Pain + Work = ???

The combination can go well, like a burger with fries.  You may be able to accomplish great things despite pain, and work can be a focus away from discomfort.

Or it can feel like trying to whip up a 10-course gourmet dinner…  in 5 minutes…  with your eyes closed.

But what if you had a short-order chef helping with that burger, or Julia Child behind you all the way?  Well, support, advice and wisdom is here for you on the subject of work and chronic disease.

Rosalind Joffe (of CICoach.com) and Joan Friedlander have written Women, Work and Autoimmune Disease:  Keep Working, Girlfriend, which a great resource.

The book, which is strongly pro-work, reviews:

1. The benefits of working, including money and health coverage, as well as enjoyment and self-esteem.

2. The challenges to working when coping with a chronic illness, such as fatigue and the unpredictability of illness.

What is wonderful about the book is that it doesn’t shy away from tricky subjects such as, Should you discuss your illness with your boss or co-workers?  And, What do you do when you physically can’t do your job.  Instead it gives thoughtful, knowledgeable advice.

Women, Work and Autoimmune Diseaseis easy to read and practical.  I particularly liked the complex, real-life examples.  Both authors are experts in this field – Rosalind coaches people through these issues everyday.  And both women also understand these issues personally, having dealt with MS, Crohn’s disease, and Ulcerative Colitis.  I strongly recommend adding this book to your reading menu!

Work + Pain = You Can Do It!  This book shows you how to do the math!

P.S. I’d encourage you to sign up for Invisible Illness Week updates.  Invisible Illness Week is next week, but they’ve started the party early and are posting lots of wonderful stuff!  Rosalind is even doing a presentation and coaching.

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If the only sentence describing a book was that it contained “harrowing descriptions of pain,” most people would probably run the other way.  But for a pain management psychiatrist, that phrase is a clear invitation to me to rush to the first page.  I recently read an overview of the books written by South African author J. M. Coetzee, and his novel Age of Iron describes the pain of apartheid, lonliness and cancer.  (His most famous work might be Disgrace.)

Here are some of the quotes describing the lead character’s experience of physical pain:

I was on my way out to the shops, in the act of opening the garage door, when I had a sudden attack.  An attack:  it was just that:  the pain hurling itself upon me like a dog, sinking its teeth into my back.  I cried out,  unable to stir.

* * * * *

As long as the burden is a burden of pain alone I bear it by holding it at a distance.  It is not I who am in pain, I say to myself:  the one in pain is someone else, some body else who shares this bed with me.  So, by a trick, I hold it off, keep it elsewhere.  And when the trick will not work, when the pain insists on owning me, I bear it anyhow.

* * * * *

Describing the effect of narcotics:  As the pain recedes, as time quickens, as the horizon lifts, my attention, concentrated like a burning glass on the pain, can slacken for a while; I can draw breath, unclench my balled hands, straighten my legs.  Give thanks for this mercy, I say to myself:  for the sick body stunned, for the soul drowsy, half out of its casing, beginning to float.

But the respite is never long.  Clouds come over, thoughts begin to bunch, to take on the dense, angry life of a swarm of flies.

* * * * *

I took two of the new pills.  Again the miraculous draining away of pain, the euphoria, the feeling of being restored to life.  I had a bath, got back into bed, tried to read, fell into a confused sleep.  In an hour I was awake again.  The pain was creeping back, brining with it nausea and the first edge of the familiar shadow of depression.

The drug over the pain:  a shaft of light but then darkness redoubled.

* * * * *

And this passage, on life and illness:  We sicken before we die so that we will be weaned from our body.  The milk that nourished us grows thin and sour; turning away from the breast, we begin to be restless for a separate life.  Yet this first life, this life on earth, on the body of earth - will there, can there ever be a better?  Despite all the glooms and despairs and rages, I have not let go of my love of it.

* * * * *

What do you think of these passages?  If you have pain, are they hard to read?  Can you still find them poetic?  Are there other descriptions of pain or illness that have stayed with you?

P.S. I’d encourage you to sign up for Invisible Illness Week updates.  Invisible Illness Week is next week, but they’ve started the party early and are posting lots of wonderful stuff!

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In the United States, today is Labor Day, which is officially a holiday to celebrate all those who work.  Unofficially, it’s the last day of summer…  relaxing…  vacations.  Most schools start again this week after the summer recess.  Work picks up after a slower summer pace.  Even blogging revs up again, and blogs and websites get more visitors.

So I thought I’d ask, for our Monday Chat topic:

How are you celebrating Labor Day?

Are you savoring the last minutes of summer?  Are you preparing for a busy Fall?  Share your thoughts and plans in the comments.

Thanks to Chroma Luna.com for the picture.

P.S. I’d encourage you to sign up for Invisible Illness Week updates.  Invisible Illness Week is next week, but they’ve started the party early and are posting lots of wonderful stuff!

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I hope you’re enjoying the last few days of August…  savoring sweet watermelon and soaking up warm sunshine.  Here are the great submissions for the August carnival:

In Sickness and In Health writes about why asking for help, especially from our spouse/partner, is difficult to do in Hard Conversations.

