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From Someone With Chronic Pain


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#1 John Berfelo

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Posted 28 November 2010 - 01:53 AM

To my Dear Friends and Family and all the other Normal People in my Life, 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 school, 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 smoke a joint in public 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 understand 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 to 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 Cannabis takes the edge of my pain Helps me get through my days It is about the only relief I get If you can relate to the words above And have not tried cannabis It’s about time you did!! IT WILL WORK!! It helps alleviate your pain levels. It gives me a change to live my Life every day. _________________________ Peace John B :party time:
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#2 Itinkso

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Posted 28 November 2010 - 05:26 AM

i have a copy of this that a good friend sent me......i try to bear the points in mind every day.....thanks for posting it john!!
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#3 Guest_Colotracy_*

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Posted 29 November 2010 - 04:35 PM

Anyway someone can email this message?, I am in constant chronic pain and this is probably the best descriptive written expression I have seen, seriously brought me to tears and I would like to share with some others if that is ok and possible. Thanks again

#4 Itinkso

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Posted 29 November 2010 - 04:38 PM

Anyway someone can email this message?, I am in constant chronic pain and this is probably the best descriptive written expression I have seen, seriously brought me to tears and I would like to share with some others if that is ok and possible. Thanks again

i just emailed it to you colotracy.......feel free to share!!!
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#5 Guest_Colotracy_*

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Posted 29 November 2010 - 06:46 PM

i just emailed it to you colotracy.......feel free to share!!!

Thank you so much, I really appreciate it!

#6 GTGFamilyFarm

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Posted 02 December 2010 - 11:59 AM

WOW.....As I was reading that it felt as if I was reading my own thoughts or something I wrote.......My feelings exactly!
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#7 jangel

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Posted 02 December 2010 - 12:48 PM

We that are some what healthy feel for those we help here. We cannot walk in your shoes, but believe me, we do try very hard to understand. Thank you so much for posting this John. Peace
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#8 mediuse

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Posted 03 December 2010 - 12:28 AM

John...you've summed up so much in a short space....and dead on the money! Cannoy offer a cure...won't offer platitudes...but I will say, In this...your pain and suffering, you are not alone....I for one, underfstand appreciate  and feel the pain you describe and the difficulties th@ ensue. muA
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#9 DEBhasgrn

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Posted 03 December 2010 - 02:29 AM

Oh so very true.
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#10 Itinkso

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Posted 03 December 2010 - 03:58 AM

Thank you so much, I really appreciate it!

LOL....you are very welcome!!! B)
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#11 DEBhasgrn

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Posted 03 December 2010 - 04:42 AM

Copied and pasted and sending it to my doctor,maybe she will think about the human side of it all.
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#12 PoeticLife

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Posted 23 December 2010 - 05:17 PM

Copied and pasted and sending it to my doctor,maybe she will think about the human side of it all.


Some people who had sent this to me thru a Lupus group called it "Letter To Normals" its still as true as the first time I read it. Thanks for sharing it.
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#13 Itinkso

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Posted 26 January 2011 - 05:27 PM

bump!!
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#14 John Berfelo

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Posted 26 January 2011 - 11:56 PM

Some people who had sent this to me thru a Lupus group called it "Letter To Normals" its still as true as the first time I read it. Thanks for sharing it.


I read the poem 5 years ago from a friend that was suffering and had left it in my e-mail..
I have shared it with many and everyone needs to read this poem to better understand chronic pain sufferers..
Peace John B
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#15 DoobieDuck

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Posted 31 January 2011 - 11:22 AM

John thanks for sharing, for sufferers like us it doesn't matter how many times we've seen or read this. it still musters up a tear each time. Good luck my friend..DD
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#16 pappy666

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Posted 31 January 2011 - 09:12 PM

God bless you. I know that pain.
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Posted 13 February 2011 - 06:35 PM

Thank you John.... YOU UNDERSTAND! (as well as the others with pain)

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Posted 04 October 2011 - 07:54 PM

Wow, difficult to type after reading that. I have lived that. It's not as bad now, but it is still bad, but the smile throws everyone off. Thank you for this. It has helped me.

#19 tikidood

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Posted 30 December 2011 - 02:40 PM

Thanks John for verbalizing what we "chronic pain" peeps deal with. I'm in the same boat my friend, my legs and back have become my enemies. That and anxiety......who could have known that working for 30 years would leave us like this ! Mahalo ~"
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#20 romedove

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Posted 21 August 2012 - 11:17 PM

To be able to put into words what i feel daily is very moving. Could someone please email this to me i would love to be able to share and reread it would mean so much. Thanks.
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#21 kittypup

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Posted 22 August 2012 - 06:58 AM

Hi Rome... nice to meet you. I sent you a pm requesting your email addy. Please do not post it here.. just reply to my pm and I'll be more than happy to send you a copy. Or you can just copy and paste and send it to yourself. Hope this helps....
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#22 BaconKing302

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Posted 17 September 2012 - 07:21 PM

VERY VERY good i wanted to tear up reading this.
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#23 DogFaceDude

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Posted 17 September 2012 - 11:13 PM

Perfect description. Thanks John!
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#24 Desiderata

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Posted 18 September 2012 - 04:19 AM

Thank you for giving this a bump, Dog. Can we pin this on the forum?
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#25 Desiderata

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Posted 01 March 2013 - 06:27 PM

:bump: Keeping the thoughts alive.
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