A 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 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 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 have asked a lot from you, and I do thank you for listening. It really does mean a lot.
AUTHOR UNKNOWN
**********************************
Saturday, December 24, 2011
Monday, December 19, 2011
THE SCARS OF LIFE
THE SCARS OF LIFE
Some years ago, on a hot summer day in south Florida ,
a little boy decided to go for a swim in the old
swimming hole behind his house. In a hurry to dive
into the cool water, he ran out the back door, leaving
behind shoes, socks, and shirt as he went.
He flew into the water, not realizing that as he swam
toward the middle of the lake, an alligator was
swimming toward the shore.
His father working in the yard saw the two as they got
closer and closer together. In utter fear, he ran
toward the water, yelling to his son as loudly as he
could.
Hearing his voice, the little boy became alarmed and
made a U-turn to swim to his father. It was too late.
Just as he reached his father, the alligator reached
him. From the dock, the father grabbed his little boy
by the arms just as the alligator snatched his legs.
That began an incredible tug-of-war between the two.
The alligator was much stronger than the father, but
the father was much too passionate to let go. A farmer
happened to drive by, heard his screams, raced from
his truck, took aim and shot the alligator.
Remarkably, after weeks and weeks in the hospital, the
little boy survived. His legs were extremely scarred
by the vicious attack of the animal. And, on his arms,
were deep scratches where his father's fingernails dug
into his flesh in his effort to hang on to the son he
loved.
The newspaper reporter who interviewed the boy after
the trauma, asked if he would show him his scars. The
boy lifted his pant legs. And then, with obvious
pride, he said to the reporter, "But look at my arms.
I have great scars on my arms, too. I have them
because my Dad wouldn't let go."
You and I can identify with that little boy. We have
scars, too. No, not from an alligator, but the scars
of a painful past. Some of those scars are unsightly
and have caused us deep regret. But, some wounds, my
friend, are because God has refused to let go. In the
midst of your struggle, He's been there holding on to
you.
The Scripture teaches that God loves you. You are a
child of God. He wants to protect you and provide for
you in every way But sometimes we foolishly wade into
dangerous situations, not knowing what lies ahead. The
swimming hole of life is filled with peril - and we
forget that the enemy is waiting to attack. That's
when the tug-of-war begins - and if you have the scars
of His love on your arms, be very, very grateful. He
did not and will not ever let you go.
Please pass this on to those you love. God has blessed
you, so that you can be a blessing to others. You just
never know where a person is in his/her life and what
they are going through.
Never judge another persons scars, because you don't
know how they got them. Also, it is so important that
we are not selfish, to receive the blessings of these
messages, without forwarding them to someone else.
Right now, someone needs to know that God loves them,
and you love them, too- enough to not let them go.
Some years ago, on a hot summer day in south Florida ,
a little boy decided to go for a swim in the old
swimming hole behind his house. In a hurry to dive
into the cool water, he ran out the back door, leaving
behind shoes, socks, and shirt as he went.
He flew into the water, not realizing that as he swam
toward the middle of the lake, an alligator was
swimming toward the shore.
His father working in the yard saw the two as they got
closer and closer together. In utter fear, he ran
toward the water, yelling to his son as loudly as he
could.
Hearing his voice, the little boy became alarmed and
made a U-turn to swim to his father. It was too late.
Just as he reached his father, the alligator reached
him. From the dock, the father grabbed his little boy
by the arms just as the alligator snatched his legs.
That began an incredible tug-of-war between the two.
The alligator was much stronger than the father, but
the father was much too passionate to let go. A farmer
happened to drive by, heard his screams, raced from
his truck, took aim and shot the alligator.
Remarkably, after weeks and weeks in the hospital, the
little boy survived. His legs were extremely scarred
by the vicious attack of the animal. And, on his arms,
were deep scratches where his father's fingernails dug
into his flesh in his effort to hang on to the son he
loved.
The newspaper reporter who interviewed the boy after
the trauma, asked if he would show him his scars. The
boy lifted his pant legs. And then, with obvious
pride, he said to the reporter, "But look at my arms.
I have great scars on my arms, too. I have them
because my Dad wouldn't let go."
You and I can identify with that little boy. We have
scars, too. No, not from an alligator, but the scars
of a painful past. Some of those scars are unsightly
and have caused us deep regret. But, some wounds, my
friend, are because God has refused to let go. In the
midst of your struggle, He's been there holding on to
you.
The Scripture teaches that God loves you. You are a
child of God. He wants to protect you and provide for
you in every way But sometimes we foolishly wade into
dangerous situations, not knowing what lies ahead. The
swimming hole of life is filled with peril - and we
forget that the enemy is waiting to attack. That's
when the tug-of-war begins - and if you have the scars
of His love on your arms, be very, very grateful. He
did not and will not ever let you go.
