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Mrs. Dani
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Date Joined Jun 2009
Total Posts : 2787
   Posted 4/10/2011 10:03 AM (GMT -6)   
Effects Of Chronic Pain On...
 Family, Friends And Co-Workers / Co-Volunteers
 
 
     Chronic and terminal illness effects us all mentally, emotionally, socially and financially. Often times families, friends, and co-workers are effected as well. Sometimes, the support is positive and everyone around you is able to adapt to a new lifestyle. Other times there is little to no support. The reactions are negative and no one is willing to accept the new limitations. Either way chronic and terminal illness have a very real impact on our lives.
 
How has your chronic pain effected your Family?
How has your chronic pain effected your friends?
How has your chronic pain effected your co-workers or co-volunteers?
 
 
Below are articles about the struggles we face each day.
 
Chronic Pain And The Family
 
 
 
"....The reactions of family members and friends in turn have an effect on the person in pain. In the beginning, the emotional support and practical assistance are welcome and helpful. But later, as the pain problem persists and reactions change, the effect may not be favorable. The person in pain may come to feel like a burden on family, and his or her sense of being a valued family member is lost. Self-esteem may suffer. Without the expectation and reward of functioning as a breadmaker or a breadwinner, the dysfunction is compounded. Scientific research supports the idea that overly solicitous or helpful responses by a spouse can actually lead to higher levels of pain and disability. In effect, a person's experience of pain itself can be influenced by his or her spouse's behavior..."
 
Chronic Pain: A Burden Often Shared
 

"...Healthy family members are often overworked from assuming the duties of the person in pain. They have little time and energy for friends and other diversions, and they may fret over how to make ends meet when expenses rise and family incomes shrink.

It is easy to see how tempers can flare at the slightest provocation. The combination of unrelieved suffering on the one hand and constant stress and fatigue on the other can be highly volatile, even among the most loving couples..."

"Family members are rarely considered by doctors who treat pain," said Dennis C. Turk, a pain management researcher at the University of Washington in Seattle. "Yet a study we did found that family members were up to four times..."

Chronic Pain And The Family - Interview Mark Disorbio, EdD

~~> Chronic Pain and Family: Interview

"....Like most chronic conditions, persistent pain takes a toll on family members, friends and support systems. However you define family, chronic pain changes the dynamics within the family. Daily routines may change because the person in pain may no longer function in the manner he or she used to, which increases the demands on other family members. Family members may experience caregiver fatigue. Every family member may experience increased stress and feelings of guilt, sadness, fear, anger, and anxiety..."

Jennifer Jaff Explains How to Manage Chronic Pain in the Workplace

~~> How to Manage Chronic Pain in the Workplace

Q: How does the Americans with Disabilities Act (ADA) apply to people with chronic pain?

A: The ADA is a law that prohibits discrimination in employment on the basis of disability. It applies to employers with 15 or more employees. The ADA is intended to require employers to provide equal opportunities to employees with disabilities by requiring them to provide reasonable accommodations to such employees, and by prohibiting them from taking any adverse employment action against such employees on the basis of their disability. So the ADA allows patients with chronic pain to request reasonable accommodations that allow them to work despite their disability. For example, a patient with chronic pain from typing can request a voice-activated computer.

Helpful Tips and Ideas

Chronic Pain and Family Resources
Coping
Chronic Pain and the Family
How to Handle a Chronic Illness at Work

What to Do

There are many things that family members and friends can do to facilitate improved adaptation to chronic pain in the affected person. A helpful approach begins with learning about the pain problem and behaviorally based rehabilitative principles. There are many sources for reliable information from books and on the Internet. In addition, you can:

  • Participate actively in the health care of your loved one
  • Attend visits with the treating physician so that you can hear first hand about the pain problem and treatment
  • Prepare questions in advance, and ask about ways to improve function
 

TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

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Blessedx8
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Date Joined Aug 2008
Total Posts : 3193
   Posted 4/10/2011 7:17 PM (GMT -6)   
 
Effects on Family - frustration over seeing me sick and in pain; frustration at times over my limitations.... but - mostly - they've been taught patience and compassion for others, in a way that I don't think they would have if I wasn't so ill.  They've learned to help out - cook dinner, pick up the house, pitch in - when needed (isn't that what family is supposed to do?).  They've learned that life isn't a straight and narrow road.  It's strengthened their faith.  So, there's been some definite negatives and it's not been easy.... but the positives have far outweighed the negatives (that being said, I'd trade it all in to be healthy!!) :)
 
Friends - different story.  I think Susie (Straydog) said something one time that really said it all.  When you are chronically ill - you learn who your friends are and who just the "acquaintances" were.  I've shared this before.  My life was full of people that I called friends.  When I first got ill - I had people bringing us meals, helping do a zillion things and so forth.  When my illness didn't go away, slowly by slowly, those people dropped out of my life.  I wasn't the same person anymore.  I couldn't go do things....shoot, even a 1/2 hour conversation would put me in bed.  As time went on, I realized I could count my TRUE, true friends on one hand.  I had a hard time w/ this one for a long time.... but now?  I wouldn't have it any other way.  I don't have the time/energy to be anything other than "me" - take it or leave it. 
 
I'm an "at-home" mom so I don't have co-workers (well, unless you count all these little people!).  Before I got ill, I did have a part-time job at church and volunteered in many, many things.... but I just can't do those things anymore.  Most days, it's all I can do to keep my head above water.
 
