Dockside,

The only word that came to my mind when I read your post was "Acceptance"

There are so many things about life, especially life with chronic pain that we simply cannot change- at least all at once- that acceptance is the Only way to survive and remain sane. (I'm preaching this to myself ya know cuz I need the reminder too!)

If we can change one. small. thing. at a time. we should be extremely proud of our efforts and know that we are doing our best, "leave the rest with our Lord."

We have to have grace for ourselves. Goodness knows, nobody else might! Accepting our limitations and resting within those boundaries- pressing for goals and change where we can. 

My heart stung when you mentioned being isolated and people keeping a distance from you- I felt that you were speaking the narrative of my life~ and yet ~ it is true, most people who do not Know chronic illness or pain simply do not know how to deal with it and so- they flee. Fair weather friends are still friends- they just can't be trusted with the weighter issues! Maybe it's fair enough to say they want to love but they don't know how. They're scared. They feel inadequate. Uncomfortable, guilty, helpless ???

I dunno. (I admit- I've been a baD girl at times and prayed for certain people to have more pain or adversity in their lives so they would learn a little more grace!) Forgive me Lord!

As for the reason for our pain- the fall- I believe- brought sin and sickness to mankind as a whole and the rain falls on the just and the unjust! But God promises to work/ use all things together for our good- if we belong to Him, and he does. *ultimately* we are fashioned- chiseled as to were like a raw diamond into a fine jewel, fit for heaven, in God's proper time.

I'm glad we met~ you may be the reason I'll try to return to the Grind- you're a very lovable, sincere person and I want you to know I appreciate you*

From somewhere over the rainbow,

zoe

dockside

12/28/08 11:20am

Hi Zoe,

I am so glad to hear from you.  I love how you write from the heart.  You are right about acceptance.  This is key.   I am working hard on accepting me as I am now and slowly I am learning to accept my new (2 ½ years) life of living with pain.  It is so hard because I struggle with the idea / thought that acceptance does not mean "giving up".  I am learning to accept my circumstances while still searching for answers and new treatments to try to "get better".

 

I am also learning to accept that my "fair weather friends" as you say, still do care about me.  I have felt so rejected by them that I couldn't see it from their viewpoint.  You are right, they can't cope with my situation.  It is difficult for them to even talk to me on the phone simply because they have no concept of how pain can be acute for so long or change daily. 

 

I must admit, prior to the start of my nerve pain, I had back problems and would work through them and continue on with my activities and life.  Like most people, I thought of my body as being somewhat mechanical.......If some part of the body is not working properly or is broken, in this day and age, we go to the doctor and get it fixed or replaced (like a knee).  So, I think my friends and family can't understand why I can't just get it fixed.  I suppose I need to just accept that no matter what I say or do to try to explain this, "they" won't be able to accept my circumstances or me......which in turn means avoidance by them, rather than inclusive thinking.   

 

I also think to myself, I have to be clear with my self first about realistic activities.  I have difficulty with this because some days I can do so much more than other days which talks to the idea of being unreliable in the eyes of my friends and family........and to be honest, I am unreliable!

 

Thank you again for writing.  Your thoughts are helping me to work all this out.  I do hope, when you are ready, you come back to the Grind.

Take care of yourself, Zoe.  You are a very special person.

Deb

leighla

1/ 1/09 10:09am

Hi Deb,

 

I don't know what your condition is, or what is causing your pain, but whatever it is, you do not deserve to be abandoned. It is sad that our culture has what practically amount to taboos about talking about problems, and disabilities. We hide from anyone who cannot work themselves to the bone, as if the only value that is really acceptable is the ability and drive to work hard. This is our legacy from the Puritans, and while it helped our founders forge this new country, it has prevailed in a way that is I think ultimately detrimental for our society.

 

My family and friends have kept their distance from me also, and the emotional pain of isolation compounds the physical pain. In fact, I believe that it is really hard to heal and feel well being alone too much. Being judged and not accepted for who we are and what we experience is a terrible experience, and not our fault.

 

You have done nothing wrong. Don't beat up on yourself, and stay in touch with people on-line. Maybe one day people who live near one another can meet.

 

Can your friends and family visit you? So much sounds like it hinges on you having to go out alot.....if that's unrealistic perhaps you could invite people over for short visits ...a cup of tea, a sandwich, to watch a favorite tv show together.

 

Chronic conditions are very hard for people to understand and accept because there is no dialogue in our culture around these issues.

