Working HARD!!!!

Hello Everyone,

The Pain Diaries is set to make it's world debut in Calgary May 13, 2010 (during the Canadian Pain Society's conference). To make that happen I have to raise $100,000.00 over the next six months or so.

Well, I can't do it all, though I've tried. So we are temporarily moving this blog over to our Facebook Group (The Pain Diaries) in order for me to focus my efforts on producing the play over the next several months.

I think this blog is important, and would love to see it eventually taken over and run by patients, as an important tool for people with chronic pain to be able to reach a community of their peers, and I hope someone will be inspired to step in and take it over.

Until then, please join us on Facebook: The Pain Diaries. We will keep you updated on what is happening and keep some discussions going.

If you are able to help with running the blog, marketing or fundraising for this project, please contact me on Facebook.

Thank you so much for all you support, I look forward to meeting you all on Facebook and next May.

Deborah Nicholson

Mondays with Marlene

In my opinion ...

Have you ever asked your daughter to get you some rubbers? I did and the final result was quite satisfying, but getting to that point was positively hilarious. First of all she wanted me to repeat my request, which I did. Then she suggested I was probably old enough to buy my own rubbers. I agreed. Then she said she was delighted that I wasn’t too old for safe sex. I said I was delighted as well, but it didn’t have anything to do with safe sex; it was all about exercise. “Ya, ya, ya, everyone knows sex is great exercise so don’t try that one mom.”

It’s funny how some things never change. She didn’t listen to me when she was a teenager either.

After being in a brace for almost seven months, I was sadly out of shape, housebound, lacking confidence and needed to do something about it. My body was crying for help and I was up to throwing out the old lifeline, but needed some rubbers to assist me. Of course since then I have found out they aren’t called rubbers; they are officially known as Theraband, which does sound much better, especially if your daughter is involved.

So now I am the proud owner of an excellent variety of rubbers – er Theraband - to assist me into getting fit again. I found my tolerance levels, got advice from my healthcare professionals and have slowly started to increase my activity. I’m walking most morning, have now started acquacise, am trying to use my exercise ball on a regular basis and have found the Theraband some of the most useful tools I have in my little “get back into moving" arsenal.

There are still things I can’t do, and that may never change, but I’m focussing on the positive, doing what I can and am already feeling much stronger and more sure of myself.

Another great side effect? Meeting new people, getting out of the house on a regular basis and feeling so much better about myself. Important stuff.

And the sex? Well I’ll save that for another column.

Mondays with Marlene

In my opinion ...

Lots of things change when you are incapacitated and in pain. In fact, almost everything changes, but there is a way to do most daily tasks; ask for advice from your health care professional, think outside the box or just brain storm with friends and family. Mind you, you don’t want to ask the kids for advice on how to have sex with their dad, but it’s surprising what young minds come up with to solve some of those everyday problems. Since my husband and I are retired and don’t have any young ones running around the house, we’ve tried to figure things out for ourselves, often by trial and error. One thing I always did, though, was to ask my healthcare-givers if it was safe for me to do things such as vacuum, do laundry and clean toilets (the housecleaning triathlon)

Since I’ve been called a neat freak more than once in my life, you can imagine that watching dust bunnies grow under the bed pretty much made me crazy, so I had to figure out how to clean the house. What ended up working well for me, was a great husband who is probably the best string mop floor washer in the world, and breaking the job up into do-able increments. That was a challenge in itself since I’ve never in my life broken any job into small increments, but now I had no choice. I ended up dusting one day, cleaning the bathroom, kitchen sink and so on the second and vacuuming, which I found very hard, the third day and then my husband washed the floors. Presto – small increments from a “do it all now or the world will end type of gal” and I had a clean house. In fact it worked so well even though I am able to do more now, I still clean the same way. It made so much sense that I don’t ever want to put a full day into housecleaning again.

Another item that was a great help, especially early on in the relearning process, was one of those reacher things. I don’t know what they are really called but there is a handle and a trigger and a gripper so you can reach things that are too high for you and being me, I even used it to pick up bits and pieces off the floor, or the magazine I dropped or a few times to pinch my sweet husband right on the butt. Now that’s thinking outside the box! You can do it too.

Mondays With Marlene

In my opinion....

When I was in grade school, I was madly in love with the boy next door whose name was Bill, but the bills I’m dealing with these days are not the least bit loveable. People-type Bills come in all sizes, shapes and personalities, but the paper bills I am now involved with are all big. Very big. In fact so big that they are painful.

Been there done that? I’ll bet you have. Appointments with doctors, physiotherapists, psychologists, and heaven knows who else, and the bills keep coming. Whether the pain you are dealing with was the result of a car accident, a fall, or is part of that big black hole of undetermined, I can guarantee you have not only had to deal with the pain, but with the painful business of paying bills. There is no question that those of us lucky enough to live in Canada have a pretty good medical system, but it’s not perfect, doesn’t pay for everything and can drop us into an endless round of bills that we often don’t have enough money to pay, or have to pay in instalments – sometimes for the rest of our lives. Granted, we do have the option of purchasing supplemental insurance to cover a portion of what the provincial medical system doesn’t take care of, but not everyone can afford it. It’s even more critical these days when so many people are losing their jobs due to the economic downturn. I tell you, this can be a combination of the perfect storm and the ultimate catch 22.

