Some just don't know what we go though

[debhun]

was sitting here reading posts and it came to me that people really don't know what some of us really go thought each and every day of pain. They think OH you have CP you just excise for that right? You know what is going thought our mine at that time. Oh yes when I can get myself out of bed. Then my feet hit the floor and I can't put one in front of the other. Get to my meds so I can just do the little things around the house. Washing dishes is like for ever you do a few then sit down or you sit on the stool and do them like you do when you are cooking. Then it is the wash you try and not bend over to much as you put them in. After you dry them you try and fold them the arms hurt so bad can't pick them up to fold. Never make the bed why just going back in it in a few hour to rest.Than after the rest try and vag the rugs you look at the dog and say can't you just pull it for me? Yeah excrise works all the time when you have the strength to do it.

People just don't have the right info on CP. And I have read on the net about CP and some make it sound that it is not bad at all. I wish we all could get the message out to the people that our pain is just as bad as if some one had broke a arm or leg but the pain is there 24/7 352 days a year. They make me feel as if I am putting on a act. If they could just live in my shoes for a week they would know excrise is not the answer to our pain. Yes some excrise is good and only a little at a time.

Sorry I went off but you do tired of hearing this all the time.

Deb

[Bobbi]

((( Hugs, Deb ))).

Funny, isn't it, that our dogs don't cook and clean for us. What are they thinking?


The cool thing about my dog is, she does try her best; she lets me use the top of her head to balance myself and for stability when I'm trying to stand and walk. She also stays beside me; I think she knows that if I fall, she's gonna break that fall.

The best part about our dogs? We can tell them anything and they don't repeat it :D.

[curiousforever]

Yep.

My dad had bone spurs removed from his shoulder and a rotator cuff repaired. He used to be one of the ones against the pain pills. It took probably a month for him to be on pain pills for him to 'get it'. I think my mom seeing that as well - she doesn't say anything negative anymore.

I hate it that dad had to go thru it - but that's like the only way. :(

[sandybeaches]

Hi Deb,
I lurk more than I post, but I thought since you were new, you might like to have this letter on hand for people around you who don't understand about CP. There is also another one that I will post below this post that is helpful. People who don't have CP will [B]never[B] understand until they walk a mile in our shoes or spend a week in our pain.

Pam




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 it’s effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those of you 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 does not mean that 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 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.

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 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 your looking 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 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 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 is 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 it happens, please do not take it personally. If you are able, please try to remember how very lucky you are--to be physically able to do all the things 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 it may frustrate me to tears, and is not correct and if I was capable of doing some things any or all the time, don’t you think I would? I am working with my doctor and 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 period of time can cause more damage and physical pain that you can 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 take these pills now, that probably means that I have to do it right now- it can’t be put off or forgotten just because I’m somewhere, or I’m even in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure for 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 may have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of it self can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we would 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 defiantly not for lack of trying. If, after reading this, you still feel the need to 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. 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 accept me as I am. I know that you can not literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try and be understanding.

In many ways I depend on you – people who are not sick. I need you to visit me when I’m too sick to go out… Sometimes I need you to help 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 I asked a lot of you, and I do that you for listening. It really does mean a lot to me.

AUTHOR UNKNOWN

[sandybeaches]

Deb,
Here is the second letter... (by the way I was Swtpea2 --Pam from Mississippi--on the old boards!) This story is about a lady with LUPUS but it also could be used as an example of Chronic Pain... I have to split it in half as it is too long for one post...be patient with me!!!

The Spoon Theory
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.


2nd half coming!!!!

[sandybeaches]

THE SPOON THEORY 2ND HALF



When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

© 2003 by Christine Miserandino Butyoudontlooksick.com

[BrokenBladder]

Understanding CP is something that most people will never do until something happens to them, which by the way, I would never wish on anyone.
It's just one of those things. People tend to understand what they can relate to. CP, in most cases, can't be related to.
I understand your frustration as everyone on this CP forum does, so please feel free to vent anytime.:)

[Mark N]

Not only will people not understand, there is no reason for them to think about what we go through until they face it themselves. There are a few rare people that are empathetic and can see the spoon story have have some understanding of what we go through. It is still difficult for me to understand how hard it is to get up and get ready each day because I remember the time when I could just get up and go.