Coping with pain is also hard.  Psychology of Pain discusses why some people are more able to deal with the challenge in Is Pain All in the Mind?

HealthSkills shares a fascinating study which uses fMRI to look at the effects of hypnosis.  Are You Curious About Hypnosis?

Help My Hurt writes an informative post about identifying pain in people who can’t speak or communicate discomfort in words.

Rest Ministries answers what to do when a friend just doesn’t “get it.”  Keep the friendship?  Try to help them understand?  Here are some answers to this friendship challenge.

Looking for a book for these last few days of vacation?  Somebody Heal Me reviews Strong at the Broken Places, which examines what it’s like to live with chronic or terminal illness.

And a few valuable “how-to’s”…  First, The Back Pain Blog gives some good advice about avoiding back pain at your workstation, in Prevent Back Pain with an Ergonomic Workstation.  (I loved the photos!!)

Arthritis Friend shares 3 Reasons to Keep a Food Journal to improve your health.

And Ed’s Health Tips reviews how treatments including exercises and acupuncture can help frozen shoulders.

Fighting Fatigue reports on the importance of Vitamin D.

Arthritis Friend asks if this is the understatement of the day?

Our last submission reminds us that Invisible Illness Week is coming up on September 8.  Will you be blogging for it???

Thanks to everyone for all the good reading!

The September Pain-Blog Carnival will be Wednesday, October 1
Deadline for submissions:  Friday, September 26

Topic:  “New Beginnings”

Submissions related - in any way - to this topic will be considered.  Back to school, looking ahead, looking back - be creative!
Send in your submissions here.

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Here’s an interview with me from the website Perfect Breathing.  Hope you like it!  You  might also like to look around the site a bit - lots of good reading.

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Reminder:  August Pain-Blog Carnival submissions due today. 

* * * * *

Have you ever come across something that puts into words exactly how you feel, or what you think?  Your own ideas may be slightly fuzzy, but here in front of you is the finished product.  Maybe you’ve had this experience when reading a poem, or listening to someone summarize a discussion.  Your thoughts - well put!

I had this experience while reviewing Rebecca Rengo’s workbook Beyond Chronic Pain.  It’s an excellent guidebook for patients to learn pain management skills and an overall approach to coping with chronic pain.

Some of the areas reviewed include:

• managing pain
• pacing activities
• increasing enjoyable activities
• facing fear
• advocation for yourself
• improving sleep

I really like the workbook format.  It enables you to individualize the information provided in the book, and it encourages you to actively use the information.  For example, in the section on enjoyable activities, there’s space for you to write what you do that’s fun, as well as new activities you’d like to try.  Space to write down exactly what you’ll do and when helps you move in a positive direction, rather than just think about improving things.

The workbook takes a positive tone, so it encourages and supports you.  Rebecca actually works with patients, so what’s included is useful and relevant.  Lastly, the author has also experienced chronic pain herself, wich gives a personal understanding to the guidebook.

I’d recommend this book both for people to use on their own, and to support their work with a pain management counselor.  Thanks to Rebecca for actually creating a workbook that let clinicians say, “This is exactly what my patients need!”

You might like to read Rebecca’s guest article, 8 Steps You Can Take to Live Well With Chronic Pain.

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Reminder:  August Pain-Blog Carnival submissions due by 8/22. 

* * * * *

This is a guest post by Rebecca Rengo, a social worker who works with patients with chronic pain.  Rebecca is also a coach and author, and she hosts the website Beyond Chronic Pain.  I’ll  review her wonderful pain management guidebook “Beyond Chronic Pain” this Friday.  - HtCwP

Rebecca writes:

It’s easy to feel overwhelmed when you live with chronic pain.  Everyday life can be a struggle that seems impossible to overcome.  You push yourself with every ounce of energy right down to your soul, and it feels like nothing’s there.  A simple activity that others take for granted can be a laborious undertaking, like sitting to watch a child or grandchild’s little league game, going grocery shopping or trying to concentrate during a meeting.

It’s especially frustrating when family, friends, even doctors and nurses tell you that you should be feeling better, you’re not trying hard enough, you’re addicted to pain pills or that you’re just a complainer.  Exhausted, depressed and hurting, you just want to feel better.

To take back control of your life, stay hopeful.  Keep moving forward.  Life can be enjoyed and lived well.  Start with these basic steps:

1.  You are your first priority.  Many people “feel guilty” doing this, but it’s selfish not to.  The better you feel, the better you’re able to be with those around you.  So ask yourself, what makes me feel better, happier, and more content with my life?  Then make sure to schedule time for what you need every day.  Quiet time is a must, whether it’s through meditation, prayer, taking a walk or reading.  Sometimes it seems that everything desirable is out of reach.  Think of activities you might be able to manage, even on your worst days.  Is it a bubble bath, looking at magazines, getting a massage?  There is something for everyone, everyday.  Take care of your emotional needs, too.  Validate yourself and surround yourself with positive, supportive people as much as possible.

2.  Accept where you are right now and whatever feelings you may have.  Do not fight against your situation or your feelings.  This will only hinder your recovery.  Accepting things as they are brings feelings of peace.  Identify where you are in this moment and how it feels.  Just as someone on a diet needs to know his or her starting point, it’s important to pay attention to your starting point each day.