So what do you do when you’re in pain and trying to recover from the “sticker shock” cost of being ill? I wish I had some simple answers, but I don’t. I have protested one bill I received from a U.S. hospital, so we’ll see where that goes. If you have any ideas to share with us, please feel free to leave a comment. Perhaps if we get a dialogue going, we can all get some insight into how to deal with that bill thing and be able to put more of our energy into getting our lives back.

Mondays with Marlene

In my opinion....


Probably one of the worst things about chronic pain is feeling alone, imagining no one can possibly understand and trying to figure out how to lessen the pain or live with it....live being the operative word. Who can you really talk to besides your doctor? Who can really understand the mess this pain has made of your life? How about seeking out others like you who suffer from chronic pain? I don’t mean a stitch and bitch session; I mean exchange ideas, ask each other questions, give each other hope and know, finally, that you’re not alone.

A long time ago I had a “nervous breakdown”, a different kind of pain but pain never the less, and I’ve never felt so alone in my life. I felt ashamed that I hadn’t been strong enough to work through the stress and just carry on. Thank heavens I had a doctor who was not only compassionate, but smart enough to not just put me on “the pill” and tell me things would get better sooner or later. She sent me to the hospital as a day patient where I met many other people who were going through the same thing I was. I wasn’t alone after all and I also realized that I had absolutely nothing to be ashamed of. My job was to get well and not let the “stigma” of a nervous breakdown break me down.

Although my relationship with pain wasn’t a long one, I would bet the family farm that everyone suffering from chronic pain feels very alone and a little ashamed at not being able to handle it. I think the key to starting a new life is to gather all the information you can about your “problem” then act on it. Communicate, question, search and if, after all, you do have to live with pain for the rest of your life gather all the tools that you will help you, in the end, have a life. Sign up for group discussions, family sessions and know that you are not alone and have nothing to be ashamed of. Live.

Welcome to our new Master of Ceremonies

Welcome to Marlene Robertson, our new Master of Ceremonies around here. She has graciously volunteered to keep this blog running regularly, to free me up to write the play, edit the play, fundraise for the play and eventually stage the play. So you can now watch for regular updates - two to three times a week.

We appreciate all your comments, so please keep them coming.

Here's Marlene's first message.

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“You’re such a pain in the neck; Harry is a total pain in the butt.” How many times have we all made these statements and probably many more variations? These are relatively painless pains, and quickly pass. Nothing life-threatening here. But what happens when the pain doesn’t go away? What happens when we live with pain every day, sometimes for weeks, months or years? What happens if the pain never goes away? Well I suspect some of the people we have called a pain in the neck or a pain in the butt live with pain every single day of their lives, but we can’t conceive of that so we think they should just get on with life or suck it up or just grit their teeth and quit complaining. Ah, if only it was that easy. Wouldn’t life be grand?

I’m Deborah’s mom, Marlene, and I'm going to take over as "blog master" here, as the Pain Diaries becomes a reality. Over the years I’ve had some pain: a broken wrist, surgery, root canal and many years of migraine headaches, but until I was in a very bad car accident, I truly had no idea what pain was all about. Lots of bumps and bruises and stitches and six broken vertebra in my neck and back. Paralyzing, numbing, never-ending scary pain. But I am among the blessed because almost eight months after the accident, all six vertebrae have now healed, the pain is pretty much gone and my neck is slowly starting to work again.


What would I have done if I had to live with that pain every day for the rest of my life? Could I have sucked it up, got on with my life or grit my teeth? I don’t know and thank God and my Angels I don’t have to find out, but it made me understand that pain can be overwhelming and can literally cripple you. No more skiing, long walks on a perfect summer evening, or taking your kids camping. No more driving the car, making love with a man you adore, a man who has stuck with you through thick and through thin, a man who is suffering as well. Life will never be the same, and as I was so fond of saying throughout my recovery, “I just want my life back.” I have so very much to be thankful for and never again will I judge anyone who is in pain. Never.

Counting Blessings

It's my birthday. Yep, the same week as Shakespeare and Carol Burnett and Barbra Streisand. It's a lot to live up to. And I'm now closer to 50 than 40, but I managed to get this far relatively unscathed. I've got four scars from surgery, nothing life threatening and no organs gone I can't live happily without. My bones are strong but I need bifocals. My skin is acting like it did when I was sixteen again - not a good thing. My knees creak and it's costs me an average of $40.00 a month to remain a natural blond.

But there is nothing wrong with me that a little primrose oil or Advil won't fix. And now that I have started doing research interviews for the play, I am incredibly thankful for that. I could have woken up from any of my surgeries with permanent pain, many have. My mom has migraines, I could have inherited that, most do. My knees creak but they still hold me up and take me through life one step at a time, and I can flex my neck and look up into the sky to make a wish on the first star of the night. Not everyone can still do that.

So I am thankful for everything I have. And I am amazed at the courage that people with chronic pain conditions show us. They have pain all the time, but they get up every morning, they face the day and they, too, put one foot in front of the other. And I'm sure they do it with less complaining than I do, most mornings.

I remember reading The Shell Seekers, and one of the children asked their mother how she was. She replied that she was breathing when she woke up that morning, so it was a good day. It's hard to be grateful for the little things, but I think we should all try hard to do so and let the people who are struggling with pain know how much we admire their courage.

And that we believe them.