Noone ever has to think about a BM ahead of time; not only think about it but plan on it a day ahead of time, make sure they are eating and drinking the right things, and taking their meds to ensure that they will survive the next BM. They have no reason to think of all the other things we have to consider just to make it through another day. Our CP changes our lives so much that others have no point of comparison to understand our situation.

[Cervie Barb]

It's so true, Deb, and depressing at times. Thank God for dogs, fur sure! No judgement, just caring.

I can't believe how nasty people can get about one being on disability (SSD). Like you'd rather live in abject poverty than work even part time, if you could. It's a cold, cruel world sometimes. Thankfully we can find some warmth amoung us!

[Pamster]

I have hesitated adding a CP page to my website because of the discrimination that exists agianst us CP'ers. I have started a page but I just don't have the courage to put it up let alone finish it. I am so afraid of what people might think you know? So I have just let it sit on my desktop unfinished...Those letters you posted Pam were very good, thanks for sharing them. :)

I wish the country would stop thinking exercise is the key to solving CP because it's not. Not everyone can exercise even if they want to. :( I don't want people getting funny ideas about what CP really is and until it touches their lives they will not have a clue as to what our lives are truly like. How just getting out of bed can be a torturous endevour. :(

[BrokenBladder]

Oh yes Barb I try and keep the fact that I'm on SSD from anyone except immediate family. My neighbor, who is a friend, happened to be at my house one day when I was on the phone with Medicare so naturally when I got off the phone she ask a few questions and I decided to be honest. Silly me. She told her husband and he actually had the nerve to tell me I was living off of the government. I knew right then that would be the last person I ever told anything to.
Thank God for BT and all the people her who actually understand CP.

[Kathi49]

Pam,

Thanks for posting "The Letter"! I have been looking for that everywhere. It is the best I have ever seen! I actually printed that off for my mom a long time ago and had her read it. In the end, she was crying. Then, of course, I felt bad because I didn't want her to cry...I just wanted her to understand. I am printing that off again.

Pamster,

Get the site up and running! :) To heck with the naysayers!!! And I am soooooooooo glad you mentioned exercising!!! I don't have a problem with "keep moving". But...PLEASE...STOP with the exercise will fix everything. And in some cases, it can make one feel much worse or even worsen the condition! And don't get me started on PT. All I will say about that is...there was only ONE time where it benefitted me and that was hip pain. I have more than one horror story about PT but I will stop right here or I will offend someone.

Lisa,

Yep, speaking of SSD just gets people riled up! They just don't get it!

[Mark N]

Pam, I lived to exercise before my CP got so bad I could and even then I have tried to start up a time or two. I love the feeling I get from exercise and miss it more than I can say. I didn't feel good walking out of the weight room unless I could baely move. Now I pursue the mildest exercise and I pay for it days later. Some times I want to exercise like old and forget the ramifications just to feel the rush I used to get from it. If only exercise was the answer anymore.

[Pamster]

Ok how's this for a basic page (http://www.cyber-soup.com/truthchronicpain.shtml):


In 1998 I was in a car accident and that is when I think s nerve got pinched in my neck. It's either C4 or C5, I can't remember which one, but an MRI revealed I had a partially herniated disk and I began pain management in the summer of 2002. Chronic pain is debilitaing and can completely interfere with one's ability to get everyday chores and tasks done. I was at the point where I couldn't even raise my arms above shoulder level without sharp shooting pains. It was horrible, I was having trouble putting my wheelchair into the trunk of my car and getting it out was just as painful. I was lucky enough to find a really good pain management doctor who, after seeing the results of the MRI, began to treat my pain.

