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A Daily Act of Kindness

May 18th, 2015 · No Comments

Welcome to our series, inviting you to try a new practice each week. To enjoy life more, you can decrease the negative or increase the positive. Unfortunately, for those of us with chronic pain, we sometimes can’t lower that negative experience. So these practices will be designed to increase the positive!
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A daily act of kindness.  Looking outside ourselves is a way to do something positive in the world, which can also help us feel more optimistic.

Your Invitation:  Do a daily act of kindness.

Please write your experiences with this practice below in the comments.

Resource:  All about Kindness by Toni Bernhard

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Smile!

May 11th, 2015 · 1 Comment

Today starts a new series, inviting you to try a new practice each week.  To enjoy life more, you can decrease the negative or increase the positive.  Unfortunately, for those of us with chronic pain, we sometimes can’t lower that negative experience.  So these practices will be designed to increase the positive!

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Smile!  It’s such a simple thing to do, but it can have profound effects.  Your mood can improve, your stress hormones can go down, your outlook can be happier, and you can spread these positive effects to those near you.

Your Invitation:  Smile as often as you can, as often as you remember.  It can be a little inner smile or a great big grin.  You don’t have to feel cheery inside to do this.

Please write your experiences with this practice below in the comments.

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Thank You, and What’s Next!

May 6th, 2015 · 1 Comment

This week’s article was the last of your entries for our Write Something to Share contest.  Thanks so much to all who sent something in, for your effort, creativity and wisdom.

Starting next week, I’ll be inviting each of you to try a small practice each week, designed to increase your happiness.  More to come Monday…

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How Do You Answer, “What Do You Do?”

May 4th, 2015 · 3 Comments

This is Mary Beth’s entry for our Write Something to Share contest.

“What do you do?”

These seemingly innocent words make me cringe a little.  As a person with a chronic pain disorder, there is no straight-forward answer.

In our culture, many people are caught up in their jobs, and they equate you to your occupation.  Some jobs have extra clout, lke doctors and executives.  Ohers are often looked down upon, such as garbage collectors and janitors.  But none of these jobs tells you the value of the individual.  It doesn’t reveal a person’s character.  It’s merely a snapshot of how he/she makes a living.

Having a disability that prevents me from working outside the house, I often pause when asked what I do.  I feel like the real answer is something some people don’t want to hear.  Chronic pain is a topic that can be uncomfortable to discuss.  I’d just like to be able to mention it casually, and not kill the mood.

After a brief pause, my typical reply is, “I tutor a student in English as a second language.”  Which is true.  I do volunteer 4 hours per week.  It’s the most “work-like” answer I can give.  But it only encompasses a small segment of my life.  It fails to describe the frequent physical therapy, doctor and other appointments I attend.  It doesn’t portray my challenges or the strength required to “just keep swimming.”

So, the question remains.  What do I do?

Here’s the real answer:  I work hard caring for my family and myself.  I continue to learn new ways to manage my pain.  In addition, I juggle multiple medical appointments, and spend a few hours a week volunteering at a job I love.  I can’t explain all of this to everyone I meet.  And that’s okay.

Thanks to Mary Beth for her wise thoughts.

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Distract Yourself from Pain (When You Can)

April 27th, 2015 · 3 Comments

This is an entry from Susan for our Write Something to Share contest.

I have dealt with severe chronic pain (RSD/CRPS) for 17 years.  I have over the years found many ways of distracting myself from the pain.  I most often used music – classical, music with nature sounds, spiritual music.  It is the one thing I return to over and over.  I have also used sewing, drawing – learning to draw better.  Another thing that is of great help is I love to make cards to send to friends who are sick and the families of those who have passed away.  Giving them a cheerful card or just let them know I care, giving empathy to the surviving family is of help to them and of help to me.  I feel like I am helping someone else, and it gives me pleasure and helps me forget the pain for a while.  I also have written poetry – things I have thought about or seen – it also gives you a break from the pain.

My mother was my main caregiver for years.  She understood my pain better than anyone.  But as she developed Alzhiemer’s disease over several years, I slowly began helping her.  For a while we helped each other, with my father’s support, until he passed away 2 1/2 years ago.  I gradually became my mother’s main caregiver and emotional support.  To help us both, I tried to keep our minds active with word puzzles, videos, music, games, pictures.  She is now in a nursing home.  Now I try to visit her as often as I can.

Some days there seems nothing you can do, just endure the day.  But, other days, there are so many little things to keep your mind off yourself and help others.  It helps you forget your pain for some time.  I have gained some really close friends through sending cards to help them.  They in turn have become supportive of me.  That’s how I cope with the pain. Some times there is nothing I can do to relieve it, but even those days, the music helps a lot.

I hope these words help others think of something to ignore the pain they feel and keep going with life.

Thanks to Susan for her suggestions to distract from pain.

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Bible Inspiration

April 20th, 2015 · No Comments

This is D’Ann’s entry for our Write Something to Share contest.

I suffer from RSD/CRPS.  This is one of my mantras:

This is not how I wanted my surgery to go – being left with RSD/CRPS, losing my job, insurance, income, home, car and friends.  But God and I can handle it, as something good will come from this, even though I can not see it now.  I know that God causes everything to work together for the good of those who love God and are called, according to his purpose for them (Romans 8:28).

When I’m shopping and can’t afford something due to being only on SSD, I say this to myself to fight the depression and anger at having RSD after surgery.