3.  Set reachable, realistic goals.  Focus on what you can do now and celebrate every small accomplishment.  Pace yourself!  Resist the temptation to overdo on a good day.  That can start a downward pain cycle.  By pacing yourself, you will gradually increase your good days and begin to feel “more normal.”  You’ll start to develop stability.

4.  Don’t minimize your achievements.  Feel proud of whatever you can do and don’t compare yourself to anyone else.  Many times, just making it through the day is a big accomplishment.  Give yourself a pat on the back.  Encourage and congratulate yourself like you would a best friend.

5.  Use positive self-talk frequently throughout your day.  Are you criticizing yourself in your mind?  Replace these thoughts with encouragement and kindness.  Tell yourself what a good job you’re doing.  Don’t hold back.  Your emotional well-being and state of mind have a profound impact on your energy and pain.  Lift yourself up.

6.  Think through what is really important.  Focus on what makes you feel better. If you’re involved in activities or situations that make you feel worse, try to avoid them.  If you can’t stop right away, work to limit your involvement and make a plan to stop.  You are your own best advocate.

7.  Be empowered.  This is your life.  Talk to your doctors and other health professionals about your goals.  Write out questions and get information.  Keep a file on yourself.  Ask for help from others when needed.  Join organizations to advocate with others.  Face your fears.  Stay open to all possibilities, but trust your own judgment.  Do what you feel is best for you.

8.  Most importantly, LOVE YOURSELF to help heal.  Decide what is right and good for you.  Replenish before giving.  Take responsibility for meeting your own needs, emotionally, physically and spiritually.  Do not feel guilty for needing different things than other people.  What may seem like pampering may be what is needed to feel your best.  If others don’t understand, that’s their issue, not yours.

Just implementing one or two of these steps consistently can have a positive, profound effect on decreasing your pain and increasing your energy.  Believe that your health and your life can be better.  It doesn’t happen overnight, but if you take good care of yourself and practice these positive steps, it will make a difference.

Your pain is real.  How you live with your pain is something you have control over.  Start small.  Don’t worry about your progress or speed; just keep moving in the right direction.  A life with chronic pain can be a life enjoyed and lived well.  It starts with one step.  You’re not alone!

Thanks, Rebecca, for the suggestions for living fully despite pain.  And thanks to Northern Sun for the cute button.

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Today’s topic for Monday Chat:  Do You Go On Vacation?

We’re getting to the end of August, so summer vacation might be on your mind.  Did you know that the average US worker gets 12 days of vacation a year (compared with 21 days in Canada, 23 in England, and 39 in France).  However, 31% of Americans don’t even take all of our days off (compared to 24% in Canada, 21% in England, and 17% in France).  Hmmm, Brie cheese, the Louvre, and 8 weeks vacation - la joie!

When you add pain to these vacation issues, things can get more complicated.  If you do work, do you take your vacation?  Have you used a lot of sick days because of your illness and don’t think you should take more time off?

If you don’t work, do you go on vacation?  Do you think you still deserve time away?  Is vacationing hard because of pain issues?  Is money tight and not spent on holidays?

Please share your thoughts in the comments!

Stats courtesy of Monster.com.

Reminder:  The deadline for your August Pain-Blog Carnival submission is 8/22. 

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Pain diagnosis and treatment is continuing to change as we understand more about pain disorders and – thankfully – find better treatments.  Here are some new developments regarding Fibromyalgia.

Cymbalta has been approved for the treatment of Fibromyalgia.  This is an antidepressant, which has also been okay’d by the FDA for diabetes pain (diabetic peripheral neuropathy).  The fact that Cymbalta works in fibro confirms for me that fibro is partly a neuropathic (nerve) pain disorder.  (Here’s more on antidepressants for pain.)

Esther, a reader, sent in this link about fibro from the American Academy of Pain Management.  An excellent review about fibro for both patients and practitioners.

7 tips for dealing with fibro at Medical News Today - helpful suggestions for pain in general, too.

A reader Marlene hosts Fibromyalgia Advice, and shares this article about pain and fibromyalgia.  Lots of helpful reading at this site.

Lots of good reading.  Hope it’s helpful to you.  And please share any information you’ve found helpful about fibro in the comments!

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Do you need patience when you have a pain disorder?  Well, is chocolate yummy?  Patience is needed to keep on working to lessen your pain, it’s helpful to feel patience towards your body, towards your energy and drive, for hope, and much more.

I was writing an article about patience recently, and went searching online for a photo to accompany it.  When I came across several really great pictures, I wanted to share them all with you.  Enjoy!

By Karina Gherbst, “Patience”

By Nancy Cole, “Patience”

“Dog and Skunk” (8/24/08 - oops, the person from whom I got it on Flickr now denies taking the photo.  If you’re the photographer, please let me know and I’ll give you credit!)

By Shesnuckinfuts, “Patience”

By Lady Bug, ”Patience”

By Dave Schreier, “Patience”

By Strangemagee, “Patience”

Really, really beautiful!  Thanks to the photographers for sharing their art!

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