The medication I take doesn't give me a buzz, but it does make the pain tolerable. I still hurt of course, but it's much more managable. Some people prefer to get periodic injections of cortisone or other anti-inflammatory drugs or anesthesia for pain relief, but I just can't go that route because I can't risk something going into my spine in any way shape or form. I suffer all the time with the pain and sometimes my pinky and ring finger go numb, this is a nerve related pain and can be very frustrating to cope with day after day. I am grateful that the medical profession has evolved enough to offer people who suffer with Chronic Pain like me a chance at getting relief, through something called Pain Management.

There are so many conditions people can develop Chronic Pain from I won't even begin to name them all, but needless to say that I wanted to update CyberSoup with a page about pain, it's been long overdue and I hope that I can add more links here as time goes on. For now the one place I go to for emotional support is called Brain Talk and they have a chronic pain forum with a lot of wonderful supportive people who all suffer varying degrees of pain. We talk about all kinds of things and share experiences with medications and talk about side effects among other things. If you're suffering in silence, think about it, the quality of your life is suffering and you can get relief if you can talk to your doctor about it and see if you should be referred to a Pain Management Specialist.

<UL>Six myths about Chronic Pain:</UL>

<LI>1. Exercising helps everyone</LI>
<LI>2. Every person who takes pain pills is selling them on the street</LI>
<LI>3. Every person who takes pain meds gets a buzz</LI>
<LI>4. Physical Therapy is for everyone with Chronic Pain</LI>
<LI>5. Pain is Pain, there's only one kind of pain</LI>
<LI>6. People who go to Pain Mangement Doctor's are weak</LI>
<LI>7. People who don't LOOK disabled, can't be disabled </LI>
</UL><P><BR>

1. Exercising can help if you can do it without hurting yourself worse, many of us living with Chronic Pain are unable to exercise comfortably. So if you tell one of us that we should be exercising you're singing to the choir, we'd love to exercise if only we could do so without creating more problems many of us would. Some people can exercise, but for many of us just getting around taking care of life's little problems and demands is all the exercise any of us need.<P>

2. Now I only added this one because it's talked about a lot and it's a fact of life that some people lie about being in pain and are in pain management to get pills to sell on the street, that's a sad reality of the times we live in. However a person suffering would never dream of breaking their agreement they signed with their Pain Physicians because they NEED the medicine to get through each and every day, for people in true pain this is not even a thought other then to see it in the news and be saddened that another person was caught doing it, giving the rest of us CP'ers (people in Chronic Pain often call ourselves CP'ers) a bad image.<P>

3. As I said above, I do not get a buzz, the medication goes to the pain and tackles what hurts so I can get through my day. I am not alone in this, most of us do not get buzzed off our meds and because we take meds we do NOT drink-EVER. Drugs and Alcohol do NOT mix PERIOD.<P>

4. While Physical Therapy can help loosen tightened muscles, which can give nerves a rest, it's only a temporary fix. One thing I learned from my Therapist were some good exercises to do to work on loosening my shoulders where most of my pain is located. They can help you pinpoint the locations of your pain just as the Pain Management Doctors can, and the Therapist can use deep tissue massage to help give temporary relief to cramped muscles. While Physical Therapy is nice to have insurance varies on how long of a run it will cover and it's a personal decision in my opinion, as to whether you and your Pain Management Specialist think it could offer you some needed relief.
<P>

5. There's more then one kind of pain. There is burning pain, and numbing stinging pain, ringing stinging pain, stabbing sharp pain, dull achey pain, cramping and strained muscle pain feels like having the fibers ripped of the muscles, there are lots of types of pain. I probably have overlooked a few, but I wanted to name the ones I could think of at the moment that I have endured over the years. So there is not just one kind of pain, to that I can attest to.<P>

6. This last myth is one I hope that none of you reading this page believe, it takes a great deal of courage to admit that you're suffering horrible pain. You know it's there when you go to bed, and it's there when you wake up in the middle of the night and it's there when you wake up in the morning. You feel weaker when you're in pain like that, so if you're suffering in silence, please, don't look at yourself as being weak for wanting relief from it. It's out there waiting for you if only you can bring yourself to talk to your Primary Care Physician and ask what they think about referring you to a Pain Specialist. It doesn't make you weak to get injections or to take medications for managing pain levels. It takes courage in my opinion to stand up for yourself and ask your doctor for help.<P><BR>

