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The Weight of it All

dilaurodilauro ConnecticutPosts: 9,842
edited 06/11/2012 - 8:44 AM in Depression and Coping
I know we've touched on this topic several times in the forums, but with so many new members, I think its something we can bring up again.

I think most of us understand the physical aspect of what chronic pain can do. And just to be clear, I am talking more than just the text book definition of chronic pain, I am talking about people that live this for years.

The emotional aspect, well, that can be much more difficult.
We may not be the best judges of our actions and not being that objective. When you are dealing with pain and everything that is associated with it, your mind can easily be clouded and block out what may seem to be the norm.

Relationships suffer, people can get depressed, so much can happen and much of it is not positive.

Thats why I have always believed that people who live in chronic pain become strong people. We may not start out that way, we may be depressed at first, angry at things, who knows, but in time, we realize what is important and what is not.

It always bothers me when I read a post about a relationship that goes sour because one of the people involved is a chronic pain sufferer. How can you reach out to someone who has no idea what that is about? Can you explain it to them?

And then on the flip side, how can a chronic pain patient understand all what their loved ones have to go through.
There are sacrifices, some very big, some easy to cope with.

We basically all understand when its time to see doctors that deal with our physical pain, but do we always understand when its time to seek out professionals that can help us with the emotional strains and pressures?

That to me, is the more difficult to approach.
Ron DiLauro Spine-Health System Administrator
I am not a medical professional. I comment on personal experiences
You can email me at: rdilauro@veritashealth.com


  • Ron,

    The aspects of chronic pain, as a whole, are so hard to understand. Great post.

  • it is only after years and years of my living in chronic pain that i have seen the toll it takes on my husband. after 30 years he is tired and exhausted from the doctor visits and crying and pain and well you all know what it is about.. but the caregiver's pain is often not seen right away.. and for me, it has come at a very high price, the health of my spouse.. both emotional and physical.. it is only now that i am able to reach out to him and look beyond myself to him in his time of need.i have come to terms with my pain and stettled with it! this has brought some relief into the household.. please, pay attention to your caregiver!! they are often in need just as we are!! Jenny :)
  • Ron,
    For the most part that weight develops inadvertently and impacts in all our competence, once we have to make changes to live with the pain that momentum usually means that when we seek out help, we are in need of reversing those issues that have developed and find a more compatible plan.

    SH patients are becoming more astute at when they need help and can see those initial traits of behaviour or thoughts that may indicate then need additional help and support at any given time. We all perhaps set off thinking we can manage the totality of it all and it comes as something of a shock to us that nobody could endure all these imposed changes and restrictions and not come through unscathed.

    I do try to make up for the things that my wife and I can no longer do in the notion that I too feel that collective loss, we all have an extended list of things we once did independently or together and both our lists are of equal length. I have a duty in not making them feel guilty for not experiencing my pain and do try to protect all my children from the true weight of it all, they are entitled to live an existence not fully tainted from my condition.

    Relationships always have challenging times and the inclusion of chronic pain a testament to how hard we are working together, pain sometimes seems worse when we are down and the same pain less when we have an improving approach, as has been said before, my wife did not pick this lifestyle and I have shed a tear for her loss.

    In knowing what may happen in the future, from the evidence of others here, we are more prepared in what to expect and make plans for dealing with those accumulative issues in the hope that it may displace the overall impact. I have learned to relinquish some of those inherent burdens and may have replaced them with others, but the total weight and that element that is manageable is my responsibility and with guided help and the right support I continue to reduce that pressure.

    Take care.


  • Compensation is a funny word. Depending on your point of view it can bring different things to mind. If you work in a physical job you probably think of workers compensation which will take care of you if you get hurt at work. If you work independently you may think of it as pay for work that you do.

    But if you have health issues that limit your abilities then compensation is what you do to get through each day. When we use a grabber to get something off the floor or a shower chair to take a shower this is compensation.

    The definition of compensation is the exchange of one thing of value for another thing of similar value.

    This relates to our interation with people also. If we used to go to the movies with a spouse now we may do movie nights at home instead. If we used to take the kids to all their sports events we might go to one a week and bring lots of cushions and take walks around the field.

    Where we often get off track is rebalancing our lives. If we can't go to all those games with the kids maybe we can do something else to participate in their lives. Maybe make the phone calls that seem to be endless in kids activities. Or making special snacks for the team. Or getting grandparents to go in your place.

    We may be confined to the house more than before. We may be spending lots of time in the recliner or on the couch. But what can we do with that time to compensate for what we used to do for our family and friends?

    And don't think this is a one for one compensation. Since I have been home I started scanning my mother-in-laws pictures. The plan is to make CDs for everyone in the family. So this boring job is something I can do as I sit in the house. I do a half hour or so at a time.

    If we stop thinking about what we can't do we will have lots of time to think about what we CAN DO!!
  • dilaurodilauro ConnecticutPosts: 9,842
    While basically, all of us understand the situation, but we have different twists on it, which works for us as individuals.

    Many times, I've looked at this as sort of like my checking account. We make debits and we spend our credits. When we put more debits in, we can take out (spend) more credits. As long as we continue to put in debits, we should arrive at a common plane.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Kris,
    It is understood that our lives have changed and although we would like to swap aspects of equal value that is not always possible and the things we were once able to do are on the decline. We have to make those things that we can do now as valid and carry the same status for us, even thought they were the measure of who we once were, as you say doing alternatives and looking for opportunities helps us move ahead.

    It now takes more effort to do less and we know how hard succeeding with the smaller achievements has become, imposed change has altered what we can do and it is of no support in trying to do the impossible, which just reminds us how difficult things are and our dilemma, we need positive reinforcement. However inconsequential our new goals may seem they are what we can achieve and give us that confidence that we have some control and progressing. Although the practicality of doing some things stops in what seems a short period, accepting those changes take longer if at all, we cling onto who we were in the vain hope that we may be that same person once again. It is strength to know your limitations and not a weakness.

    As said, many reflect on what they can no longer do rather than what is possible, we are not the same person so attempting to define who we are now based on historic goals is counter-productive, it sets up a small circle of failure, I have learned to acknowledge and appreciate all the new things I can do that were not part of my lifestyle when I was fit, pain determines that I need to put more in now than I get out, and it is not an equal trade, as it once might have been.

    It needs constant monitoring and evaluation to stop that accumulative weight from impacting on our overall well being and those occasional tweaks align us in a more harmonious and appropriate direction. Having experienced depression I am now more aware of how that collective weight came together and over time impacted on my health, I try to find improvement for each layer that makes up my own version of chronic pain and work on them to minimise the chance of that condition returning.

    In our PM residential we were timed over a short walking distance and then expected to improve that every day, it was a good lesson is setting individual goals and it was not the best time that was the goal, but each individual improving.

    Take care John.
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