Chronic pain/illness changes life.  Most days, I've accepted this new "life"...but I still have my moments of thinking "what could have been".  All in all, though, I just try to make the best of what it is and find peace for where I'm at today.
 
--Tina
Many, many health and pain issues.
Many meds - including Atenolol, Effexor, MS Contin, Dilaudid, Actiq (oral Fentanyl), Soma, Vitamin D, Iron (for anemia), Synthroid...and on the list goes.
Personal: I'm a Christian wife and mother; I have six sons and identical twin daughters.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5005
   Posted 4/11/2011 8:18 AM (GMT -6)   
Thanks for the post, Dani -

I've long ago given up pestering family and friends, had to retire from working or doing anything outside our property. The part of the article that I want to investigate further is Coping. I've been fighting for a cure or at least alleviation, but there is none.

I'm working on getting better educated, but unfortunately have found no palliation. All the information leads back to learning to live with the pain - Coping. It's depressing!

Finding support - There is none locally. Friends and family don't want to hear anymore. I don't blame them. I was in their shoes. My docs even want quick fixes; only one has kept trying for more than a couple of visits. Forum people are the only ones who can handle the daily complaints.

I've got a pain doc appt coming up. I already keep a very complete journal of pain, meds, foods, reactions. Since my simple med list with reactions doesn't seem to be interesting to any of my docs, I'll should write up a list by specific pain and the different treatments, as mentioned in the post. Maybe a nice landscape table with boxes. I wish I had an idea for a template. If this doesn't work though, I have no further way of communicating. I'm hoping to spark his interest in having me try a different combination of medications because the current tramadol is inadequate. I can't add anything because everything I've tried either doesn't work or gives me serotonin syndrome when I have had a tramadol withing 24 hours. My drug intolerance list is now up to 1 1/2 pages, and another page of OTC meds.

But thanks Dani, for the post. It made me think and gives a bit of hope.
Alcie
 
 

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 4/12/2011 10:27 AM (GMT -6)   
How has your chronic pain effected your Family?
 
   I want so much to say that it had a positive effect.. but initially it did not. 
 
   They did not understand why Mommy couldn’t walk very well. Why did Mommy always have to stop and rest? They did not like having to pick up their own toys and put them in their bins (separated by toy type of course). Why wasn’t Mommy helping and making a game out of picking up toys? Why did Mommy need naps anyway? How come Mommy cant just pick us up? How come we have to stand on furniture for Mommy to pick us up? Were not supposed to stand on the furniture...  So, in all fairness I understood their confusion and their anxiety. Things had changed. 
 
    So, honesty is the best policy. I told them how Mommy was sick, where Mommy was sick. I showed them my X rays. Told them what happens to make Mommy tired and have to rest. You know what they told me? "How come you didn’t tell us Mommy?" my oldest asked. Then I took them to my doctors visits with me, let them meet my doctors and ask my doctors any questions they had. All of it was explained in terms that they could understand. So it was not scary. Then we began to learn new ways to do the old stuff we used to do. 
 
     My husband, bless him, is spoiled. In all fairness I did it myself. Serve him breakfast (dinner really) in bed. All of his life perfect and taken care of. Yard, home, all of his needs, child rearing. All aspect of home management and general care of everyone. It never occurred to me that he had no clue how to manage a home or tend the children. I would be unable to take care of the household... The next day, would find the dishes undone, countertops a mess, children wearing weekend clothing during a school day,  bathrooms littered with discarded towels, laundry room.... well, I am sure you know where this is going. It literally took the same avenue. He was allowed complete access to my doctors (I even signed waivers) so he could ask any questions, day or night. It helped him to better understand. But it did work out okay. If I go down I know he can do basics.
 
    Now the rest of his family was not receptive. The comments are like horrible recordings I can still hear, to this day, clear as crystal. Even when I went to visit them last summer, I remember his mother saying "you know it doesn’t look THAT bad....". The expectations completely unrealistic. Some are just incapable of that level of compassion for longer than a few minutes. Which is fine. His father and step mother on the other hand are very understanding, very supportive. Like my husband and children they simply did not understand. I really appreciate their support.
 
      
How has your chronic pain effected your friends?
 
    I was told terrible things. My friends comparing their own illnesses to me and letting me know, flat out, I needed to stop whining. Once I found out what was happening to my body , the cause of my pain.. their guilt and shame had them running. Really, perhaps it is better that way. One nice thing about being this sick...  I don't have to waste time on meaningless relationships. 
 
    As a result the friendships I have now are very meaningful. Very real. Very understanding. I wouldn’t have it any other way. I wonder many times why I ever lived such a long portion of my life without such  heart felt friendships? Though I am sorry it took me being sick to find out what true friendships are... I am grateful, humbled and blessed to have the friendships I have now. No judgment, no ridicule. Just understanding. Support and love. I am very blessed.
 
How has your chronic pain effected your co-workers or co-volunteers?
 
    This aspect was received very well. I was unable to donate quite so much time to my community. Instead I just shifted my role. I cannot stand and do ticket sales, but I can make candy by the truck loads. I cannot assist in class room activities, but I can donate the materials and contribute to funds. I cannot fund raise in major events but I can fund raise in my own personal community.  I cannot assist in the physical aspect, but I can assist with basic tasks and can donate time on certain days. Everyone understand and knows there are times when I cannot do much do to my illness (progressive problems). 

TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

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