Zanna - Chronic pain

[Guest guest]

Zanna

I too live with chronic pain (I have osteonecrosis pretty much in

most of my body). This letter came through on one of my osteonecrosis

lists and I thought it was very pertinent to your comments about how

people react to you.

Shez

============

" A Letter to the Normals from a Person With Severe 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 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

simila

r 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.

[Guest guest]

OMG---this is such a wonderful way to explain it. I'm forwarding this to my friends and family so they can maybe understand-or at least start to understand what I go through!!!! THANK YOU!Sherene Silverberg wrote: ZannaI too live with chronic pain (I have osteonecrosis pretty much in most of my body). This letter came through on one of my osteonecrosis lists and I thought it was very pertinent to your comments about how people react to you.Shez============"A Letter

to the Normals from a Person With Severe Chronic Pain"Having chronic pain means many things change, and a lot of them areinvisible. Unlike having cancer or being hurt in an accident, most people donotunderstand even a little about chronic pain and its effects, and of those thatthink they know, many are actually misinformed.In the spirit of informing those who wish to understand: These are thethings 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 ifyou visit, sometimes I probably don't seem like much fun to be with, but I'mstill me, stuck inside this body. I still worry about school, my family, myfriends, 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'vegot the flu, you probably feel miserable with it, but I've been sick foryears. I can't be miserable all the time. In fact, I work hard at not beingmiserable. 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,orthat 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 amsounding 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'tnecessarily mean that I can stand up for twenty minutes, or an hour. Justbecause Imanaged to stand up for thirty minutes yesterday doesn't mean that I can dothe same today. With a lot of diseases you're either paralyzed, or you canmove. With

this one, it gets more confusing everyday. It can be like a yo-yo. Inever know from day to day, how I am going to feel when I wake up. In mostcases, I never know from minute to minute. That is one of the hardest and mostfrustrating components of chronic pain.Please repeat the above paragraph substituting, "sitting", "walking","thinking", "concentrating", "being sociable" and so on, it applies toeverything.That's what chronic pain does to you.Please understand that chronic pain is variable. It's quite possible (formany, it's common) that one day I am able to walk to the park and back, whilethe next day I'll have trouble getting to the next room. Please don't attackme when I'm ill by saying, "But you did it before!" or "Oh, come on, I knowyou can do this!" If you want me to do something, then ask if I can. In asimilar vein, I may need to cancel a previous commitment at the

last minute. Ifthis happens, please do not take it personally. If you are able, please try toalways remember how very lucky you are, to be physically able to do all ofthe things that you can do.Please understand that "getting out and doing things" does not make me feelbetter, and can often make me seriously worse. You don't know what I gothrough or how I suffer in my own private time. Telling me that I need toexercise, or do some things to "get my mind off of it", may frustrate me totears,and is not correct. If I was capable of doing some things any or all of thetime, don't you know that I would? I am working with my doctors and I am doingwhat I am supposed to do. Another statement that hurts is, "You just need topush yourself more, try harder". Obviously, chronic pain can deal with thewhole body, or be localized to specific areas. Sometimes participating in asingle

activity for a short or a long period of time can cause more damage andphysical 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 bodylanguage. Also, chronic pain may cause secondary depression (wouldn't you getdepressed and down if you were hurting constantly for months or years?), but itisnot 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 rightnow, it can't be put off or forgotten just because I'm somewhere, or I'm rightin the middle of doing something. Chronic pain does not forgive, nor does itwait for anyone.If you want to suggest a cure to me, please don't. It's not because I don'tappreciate the thought, and it's not because I don't want to get well. Lordknows 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 caninvolve side effects or allergic reactions, as is the case with herbalremedies. Italso 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 ofchronic pain, then we'd know about it. There is worldwide networking (both onandoff the Internet) between people with chronic pain. If something worked, wewould 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 yousaid 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 amatter of fact, I try very hard to be normal. I hope you will try tounderstand. I have been, and am still, going

through a lot. Chronic pain is hardforyou to understand unless you have had it. It wreaks havoc on the body andthe mind. It is exhausting and exasperating. Almost all the time, I know that Iam doing my best to cope with this, and live my life to the best of myability. I ask you to bear with me, and accept me as I am. I know that youcannotliterally understand my situation unless you have been in my shoes, but asmuch 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 visitme when I am too sick to go out. Sometimes I need you help me with theshopping, the cooking or the cleaning. I may need you to take me to the doctor,orto the store. You are my link to the "normalcy" of life. You can help me tokeep in touch with the parts of life that I miss and fully intend to undertakeagain, just as

soon as I am able.I know that I asked a lot from you, and I do thank you for listening. Itreally does mean a lot.

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

> OMG---this is such a wonderful way to explain it. I'm forwarding

> this to my friends and family so they can maybe understand-or at

> least start to understand what I go through!!!! THANK YOU!

> ===========

you are very welcome. When I read it I felt the same way. I look the

picture of health, except for the crutches. People don't understand

why I can't sit for any length of time or if I do a lot on one day I

suffer for it the next.

Shez

[Guest guest]

> Zanna

>

> I too live with chronic pain (I have osteonecrosis pretty much in

> most of my body). This letter came through on one of my osteonecrosis

> lists and I thought it was very pertinent to your comments about how

> people react to you.

>

> Shez

> ============

>

> " A Letter to the Normals from a Person With Severe Chronic Pain "

--snip--

The original Open Letter can be found at:

http://notdoneliving.net/foothold/openletter/

It was written by Ricky Buchanan (then under the nom de plume Bek

Oberin). Please keep the author's name with the work. The chronic

pain adaptation has been distributed without zir permission *and*

without zir name. Please remember to include it when you pass it on.

ygg

[Guest guest]

>

> The original Open Letter can be found at:

> http://notdoneliving.net/foothold/openletter/

>

> It was written by Ricky Buchanan (then under the nom de plume Bek

> Oberin). Please keep the author's name with the work. The chronic

> pain adaptation has been distributed without zir permission *and*

> without zir name. Please remember to include it when you pass it on.

>

==========

thanks for that info.

I have seen this letter circulated on various lists at least 10 times

and generally it is credited to anon.

Shez