregivers/dp/0861716264

Also, how do you do with mega high potency probiotics like VSL#3 ? I know probiotics are better for the colon than the small intestine, but I've read of a couple of people that megadoses of probiotics helped their SIBO enormously - the trick is to avoid those with FOs in them....

Definitely not reveling in others' misfortune. More like becoming more empathetic to others' struggles and realizing that suffering is universal, and most importantly, realizing that it doesn't have to break you. I am not religious, but Buddhism has some really great things to say on this topic. Peace Is Every Step by Thich Nhat Hanh was really helpful to me, along with a few other Buddhist books. How to Be Sick by Toni Bernhard has a lot of great tools and practical advice. I read it with someone else in mind but found it invaluable for myself.