Please pass this on to those you love. God has blessed
you, so that you can be a blessing to others. You just
never know where a person is in his/her life and what
they are going through.
Never judge another persons scars, because you don't
know how they got them. Also, it is so important that
we are not selfish, to receive the blessings of these
messages, without forwarding them to someone else.
Right now, someone needs to know that God loves them,
and you love them, too- enough to not let them go.
10 Things I’ve Learned From Living With Chronic Illness
10 Things I’ve Learned From Living With Chronic Illness
1. Getting all of the rest that I need does not make me lazy. Even when I’m not moving, my body is expending a huge amount of energy on powering its overactive immune system, and on defending itself from the subsequent pain and inflammation. So while many times it might look like I’m not doing much, I’m still probably doing more than most others.
2. No matter how much it hurts, I still have to find a way to move. (Of course, I’m not advocating for movement that results in injury/harm.) During one of my first major bouts, I thought that the best thing to do was to move as little as possible. This really didn’t lower the pain, but it did eventually result in atrophied muscles, months of daily physical therapy, and having to learn how to walk again.
3. If I’m going to be in pain, I might as well be doing something that I enjoy. I may not be able to do certain things like I once used to be able to, but chances are I can still do more than what I thought possible. Learning this lesson, firsthand, is priceless for my mind, body, and soul.
4. And for those moments when it’s just not possible to do something, cancelling at the last minute is perfectly acceptable. I’ll be honest, and I’ll tell you the exact reasons why I’m not able to participate. Please don’t take it personally…I’m just as disappointed, if not more, than you are.
5. If you are a doctor or healthcare professional, you must earn my respect. I, the patient, will work just as hard to earn your respect. I will ask lots of questions, and I will listen to what you have to say. When it comes to treatment options, though, I will be the final decision maker. (After all, no one knows my body better than I do.)
6. Achieving acceptance is hard. (I used to think that doing so meant “giving up.”) Just when it feels like I’ve accepted everything there is about my illness, something pops up, and I want to deny everything, all over again. With chronic illness, I don’t think there is such a thing as “complete” acceptance…there’s just a continuous journey, back and forth, between denial, acceptance, and so many other emotions.
7. No matter how bad I’m feeling, no matter how much pain I’m in, it’s *not* okay to take out my anger and frustrations on other people, especially those who are close to me. Yes, it’s fine–sometimes even healthy–to feel angry and frustrated…but I have to know how to release this energy in a way that doesn’t harm myself, or those around me.
8. Never, ever, compare my pain and illness to those of others. My illness is mine, and mine alone. I’m completely entitled to feel everything–emotions, symptoms, and otherwise–that results from living with my illness. (I’m entitled to feel everything, that is, except shame.)
9. While a positive attitude isn’t going to “cure” me of my illness, it’s certainly going to make it easier to overcome the challenges that I encounter on a daily basis. Yes, I do have occasional periods of doom and gloom…but I make a point to pass through them as quickly as possible. The mind is a powerful tool, and I must use it to my advantage.
10. Just when it feels like my world is going to fall apart, the best thing for me to do is to sit down, and take a deep breath. And another one. And another one…until I realize that everything is indeed okay.
(http://www.rheumatoidarthritisguy.com/2011/11/10-things-ive-learned-from-living-with-chronic-illness/)
1. Getting all of the rest that I need does not make me lazy. Even when I’m not moving, my body is expending a huge amount of energy on powering its overactive immune system, and on defending itself from the subsequent pain and inflammation. So while many times it might look like I’m not doing much, I’m still probably doing more than most others.
2. No matter how much it hurts, I still have to find a way to move. (Of course, I’m not advocating for movement that results in injury/harm.) During one of my first major bouts, I thought that the best thing to do was to move as little as possible. This really didn’t lower the pain, but it did eventually result in atrophied muscles, months of daily physical therapy, and having to learn how to walk again.
3. If I’m going to be in pain, I might as well be doing something that I enjoy. I may not be able to do certain things like I once used to be able to, but chances are I can still do more than what I thought possible. Learning this lesson, firsthand, is priceless for my mind, body, and soul.
4. And for those moments when it’s just not possible to do something, cancelling at the last minute is perfectly acceptable. I’ll be honest, and I’ll tell you the exact reasons why I’m not able to participate. Please don’t take it personally…I’m just as disappointed, if not more, than you are.
5. If you are a doctor or healthcare professional, you must earn my respect. I, the patient, will work just as hard to earn your respect. I will ask lots of questions, and I will listen to what you have to say. When it comes to treatment options, though, I will be the final decision maker. (After all, no one knows my body better than I do.)
