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    Old 08-04-2005, 12:37 PM   #1
    Drewtn
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    A Letter to Normals from a Person With Chronic Pain

    I read this and thought it was very helpful. Sorry if this is duplicate.
    Drew
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~

    A Letter to Normals from a Person With Chronic Pain

    Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

    In the spirit of informing those who wish to understand:
    These are the things that I would like you to understand about me before you judge me. Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time; I'd still like to hear you talk about yours, too.

    Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That’s all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

    Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

    **Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, it applies to everything. That's what chronic pain does to you.**

    Please understand that chronic pain is variable. It's quite possible (For many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

    Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it", may frustrate me to tears, and is not correct. If I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (Wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

    Please understand that if I say I have to, sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

    If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

    If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

    In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

    I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot. Understanding is the key that works for me!
    Adapted from a work by Bek Oberin God Bless You All!

     
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    Old 08-04-2005, 01:15 PM   #2
    sherrixyz
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    Re: A Letter to Normals from a Person With Chronic Pain

    That was awesome. I'm going to print it out.
    Thank you for posting it.

     
    Old 08-04-2005, 01:19 PM   #3
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    Re: A Letter to Normals from a Person With Chronic Pain

    I sent it to my family members and people who have to deal with my chronic pain. I'm glad you liked it as well as I did!!!

    Chronic pain and effects are hard to put into words.

     
    Old 08-04-2005, 01:20 PM   #4
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    Re: A Letter to Normals from a Person With Chronic Pain

    Wow, Very well said. To bad it can't be published or get the press that a doc prescribing diet pills to anyone that asks does.
    I choose to use diet pills because nobody is in the position of saying a quantity or dose is too much or more than required to manage any individuals pain, without examining the patients abilty to function, seeing their condition prior to medication. Measuring cognative awareness, general well being and improvement in quality of life is never mentioned. The cost and availability of certain strength meds isn't considered either when someone decides a number of pills prescribed is too many. Someone decides 450 pills a month is too much without any relavant information. For example a 4mg dilaudid costs 30 cents, a 12 mg LA dilaudid cost 12 dollars. Is it unreasonable that some folks don't have the money to take fewer high dose long acting meds?

    I've yet to met an addict whos drug of choice improved their quality of life.That's never an issue as docs and patients are judged, condemned, and presumed guilty before charges are even filed.
    Thanks Drew
    Take care, Dave

    Last edited by Shoreline; 08-05-2005 at 05:53 AM.

     
    Old 08-04-2005, 11:03 PM   #5
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    Re: A Letter to Normals from a Person With Chronic Pain

    ur correct shore the stigma that comes with trying to get help with pain is awful i know i often feel that i am doing somthing wrong just takeing half a 5 mg lortab and it dont even really help unless im a hermit coutch potatoe,my doc said somthing about takeing opites long term and i told him look as far as i am concerned ill do what ever helps all i know is i hurt bad and i need help,ill take help any way i can get it.if so called normals wanna lable me so be it.

     
    Old 08-05-2005, 11:11 AM   #6
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    Smile Re: A Letter to Normals from a Person With Chronic Pain

    This had a lot of really good thoughts in it, and I think I will print it out, too, and share it. One thing I would add to the "normals" is: Please don't say, "Oh, I have bad days, too." and especially, "but I have to get up and go to work anyway." I have a friend that said this to me. I know people may say "I have bad days, too." trying to sympathize, but it doesn't help at all. Having a bad day even 1 or 2 days a week is not the same as being in pain 24/7 365 days a year.

    In my friend's case, I actually think she may be a bit jealous because I "get to work at home" and "get to sleep in" and she has to get up at 4:30 a.m. and go to a job she doesn't like. She doesn't realize how I would love to be able to get up early or how frustrating it is stretch out what should be a part-time 4 or 5 hour a day job over 8, 9, or 10 hours and not have enough energy left over not to do much else at all. However, I am thankful to be able to work at all, as I know there are many out there who cannot, and I do have an exceptional husband who comes as close to truly understanding as another human being can.

    As for my friend, we did have a pretty big argument with me trying to "explain," but in the end I just forgave her and we are still friends, though I still don't think she understands. She has her own issues that I don't fully understand that are just as hard to bear for her as my pain is for me and so it probably goes with every human being.

    I didn't intend to ramble on, but I did want to say thank you for the post, hopefully it will help some others to understand. I know it made me feel "not so alone." Thanks for bringing out about the exhaustion, too. That's something I think people don't always understand about chronic pain, i.e., how tired it makes you, and then some of the meds just make you tireder, too.