 

Anyway, I just wanted to say, hang in there. Your letter was beautiful, warm and caring, and your questions thought-provoking. And I pray that some day, soon, very soon, your pain may abate or a remedy be found.

 

Blessings for the New Year,

Leigh

dockside

1/18/09 8:47pm

Hi Leigh,

I first want to apologize for my tardy reply.  I usually respond right away.  It seems that since New Years, I have been going through a period of personal growth and part of it included trying to express what so many of us go through because our friends and family don't understand even the basic concepts of acute chronic pain.

 

I idealistically, charged forward to find pain charts and other resources to make it easier for non pain sufferers to understand.  At a time when I was feeling more self-confident or self-accepting of my situation, I sent out emails to my close friends and family explaining about pain and attaching other information documents.  All of my children did not acknowledge the email, another person interpreted it as a request for help, one of my step children took the opportunity to express harshly his emotional pain because I married his father 20 years ago and a couple of people understood what I was trying to say........ which I will always cherish.

 

The net result of this experiment, for me, was more negative than positive.  The net change in our interactions was zero.  So sadly, I don't think it was worth my effort.  I think the only people who really understand are those of us who share similar conditions which cause pain to be with us 24/7. 

 

This is a long way around to say thank-you for your comments to my sharepost.  You commented about how my interactions with friends seems to depend on my going out, this is because I live in a rural area.  The neighbouring villages are 15-30 minutes away, just far enough that it is difficult to just drop by.  In the summer, I am happy with my home and can do short visits with friends but the winter months in Quebec are very long when you can't participate in winter sports or sometimes get out of the driveway let alone walk to the car on icy paths.

 

Again, thank you Leigh for writing,

Sincerely,

Deborah

Dear Dockside, My heart is breaking for you and the 3 others who have commented on your post so far.  I have lived with chronic pain since I was 12 years old, more than 40 years, and I relate to every thing you have all said.  

I may not be very clear in what I am trying to say, and if that's the case I apologize.  The bottom line, however, is that after many years I did come to accept the fact that I have a spinal condition that causes me to live with constant pain.  That pain has impacted on my life in myriad ways, and has caused me to change my plans and goals, give up on some dreams, lose some friends and forfeit loves, and all these years later it continues to affect what I do and how I do it. This seems to be what you have come to accept, and are struggling with what that acceptance means.

I think that to say we accept the fact that we live with chronic pain means that we also:

Accept that the medical profession doesn't know much about pain or pain management and needs to do more to bring the profession up to speed;

Accept that those who do not live in chronic pain will not understand what your life is like or what the pain does to you physically and emotionally;

Accept that if you want to maintain certain friendships then you may have to be the one to reach out to keep communications going or make plans to get together, accepting that in making those plans you will have to make clear there is a chance you will have to cancel;

Accept that no matter how much you reach out and try, there will be times when you are alone and lonely because basically it's no fun to be around someone in terrible pain so some people won't want to be around us too much when we are in our worst pain;

Accept that there will be times you will do things that you know will cause more pain later, but you do them anyway either because it's an emergency or you just want to have a little fun (I've been known to dance at weddings, using my crutches of course, knowing I will pay the piper in the morning—and it is worth it every time.);

Accept that you will need help at times and most likely you will have to ask for it; most people will not realize you need help unless you tell them;

Accept that if you have chronic pain there is a chance that you will have it for a long time, or maybe forever, and regardless of how frightening that is it is up to you to make the best life you can for yourself;

Accept...

There are many, many more things we have to accept while living with chronic pain, and we will do some better than others, at least I have managed to accept a few things better than others.  There are still those I refuse to accept, and as a result I usually end up flat on my back in even worse pain.  I appreciate this site and the ability to communicate with people, such as you, who are experiencing similar challenges in life, able to speak freely about them and your emotions, and seem willing to listen to me.  Thank you for that.  I hope you will take a look at some of my posts and comment on them as well.  

I always seem to be apologizing for the length of my comments, as I do now, however I realize they are so long only because the material in the post I am commenting on is so interesting and provocative.  Thank you.

dockside

1/18/09 9:00pm

Hi,

I am sorry it has taken me so long to write back to you.

 

You so beautifully expanded on the acceptance issue.  I guess it is a process we all have to go through individually.  With the help and experience of people like yourself it makes it easier for the newer members of the 24/7 pain club, like me.

 

The problem of accepting that cherished personal relationships may break down because we can no longer be who we used to be, still saddens me.  With time, I hope and pray their will be some resolution which will be acceptable to all parties.

 

Many many thanks for writing to me,

Sincerely,

Deborah