6. Achieving acceptance is hard. (I used to think that doing so meant “giving up.”) Just when it feels like I’ve accepted everything there is about my illness, something pops up, and I want to deny everything, all over again. With chronic illness, I don’t think there is such a thing as “complete” acceptance…there’s just a continuous journey, back and forth, between denial, acceptance, and so many other emotions.
7. No matter how bad I’m feeling, no matter how much pain I’m in, it’s *not* okay to take out my anger and frustrations on other people, especially those who are close to me. Yes, it’s fine–sometimes even healthy–to feel angry and frustrated…but I have to know how to release this energy in a way that doesn’t harm myself, or those around me.
8. Never, ever, compare my pain and illness to those of others. My illness is mine, and mine alone. I’m completely entitled to feel everything–emotions, symptoms, and otherwise–that results from living with my illness. (I’m entitled to feel everything, that is, except shame.)
9. While a positive attitude isn’t going to “cure” me of my illness, it’s certainly going to make it easier to overcome the challenges that I encounter on a daily basis. Yes, I do have occasional periods of doom and gloom…but I make a point to pass through them as quickly as possible. The mind is a powerful tool, and I must use it to my advantage.
10. Just when it feels like my world is going to fall apart, the best thing for me to do is to sit down, and take a deep breath. And another one. And another one…until I realize that everything is indeed okay.
(http://www.rheumatoidarthritisguy.com/2011/11/10-things-ive-learned-from-living-with-chronic-illness/)
Do's and Don'ts of Chronic Pain
DO NOT assume because I look well that I feel well. Looks can be very deceiving. Many days I look great, but I feel terrible.
DO NOT tell me you know how I feel. No one knows how anyone else feels. Two people with the same disease may feel totally different. We all have varying thresholds of pain, and pain cannot be measured.
DO NOT tell me about your great-aunt GERTRUDE and her HS, and how well she managed in spite of it. I am not AUNT GRETRUDE, and I am doing my best.
DO NOT tell me, " It could be worse. Yes, it could be, but I don't need to be reminded.
DO NOT decide what I am capable of doing. HS doesn't affect the brain. Allow me to decide what activities I can participate in. There may be times I might make the wrong decision, and if I do, I'll know it soon enough.
DO NOT be upset that you cannot ease my pain. It won't do any good for both of us to be miserable.
DO NOT ask me how I feel unless you really want to know. You may hear a lot more than you are prepared to listen to.
DO NOT assume because I did a certain activity yesterday that I can do it today. HS is ever- changing.
DO NOT tell me about the latest fad 'cure'. I want to be cured more than anything, and if there is a legitimate cure out there, my doctor will let me know.
DO learn everything you can about the disease. The more you know, the better equipped you will be to know what to expect.
DO realize I am angry and frustrated with the disease, not with you.
DO let me know you are available to help me when I ask. I'll be grateful. DO offer me lots of hugs and encouragement.
DO understand why I cancel plans at the last minute. I never know from one day to the next how I will feel. HS is like that.
DO continue to invite me to all the activities. Just because I am not able to bike ride along with the gang does not mean I can't meet you for the picnic at the end of the trail. Please let me decide-
DO NOT tell me you know how I feel. No one knows how anyone else feels. Two people with the same disease may feel totally different. We all have varying thresholds of pain, and pain cannot be measured.
DO NOT tell me about your great-aunt GERTRUDE and her HS, and how well she managed in spite of it. I am not AUNT GRETRUDE, and I am doing my best.
DO NOT tell me, " It could be worse. Yes, it could be, but I don't need to be reminded.
DO NOT decide what I am capable of doing. HS doesn't affect the brain. Allow me to decide what activities I can participate in. There may be times I might make the wrong decision, and if I do, I'll know it soon enough.
DO NOT be upset that you cannot ease my pain. It won't do any good for both of us to be miserable.
DO NOT ask me how I feel unless you really want to know. You may hear a lot more than you are prepared to listen to.
DO NOT assume because I did a certain activity yesterday that I can do it today. HS is ever- changing.
DO NOT tell me about the latest fad 'cure'. I want to be cured more than anything, and if there is a legitimate cure out there, my doctor will let me know.
DO learn everything you can about the disease. The more you know, the better equipped you will be to know what to expect.
DO realize I am angry and frustrated with the disease, not with you.
DO let me know you are available to help me when I ask. I'll be grateful. DO offer me lots of hugs and encouragement.
DO understand why I cancel plans at the last minute. I never know from one day to the next how I will feel. HS is like that.
DO continue to invite me to all the activities. Just because I am not able to bike ride along with the gang does not mean I can't meet you for the picnic at the end of the trail. Please let me decide-
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