This is not how I wanted my surgery to go – being left with RSD/CRPS, losing my job, insurance, income, home, car and friends.  But God and I can handle it, as something good will come from this, even though I can not see it now.  The Lord is my Shepherd, I shall not want (Psalm 23:1).

Thanks to D’Ann for this inspiration.

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Do Something Despite Pain

April 13th, 2015 · 2 Comments

This is an entry from Virginia for our Write Something to Share contest.

How to Cope with Pain for me:

Read, knit, make something, make dessert, be up inside the house in winter and outside in summer.  I do something within my limits.  Pain is a limitation but I can get up, walk, think, figure out what to do.  Doing helps everything about pain, a little less first in my brain.  And I always have music, talk radio, TV on in the background.  It’s another distraction as I do something.

Thanks to Virginia for her good suggestions.  Find out more about knitting for ill penguins (I think this is real).

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Pain on the Inside

April 6th, 2015 · 2 Comments

This is an entry from Amber for our Write Something to Share contest.

“We may not look sick, but turn our bodies inside out and they would tell different stories.”

– Wade Sutherland

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Let’s Reframe What It Means to Complain

March 30th, 2015 · 2 Comments

This is an entry by Barbara for our Write Something to Share contest.

Complaining has a bad rap.

The definition given to complain includes: expressing dissatisfaction, pain, censure, resentment; to find fault.  A pretty negative definition.

What if, instead of complain, we used the term share, or repair, or even renew.

When you have a chronic illness, you can spend a lot of time and energy handling your care regimen, your exhaustion, and your pain.  On top of that, you need to manage your roster of daily responsibilities and chores; and also produce the emotional steam needed to stay just six inches ahead of your pain so you can function.

Sometimes complaining serves as the necessary release valve so you don’t combust.  One or two gripes expressed out loud can help you renew flagging energy.  Energy that had served to contain distress can be released and redirected toward fortitude.

I have found that saying, “I can’t stand this pain another minute,” helps me to stand it for a lot longer.  And after I say that, if my partner holds my hand and says, “I know,” we can both stand it together.

Sometimes complaining is connecting.

When someone asks you, “How are you?”, instead of answering with the expected, perfunctory, “OK,” sometimes saying, “Not so good today,” or “I’m actually having a bad day,” is honesty.  You’re not deflecting the asker with a token response.  And if you then follow up your answer with, “I really appreciate your asking,” you have made a genuine connection that will hopefully have more meaning for both parties.

I’m not suggesting you do this with your Starbucks barista or Olive Garden waitperson.  But why not with your friend, colleague, or cousin.  And certainly with your partner.

In fact, trying to keep your state a secret from your partner by not complaining is misplaced kindness.  It cheats both of you of a chance to connect – the ill partner doesn’t get empathy and the well partner doesn’t get a chance to show understanding.  And besides, it doesn’t work.

So let’s reframe complain.  Complain is share and repair and renew.

Thanks to Barbara to her wisdom.  Please visit Barbara’s excellent blog, In Sickness and in Health, where she writes about families and couples coping with illness. 

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A Story About CRPS

March 23rd, 2015 · 2 Comments

This is Anne’s entry for our “Write Something to Share” contest.

65 years of CRPS?

I was born.  1949.  At delivery, my hip dislocated but this was only picked up when I started walking at a year old.  Because of the time lapse, nothing could be done.  With the help of a mini walking frame, I started to walk.  As time went on, my (dislocated) left leg showed a severe bend-in at the knee; it was also shorter than the right leg, but I learned to compensate.

As a clothing designer, my work involved a lot of up and down movement for measuring and pinning.  In 2008, I had severe bone-on-bone pain in my right hip.  Because of work bookings I had, I could not go in for a hip operation then, but with meditation and acupuncture I got through the next year.  In 2009, I had a hip replacement.  Amazed at getting out of bed the next day after the operation.

About a month later, I felt immense tingling in the right thigh.  I saw a neurologist who said the nerve had possibly been damaged. As nerves only grows 1mm a month, time would tell if it was permanent.  I tried Lyrica and a TENS machine to hopefully stimulate the nerves and treat the tingling.

At the next check up, the surgeon said the left hip was getting worse, so in 2010, back to hospital for another operation.  In 2013, I injured my knee and also needed a knee replacement.

That December/January were the worst months of my life.  Normally a very strong person, I can take a lot of pain before doing anything about it.  When working with the physio, I was in a lot of pain.  As soon as I put my leg on the floor, the knee started throbbing and swelling up, it was shiny and an angry red, got excessively hot and caused a lot of pain.  Each time I did a session, the knee was getting stiffer until I could not bend it at all!  Pain medications and epidurals did not work.  I was diagnosed with CRPS.

I went online to read about it.  Everything mentioned on the fact sheet seemed to be written about me!  The initial symptom started in 1975 and over the years other symptoms were added.  I did guided imagery which helped tremendously.  I did the brain re-training on a computer program.  I started meditation again.  It has taken me more than a year from the knee replacement surgery to get anywhere near ‘normal’ today.

Meditation, a strong will to survive, endurance to continue through pain, and acceptance of pain has gotten me to where I am now.  I’m not free of pain, but I can handle the jolt of pain every so often.  I accept it and let it go!  I’m getting back to exercising.  I can’t do the exercise that I used to do, but my main aim now is to regain some of the muscle I lost.

I hope this article of events will inform people that CRPS can take many years to develop.  Thank you for listening.

Thanks to Anne for sharing her journey and what she’s learned about a complex illness, CRPS.

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