I think when talking to normals you have to emphasize the "chronic" part. Everybody has pain, and at a certain age many people have some part of their body that hurts often. But you have to explain that it NEVER goes away.
Sometimes I explain it like a little kid that follows you around and whispers "pain" in your ear every 5 seconds. Could you get used to that? Could you sleep well? What about after 10 years?
I also learned to stop saying I injured my back, now I say I have a spinal injury, for some reason that works better.
I love the analogy about the whispering kid. That is probably the most simplistic, yet most accurate description I've heard.
About analogy i have to say it is logic, maths a form of reasoning in which a similarity between two or more things is inferred from a known similarity between them in other respects
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I'm so glad that I found this site!
I have chronic, burning pain all over my body after being in an auto accident. I really am interested in talking to other people who also have this same condition.
My friends and family don't understand it because they don't have this condition. They mean well, and think if I move around more, it'll go away! On my bad days, they want me to still move around more because "no pain,no gain".
I am now being forced to look for employment with many work related restrictions when I'm struggling with being able to do even simple things such as shower or prepare a meal. Yes, w/c is unfortunately involved. I don't want to make this about that end of it though.
I am trying to be positive and looking into all of my options with my situation, but it is hard. It is much easier to talk with other people who have a clear sense of what people with chronic pain struggle with on a day to day basis.
Someone in here had shared this with me before- not sure if it was Tam??? Thank you for sharing it with everyone !! I think it is very helpful.
I feel like the letter's author some days. Like all of us, I have good days and bad days. A few years ago I had to go through marriage counseling because my wife couldn't understand that after standing at work 10 hours a day and driving an hour each way I would have to lay down when I got home. Thank god she can understand it a little better now, although she's not always happy about it. I guess I'm lucky because most of my friends and co-workers are sympathetic to my condition. I really do try to do as much as I can, but sometimes the pain is just too intense. It really stinks that I have become used to the pain and I can work through it. I just hope that someday I'll have disk replacement and I'll get some relief.
I continue to go through the family and friends issue regarding my situation and somedays it is good, others bad. I am thankful for them, however, and they have always been at my side but somedays, they forget or they even deny that I have any problems; they actually go through one of the "recovery Stages" for me in that they deny it exists.
All the surgeries, all the pills, all the shots, all the tests.... it is exhausting and demoralizing but we must persevere or we will die.... I choose to persevere even if sometimes it is the hardest choice to make and I can only put minimal effort into it at a given time.
I have decided in the last year or so to not offer any information about how I feel or what I am thinking to my family (outside my wife). I figure, if I look or sound really horrible on a given day and they ask me, they really are concerned and want to talk with me, and at that point, I do.
We are here to tell our stories and and release emotional / physical stress; mostly, we are here to listen and offer advice based on our own experiences, good or bad. The majority of us are not here to criticize, ridicule, or judge; that is just counter-productive and quite frankly, mean.
I truly hope we can be a support mechanism for you. Hang on, stay strong, and live for you... see you on the boards.
i love this post i have read it before and copyed somewhere else and posted it in my blog for some my family to read it
I have been suffering, struggling, surviving and recreating myself for the past 4 years of chronic pain. I have had a double spinal fusion and now an ANS neurostim device implant since May 2010. Prior to that I had a lamin/ disc. I am done with the surgery cr###p!
Way too many surgeries! And people don't see the struggle people with chronic back or related pain go through because usually we aren't in wheel chairs, missing a leg or arm... so they assume everything ok.
All my treatments ( western and alternative) have helped to some extent and still I realize that I am going to adjust my lifestyle to fit what my body can now do- which does not mean I intend to give up striving for more, and for less pain.
What it means for me, is that I am going to stop beating myself up for not being who I was.
Instead I am working hard to recreate myself in a positive way, because I will not give in to a "bad " or "less than life".
Candidly, while my family cares, they will never totally understand. How can they unless they have the experience which I would never wish on anyone.
My soon to be ex husband was never very supportive and when I refused to just suffer through the pain to suit him, the marriage was over.
I simply wouldn't struggle to do what was hurting me anymore. This chronic pain has helped me set boundaries that I never realized I had allowed to be breached. a
I had the ANS device put in because I could not deal with being zoned out on pain killers with the work that I do. I am now getting by with two advil or equivalent so I am feeling pretty good- but it is early days.
I am often exhausted with all the surgeries, and there are days when I really have to struggle to get out of "blues" and resentment of memory loss etc.
I had been a very strong "in my body" athletic, strong, sporty type person. I have to modify what I can do, and for how long I can do it.
So chronic pain seems to be one of my major challenges and learning edges- and I am so glad of the forum to be able to share with others. I can finally sit long enough to participate and hope to show up more often.
Thanks to everyone who shares here. No easy answers, but lots of support and caring.
The OP really expressed thoughts that I feel but hadn't put together, hadn't verbalized or compiled mentally. I'm as tired of discussing it as the people in my life are, of asking about it. I don't care anymore about comments like, "You just want the P-K's" and "You want some Midol with your painkiller?" (I'm a male). It's just the people I love, that I care what they think about me, anymore. The depression is just as bad as the pain.
It REALLY helps to just read, about people who go through the same things. I may not know any of you, but I appreciate the time you take, not just to vent and express your frustrations, but to let us lurkers know that there are others out there like ourselves.