I would like to share this with everyone:LETTER TO PEOPLE WITHOUT CHRONIC PAIN

[Guest guest]

Just a bit about myself.

I suffer 24/7 with severe chronic pain, scleroderma, ddd,

fibromyalgia, arthritis, etc. etc.

Over the years, I have had many surgeries. Also, I have had many assorted

illnesses and hospitalizations. But I am grateful to be alive! My mantra is:

" It could be worse!! "

I remind myself that we are so lucky because we have meds to help us numb the

pain (although most of us hate taking these medications!). We need to remember

that there are those that suffer severe pain and have no access to medication!

i.e. third world countries - can you imagine? So, I am grateful for all that I

have.

I would like to share these words - written below, with everyone in this group.

I found LETTER TO PEOPLE " WITHOUT " CHRONIC PAIN - on the internet (I cannot

recall where). And I am so grateful to the person that wrote it. I have

photocopied it many times and given it to so many people that I know, doctors,

physiotherapists, family etc. I have had many types of reactions, some of the

comments which have unfortunately, utterly shocked and surprised me!

The only people who appreciate these words are those like me who

suffer from severe pain. I am working on trying to have fewer expectations of

people, so that I will have fewer disappointments - especially (and very sadly)

- family.

I am working on being aware of preserving my precious energy for the very few

in my life, who truly understand care and love me.

Here are the wonderful words written by a very special person.

LETTER TO PEOPLE " WITHOUT " 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 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 words, in the paragraph above, substituting: being able

to: ** " sit " , " walk " , " think " , " concentrate " , " be sociable " and so on ... it

applies to everything, i.e. " being able to **….. " etc. etc.. 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 doctor 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 am 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. 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,

cooking or 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.