    Have a positive day everyone!

    wren

     
    Old 08-05-2005, 12:00 PM   #7
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    Thumbs up Re: A Letter to Normals from a Person With Chronic Pain

    [C OLOR=Red]re:a letter to normals from a person with chronic pain[/COLOR]thi everyone, thank you so much for your posting .i have rsd and the pain is 24-7 everyday ,also i have never been able to explain to anybody family or friends what rsd sufferers go through . i do know that what people can;t see like a broken leg or arm is not real to them but when it is written on paper and they can read about it then it starts to change there way of thinking,so i am going to print this off and send it to anybody that i know and also some dr's many thanks again peace and freedom from pain chick58

     
    Old 08-06-2005, 12:27 AM   #8
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    Exclamation Re: A Letter to Normals from a Person With Chronic Pain

    Excellent letter, and great replies, too! Sorry if my spelling/grammer is a bit off, its late and Im having a bad spot of pain and sleeping issues...so bear with me, hehe. There are 3 things I read there that I completely identifiy with, that whenever the subject comes up about people in pain, seems to always turns into a never ending case of stupidity with some really ignorant people! Now granted, I probably have said some pretty stupid stuff and still probably do so occasionally, but there are some people who just EXCEL in this area.....and I think wrenegades post hit the nail on the head: They either act like they are "jealous" of us (which is so completely ridiculous because I would trade bodies with most of them in an instant) or they speak as if they dont believe someone is in pain unless there is literally something they can see wrong.....multiple large, ugly scars apparently dont count.

    I deal with this alot, actually, and so this is actually a sore subject for me, since I have a few relatives and friends who do this sort of thing to me on a regular basis. Its one thing when youre talking to someone who doesnt know much about what youve gone thru, but when youre getting that kind of attitude from someone who has seen what youve gone thru, its not just infuriating, its depressing. Ironically, I was just thinking about this stuff recently, after a little run-in with an old friend reminded me of these common situations disabled people go thru, but healthy people take for granted.

    Comments From:

    (1) The ignorant people who say stuff like "Mine is just as bad, if not worse."

    - I have a 'friend' just say this to me about 3 days ago, and I could not understand it! What bothers me most is he knows all I have gone thru, and has even visited me in the hospital on a few occasions and during recovery at home following surgeries. I try not to get mad at stuff like that, but, its hard not to. Especially when statements like that come from people who arent just being insensitive, theyre being mean because theyre unhappy with themselves.


    (2) The ignorant people who say things like "You SOUND better" or "You LOOK fine!"

    - Of course its just like the original poster alluded to---people saying it like youre not in pain if you can cope with it in ANY way or with ANY help. Like I said before, some people are just that ignorant that if youre not walking with an arrow hanging thru your head, they assume you are fine. Which is sort of connected to the third one that I have been thinking about....

    (3) The ignorant people who still expect you to do things that you just cannot or should not be doing!

    -As a man not yet in his forties, I deal with this more often than I care to think about. Just TODAY, I got a call from a relative asking me to help him REBUILD PART OF THE ROOF ON HIS HOUSE!!! Again, I just could not believe---or understand---the thinking going on in this persons mind!?!?! And again, this is from somebody who KNOWS what my situation is! Even after trying to explain this even when it shouldnt have to be, people like that just seem more concerned with what they need, think, or want.

    It is beyond aggravating, and I have ended relationships with people over this in the past. One ex-friend in particular, was becoming more & more obnoxious--like the original poster said, he was making judgemental comments, acting like a jerk and saying "I have pain, too..blah blah blah." He even went so far one day as telling me (in a mean tone) he would rather be disabled and in pain than have to go to work---he was angry because he hated his job, and that I wasnt working---AND saying this as I was laying on my couch recovering from my second surgery!!!---what a JOKE! Even if it had been said a year after one of my surgeries, it is still one of the most ignorant, self-centered, and insensitive comments I have ever heard somebody say! There is no excuse for that kind of behavior, and now I have even less patience with people about it because of things like this! Even as I told him the PITIFUL money I get on disability, he just couldnt see past his own situation and experience, like Im discovering is the case with alot of people in this life. Obviously he was just another ignorant moron but we had been friends forever, and I thought maybe he would snap out of it once he changed jobs, or quit hating his OWN life so much (His wife was/Is a controlling nightmare of a woman)! I tried to be understanding on my end and put up with alot more than I will bother typing, Yet even after he was in a better job, and was in counciling with his wife, somehow it still got worse, and finally one night when I wouldnt go help him move his furniture (wow, huh?), we had a huge arguement and I quit talking to him after that. And to top it off, he tells a relative of mine later on that he just didnt understand why I wouldnt call him back!! LOL!!

    Sorry to rant, but I have been dealing with these situations and feelings for awhile now. I am glad that this post was here. As usual, having other people in similar situations to relate to, makes me feel a whole lot better---just being able to think to myself, "there really really are other people out there going thru this right now, too!" The things that were mentioned in that letter.....obviously struck a cord with me, lol.

