Univ.student with CMT: 'Let's not allow our pain to win' : feeding the 'soul and spirit'

[Guest guest]

University student with CMT: 'Let's not allow our pain to win' :

feeding the 'soul and spirit "

Lee

The Hamilton Spectator (Nov 26, 2008)

http://www.thespec.com/Opinions/article/472514

This presentation was delivered earlier this month at a public forum

in Hamilton that was part of National Pain Awareness Week. The forum

was sponsored by the G. DeGroote School of Medicine at

McMaster University and the Ontario Pain Foundation.

It is no secret that pain is a silent epidemic and a powerful

influence that hinders everyday life.

From the moment we wake up to the last moment before we fall asleep,

we are reminded of the enormous challenges we must try to overcome.

These challenges go far beyond our physical pain as they invade all

aspects of our lives.

We must face the unfortunate reality that we are no longer the person

we used to be. Many of us face depression, sadness, anger,

frustration and hopelessness. Family members may not understand new

limitations and become impatient with the reality that things have

changed. Longtime friends may become distant or even non-existent

because once-shared activities have become difficult or impossible.

Hobbies and interests that brought joy are just frustrations and

reminders that life is not what it used to be.

If that isn't enough, we are forced to contend with the bureaucracy

of medical system wait times and overworked doctors, unsympathetic

insurance companies, uncaring lawyers involved in the settlements of

lawsuits and, even worse, our elected members of Parliament who

respond to letters of concern with empty-hearted comments of generic

interest.

We have become warriors in our own right. Our battle begins by just

trying to get out of bed. For some it is the physical pain of stiff

joints and sore muscles, while for others, it is the emotional

anguish of: " What's the point? Why bother? " among other defeating

questions. Our days are filled with:

* Medical appointments, trying to find answers and solutions to our

suffering.

* Trips to the pharmacy where we have become " regulars, " picking up

the variety of prescriptions that are supposed to make us feel better.

* Visits to lawyers and insurance offices only to learn of setbacks

and more hoops to jump through to receive much-needed funds and

benefits.

* That's not even to list the numerous chores and tasks required to

keep life in order.

At the end of the day, many of us take our medications and hope for a

good night's sleep. These daily events become a rut and can leave a

person feeling helpless and powerless.

So, the new question becomes: What can I do to make my life more

positive and gain back a sense of power? Although I am not an expert,

I would like to offer a few suggestions from my own experiences that

have helped me get through difficult times.

First and foremost, there is the Chronic Pain Advocacy Group, which

was started in 2005 by doctors Kiran Yashpal and Henry (of the

G. DeGroote Institute for Pain Research and Care at McMaster

University).

The goal of this group is to provide a non-judgmental, educational

and inspirational support community.

This group gives chronic pain sufferers the opportunity to share

their story, gain new insight into potential treatments while meeting

new people. The meetings are held once a month at the serene Royal

Botanical Gardens, typically on a Tuesday evening and consist of one

or two guest speakers, demonstrations and personal stories of pain

from new members as well as a chance to socialize.

Of the guest speakers, we have had the pleasure to hear from

professionals such as nutritionists, massage therapists, a doctor of

traditional Chinese medicine and tai chi, and patients who have

attended various pain management clinics.

Since I joined the group in 2006, I have seen first-hand the positive

influence this group has had for many of its members.

The most significant impact has been the continued messages of hope

in that we are not alone in our fight against pain, and that many

dedicated professionals are working tirelessly to bring pain to the

forefront with newer and better treatments.

As each month passes, more and more people are choosing to break away

from the isolating loneliness that pain brings and instead are

joining the crusade to give pain a face and voice.

By a show of hands, how many people here say to themselves: " I would

really like to take a nice hot bath or I'd like to go read a book

outside? " Now, how many of us actually do those things? If there is

one thing that pain knows how to do, it is to be the centre of

attention. There are few activities that we can do without our pain

making its presence known. It's always saying, " Hi, I'm here! Pay

attention to me. " So we give it exactly what it wants, while we

neglect the needs of the rest of our body, mind and spirit.

There are small things we can do to feed our soul and spirit. So

start reading that book you've been meaning to read. Take that hot

bath. Even if you set aside only 15 minutes a day for some much-

needed " me " time, it can have a huge impact on our whole outlook on

life.

When we shift our minds' focus away from the pain and concentrate on

the elements of life that bring us joy, we are in essence telling our

pain: " I know you're still there, however, you're not as important as

you think you are. This is my time. "

Another aspect that speaks to this concept is what I like to call

the " super-hero " syndrome that many of us have. While I understand

that we all fight our own battles every day, it is the superhuman

energy and stamina part that I am referring to. We try desperately to

maintain the lifestyle we had before the chronic pain.

Admitting that you may not have the ability to do everything you once

could is not accepting defeat. Instead, it is acknowledging

that " Yes, my situation has changed, however, I can still be a

productive, vital and worthy person. "

The kinder, gentler and more forgiving we are of ourselves, the less

we let our pain succeed in ruling our lives.

Let's not allow our pain to win.

Lee lives in Burlington and is a university student. has

Charcot-Marie-Tooth disease, a degenerative neuromuscular condition.

We have become warriors in our own right. Our battle begins by just

trying to get out of bed. For some it is the physical ... while for

others, it is the emotional anguish.

If there is one thing that pain knows how to do, it is to be the

centre of attention ... It's always saying, 'Hi, I'm here! Pay

attention to me.'