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Distract Yourself from Pain (When You Can)

April 27th, 2015 · No 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 · No 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 · 1 Comment

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 · 1 Comment

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 · 1 Comment

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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Pain Pathways, March 2015

March 18th, 2015 · No Comments

The new issue of Pain Pathways has been published.  Link:  Pain Pathways magazine

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Using Distraction to Forget a Little About Pain

March 16th, 2015 · 5 Comments

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

As I’m allergic to morphine, codeine and their many derivatives, I’ve had to rely on distraction to cope with my severe chronic pain – even wearing clothes can increase the pain – for the past 20 years.  When I was still able, I used to make toys, knit/crochet, sew… in short, anything that would distract me.  These days, my TV is on virtually all the time I’m home, and I use the internet.  It doesn’t mean I actually watch TV, but it’s on.  When I’m travelling on my mobility scooter, my lovely 4-legged companion Honey helps to keep pain from overwhelming me, as she does at home.  Her gentle licks are a soothing balm.

I’ve been blessed with a ministry among the street folk and homeless, largely through the night, which helps me deal with the fact that sleeping is often impossible.

I believe strongly that distraction is a way to deal with chronic pain.  If your mind is busy elsewhere rather than on yourself, it’s amazing how much pain one can ‘forget’ one has.  It doesn’t mean that one’s pain is imaginary at all, it simply means that you’re far too busy with other things to notice it all the time.

An ex-friend of mine once told me that she would ‘leave me alone to concentrate on my pain’, when quite frankly that’s the last thing I wanted to do.  That’s an indication of why she is now an ex-friend, she distanced herself because I was too positive for her.

Thanks to Margaret for sharing her story.

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Chronic Babe Book on Kickstarter

March 12th, 2015 · No Comments

A great website you might know is Chronic Babe, hosted by Jenni Prokopy.  It’s a wonder collection of “need to know” information about living a full life despite illness, written with directness and humor.

I was happy to get an email recently from Jenni saying that she’s creating a ChronicBabe book.  She is close to her Kickstarter fund raising goal, and is requesting a little bit more to fund her project.

Here’s the link:  Chronic Babe Kickstarter campaign

I believe it’ll be a great resource, so if you’re able, it’s a great cause to contribute to!

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Frustration

March 9th, 2015 · 2 Comments

This is Kathleen’s submission to our “Write Something to Share” Contest.

I normally submit something upbeat and helpful when submitting to this blog, and I’m pretty excited when I’m sent prizes to Australia.  Today I’m just going to rant a bit and I’m sure you can all relate to my feelings, mainly frustration.

A few years ago, someone finally figured out I have migraines.  By someone, I mean I figured it out, and the hospital agreed with me.  I guess I’m smart.  After a long, bad spell full of monitoring, avoiding triggers and more, I went into remission.  For no real reason.  My chronic headaches also backed off.  I wasn’t cured, but I still felt fantastic.  I stopped monitoring everything I did, I stopped avoiding triggers, I took it all totally for granted.  It didn’t matter, I remained well.

Unfortunately I also developed an out-of-control skin fungal infection during this remission.  After 5 months, I finally successfully eradicated the fungi.

But now the migraines are back.

I can’t tell you the frequency, it’s probably more than once or twice a week, but I’m not documenting it.  Frankly, it’s too upsetting.  And now we get to the frustration part of my post.

Why?  Why did they go?  Why are they back?

Why can’t I ask someone nicely, and reasonably, not to use a product because it gives me a migraine?  Why am I the one who has to leave so you can continue?

Why do I have to buy new glasses?  Why aren’t they helping?

Why does my mattress demand to be replaced tomorrow?  Will that fix it, or am I throwing away $150 I could better spend on painkillers which will definitely work?

Why are the pillows I keep buying at $60 each not quite right, and why am I spending all night playing Goldilocks with them?  This pillow is too hard, this pillow is too soft.  None of these pillows is just right, and now I’m too angry to sleep.

Why do you keep telling me my life is a holiday, and the welfare money I get from the government is easy money, when I have spent 5 hours on my feet washing your dishes with this headache?  Why must I smile and be nice to you while you do so?  Why is this acceptable?

Why does this have to happen to me and why do some people live their entire lives without taking as much as a Panadol?

Why are you making me feel so inadequate because I want pain relief for an extremely painful condition that is not my fault?

Why do you think telling me to relax through an attack is good advice?  Maybe I should try hitting you over and over with a plank of wood and tell you to breathe through the pain.

I asked the kindly, elderly dermatologist, why I was better with a very bad fungal infection, and he said sometimes a co-incidence is just a co-incidence.  It feels like cold comfort right now.

I believe we can all empathize with the frustration, and thanks to Kathleen for an honest story.

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