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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 · 4 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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A Picture of Hope

March 2nd, 2015 · No Comments

This entry by Amber is the 4th prize winner for our “Write Something to Share” contest.

What does the picture remind you of?  It makes me think about hope and promise, which I thought was perfect at the start of the new year.  Thanks, Amber!

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The Waves of Pain

February 23rd, 2015 · 1 Comment

Paris’ poem is the 3rd prize winner for our “Write Something to Share” contest.

Pain is like riding a wave in the ocean
There are the high tides and the low ones
The secret is staying on top of it so it doesn’t suck you down under
Enjoy the calmness of the day when the pain is low
Stay with the storm of the day when the pain is at its height
The tides will change as the hours of the day
Stay afloat, ride that wave, and drown the pain

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10 Ways to Tame the Beast

February 16th, 2015 · No Comments

Mary Beth’s entry is the 2nd prize winner for our “Write Something to Share” contest.

We are pain warriors.  Each day we wrestle with the beast called chronic pain.  Here are some of the tools I use to tame it – perhaps they will be helpful to you as well.

1. Pain Support Group
If you can find a local group, why not give it a try?  It can really help you feel understood, to surround yourself with those who know what it’s like to juggle the demands that pain throws at you.

2. Meditate daily
This habit helps manage the stress and anxiety that often accompany chronic illness.  Having time to quiet your mind can restore your inner peace.

3. Stretching / Physical therapy
Quite frankly, “just do it.”

4. Journaling / Counselor
Having a way to express yourself as you work through challenges is very beneficial.  Whether it be a therapist, writing in a notebook, or both, you can work through the emotional struggles of living with pain.

5. Self-care
Treat yourself with loving-kindness.  Your quality of life will improve when you pay attention to your own needs.

6. Pacing
Planning your week really helps.  For example, when you schedule a big outing, plan to rest the day before and the day after your event.

7. Supportive Friends
It’s a true gift to have a friend you can call when you need to vent.  Bonus empathy points if the friend has a chronic illness.

8. Gratitude
When life is the most challenging, practicing gratitude can provide a broader perspective.  One way to do this: write down 5 things you are grateful for each day.  Extra credit: Make 3 of the items something you admire about yourself that you observed that day.

9. Volunteer
If you have an opportunity, it really lifts your spirit to help someone else out.  You may even find something that you love to do.

10. Music / art
Any form of art can speak to your soul.  Whether you’re creating or passively enjoying it, art can be uplifting.

Finally –
“Start where you are.  Use what you have.  Do what you can.”  – Arthur Ashe

Thanks to Mary Beth for her coping suggestions.  Mary Beth writes that has had a chronic pain disorder, Complex Regional Pain Syndrome (CRPS/RSD), for 12 years.  She lives in Maryland with her 2 teenagers and supportive husband.

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Chronic Pain –Try It On!

February 9th, 2015 · 1 Comment

This is the 1st place entry for our “Write Something to Share” contest.  Congratulations George!

I just watched 2 adults on YouTube attempt to deal with simulated dementia, which left them crying and angry.  I wonder if we could make a chronic pain simulator.  Think you know what it is like to live with pain?  Try this test and learn a life lesson.  And yes, I added a little humor – trust me you are going to need it.

RULES OF THE GAME:
1.  Get a small backpack or fanny pack.
2.  Fill it with gravel, sand and newspaper.
3.  Zip it shut and glue the zipper closed with hot glue or super glue.
4.  Put the pack on around your torso, any way you like.
5.  Glue, tape or zip-tie the clip on the pack’s belt shut.  Sealing the zipper will just make it so it takes some time to remove:  I want you to think about what you are doing as you attempt to remove the pack, because people with chronic pain cannot get away from their disease.  They get no coffee break, no vacation, no time off.  Not even one day, one hour, or one minute.
6.  Now that you are wearing the pack, go about your normal daily routine.  BUT you cannot remove the pack at any time.  Yes, this means when you drive or walk, when you shower, go to work, attend social events, sleep or change.  Rules are rules, you cannot take it off even for five minutes to go to the bathroom.  (Sorry)  Obviously this will mean a few things:  first you will have to get creative to solve many problems, second you will have to deal with your emotions.  I will leave the 3rd, 4th, 5th … things for you to notice and deal with.  Keeping notes helps.

RESULTS & AWARDS:
1.  If you are strong enough to get past several hours, I salute you for your effort and profoundly thank you for attempting this trial.  A big hug.
2.  If you make it past 24 hours, my mouth is agape, with a warm handshake and seriously profound gratitude.  I am amazed at your power and resilience.  You have certainly earned a gold star.  A bear hug.
3.  If you manage to get through two or three sleepless nights, if the sore spots and bulge under your cloths didn’t garner too many stares or lost friends, you have earned two gold stars.  By now I am groveling on the floor, kissing your shoes and weeping kind gratitude.  Rose petals shower your path.
4.  If you can manage five to seven days … you must be either a Navy SEAL or just stepped off an alien spacecraft.  I am no longer handing out stars but putting you in for the National Medal of Honor or the Nobel Peace Prize.  Your choice.  The Dali Lama calls, the President and Pope have invited you to stay over, world leaders and common folk flock to meet you and honor your merest wishes.
5.  If you can leave it on for the rest of your life, then you have earned yourself the highest honor and accolades.  You are one of the most humble and meek individuals on the planet.  Your inner strength and wisdom are read of in famous religious texts.  You are part of a unique and special group: you are disabled by chronic pain.

“God doesn’t just give chronic pain to anyone, he chooses only the strongest.”
–Anonymous internet quote

Thanks to George for his creative, thought-provoking writing!

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