    I guess its something were going to have to find a way of dealing with, just like the pain. Because as long as there are people out there who are unhappy with themselves, or angry at the world, we will be in the crosshairs. So, Thanks for posting this, and thanks to anyone reading my little rant as well, lol, it feels good to get it off my chest!! Take care everyone, and GOD Bless!

    Last edited by Phlox; 08-06-2005 at 12:53 AM.

     
    Old 08-06-2005, 05:57 PM   #9
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    Re: A Letter to Normals from a Person With Chronic Pain

    Hi Drew
    The letter to normals was a great thing to post here. I just hope it helps. I have tried everything to show the people in my life what its like for me but they still dont get it. Im almost to the point where I give up and i know u know what I mean. I also intend to print the letter and pass it on to my family. Thanks for the post.
    MsHatch

     
    Old 08-06-2005, 11:39 PM   #10
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    Re: A Letter to Normals from a Person With Chronic Pain

    and i will add that before my injury i was one of those normals we r now speaking of and i am very sorry,and ashamed of my prior attitude. i now know just how wrong i was.since my injury i have hurt 24/7 for a year now i never knew anyone could stand pain so long. its drained me mentaly and phisicaly.

    Last edited by tracer; 08-06-2005 at 11:44 PM. Reason: ad on

     
    Old 08-07-2005, 01:36 PM   #11
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    Re: A Letter to Normals from a Person With Chronic Pain

    Powerful thoughts here folks. There are a few people that will recieve this "Open Letter" from me. I once had a friend, well my Wife's friend, who said that If I really wanted to, I could make it (the pain) go away with my mind. She went on to say that pain was a state of mind and it can be controled. I about came out of my skin. There are few on this planet that have that much control over their mind and state of being......Im not one of them.

    Since my pain came to be, which was only 3 years ago so I am not sure if its "chronic", I have too had many people make the stupid comments. Being a former athelete in a family with 5 older brother has made it really difficult. I get the phone calls and you can here it in their voices. Its like I spranged an ankle playing basketball at the park. I explain to them its a little more serious than that. I often wonder, are their thoughts a product of not knowing what chronic pains is or is it that they just dont want to admit to themselves that their little brother is hurting 24/7. Im sure its a measure of both. Ignorance and denial.

    The only person who truely believes in what I am going through is my Wife and for that, I am a lucky man.
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    Old 08-09-2005, 02:46 AM   #12
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    Re: A Letter to Normals from a Person With Chronic Pain

    Drew, You letter is excellent. Thank you.

    Alexander Solzhenitsyn, the Soviet dissident who spent time—7 years, I believe—in a Soviet Gulag and worked in sub-zero weather, asked (and this is a paraphrase), “How can a man who is warm understand what it feels like to be freezing?”

    Of course, it is impossible for the warm man to understand what it feels like to be freezing. That was Solzhenitsyn’s point.

    We might ask (in a nice way), “How can a person that is not in pain understand what it feels like to be in constant pain?”

    Of course, a person in no pain cannot possibly understand what it feels like to hurt constantly. The “I understand-type statements” once bothered me. Now, they do not, for I realize the person who has made that statement cannot understand.

    I see a LPC (she does help me). A good friend said, “Anyone would need to see a LPC if they stayed around the house as much as you do.”

    Admittedly, that hurt. I wanted to lash out at my friend, but I did not. In fact, I did not respond at all, because my friend—who enjoys good health—simply made an ignorant statement because she has never walked in my shoes.

     
    Old 08-09-2005, 03:08 AM   #13
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    Re: A Letter to Normals from a Person With Chronic Pain

    Quote:
    The only person who truely believes in what I am going through is my Wife and for that, I am a lucky man.
    BilboCameron,

    Yes, if your wife believes what you are going through, then you are a fortunate man. My wife believes in me, and for that, I am thankful.

    BilboCameron, 3 years of 24/7 pain is assuredly “chronic.” I am sorry that you hurt 24/7, and I can understand it. But your siblings cannot possibly understand what you are going through, so try—as hard as it is—not choke them.

    I have a similar situation with my big brother (who is my only sibling). He knows something is wrong with me, but he still believes that I should just be able to “overcome” the pain.

    I have learned from people who say “I understand how you feel” when they are clueless. EXAMPLE: When I go to the funeral of a person who has lost their mom or dad, I do NOT say “I understand how you feel.” Before the Plague (RSDS) came to live with me, I probably said stupid things like that. No more do I make stupid statements like that.

     
    Old 08-17-2005, 09:01 AM   #14
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    Re: A Letter to Normals from a Person With Chronic Pain

    Oh, My God! I read this and felt as if I had written it myself!

    Thank you for posting it.
    Tai

     
    Old 11-29-2005, 07:53 AM   #15
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    Re: A Letter to Normals from a Person With Chronic Pain

    I wanted to bump this up for those of you who are experiencing problems with people not understanding how you feel or what you are going through.

    Take care,
    Drew

     
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