7. Just because someone doesn't appear to have a disability doesn't mean that they aren't disabled in some unseen way. People can be in excruciating pain and you can't see a thing wrong with them, so don't judge by appearances alone. If a person is walking like they are in pain, odds are they are. People shouldn't be judged because of the pain they feel, it's bad enough they suffer that pain, but that they have to be told by total strangers, "What? You're disabled? But you don't look sick..." or whatever is just wrong. I would hope that anyone reading this page realizes that people can be disabled and not look it, because of how cute my son is, he doesn't look disbled but when you see him you can tell something isn't quite right. There might be little cues to tell you someone is in severe pain, like shuffling their feet as they walk or grimacing when getting up from a seated position. But I'm not here to lecture anyone. I just want to raise awareness about something close to my heart.



Here is the link to <A href="http://brain.hastypastry.net/forums/forumdisplay.php?f=118">Brain Talk's Chronic Pain Forum</a>]

[jena1225]

Hi Deb,
I lurk more than I post, but I thought since you were new, you might like to have this letter on hand for people around you who don't understand about CP. There is also another one that I will post below this post that is helpful. People who don't have CP will [B]never[B] understand until they walk a mile in our shoes or spend a week in our pain.

Pam




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 it’s effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those of you 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 does not mean that 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 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.

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 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 your looking 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 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 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 is 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 it happens, please do not take it personally. If you are able, please try to remember how very lucky you are--to be physically able to do all the things 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 it may frustrate me to tears, and is not correct and if I was capable of doing some things any or all the time, don’t you think I would? I am working with my doctor and 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 period of time can cause more damage and physical pain that you can 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 take these pills now, that probably means that I have to do it right now- it can’t be put off or forgotten just because I’m somewhere, or I’m even in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure for 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 may have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of it self can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we would 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 defiantly not for lack of trying. If, after reading this, you still feel the need to 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. 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 accept me as I am. I know that you can not literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try and be understanding.

In many ways I depend on you – people who are not sick. I need you to visit me when I’m too sick to go out… Sometimes I need you to help 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 I asked a lot of you, and I do that you for listening. It really does mean a lot to me.

AUTHOR UNKNOWN

Thank you Sandy! We have a similair letter for us with MS, and I actually sent it to my mom and she forwarded it to my sisters and brothers! They are the best support system EVER, but even the most supportive people need to be educated about things when it is affecting someone they love. Sinply because I know that WANT to know these things.

I don't think I need to send this whole letter, but I will send most of it, as I think they now need some help understanding CP :D

[jena1225]

Sandy, that "Spoon Theory" is ANOTHER letter I have for MS! I sent that one as well :D

[jena1225]

Even though she is very supportive, Mom just says the most ignorant things, KNOWING my problems! The other day she says "I just don't think you get enough exercise". And when I tell anyone the truth about how I am felling when they ask, I get "Did you take an Ibuprofen?" LMAO That one cracks me up! Or, they can't understand if I am on meds, going to PT, etc... why am I STILL feeling bad??? So then it makes me wonder.

Besides knowing I am take Baclofen and Lyrica, I don't think anyone in my family knows I am on Oxycotin and Percocet for B/T. I think the most DH knows is that I take the Percocet "as needed" And even though he knows I am in pain daily, I still hesitate to tell him I am on the Oxycotin, only because I have heard him say something like "yeah, that really addictive stuff!"

I know he would be supportive if I told him, but I still do not want even the slightest lecture, as there is always that chance. :rolleyes:

[Diandra]

Hi Deb and everyone else,
Yes, it is monumentally frustrating that people without CP just don't get it and I believe it was Mark who said, they won't get it unless they have to face CP themselves.

I was at a doctors office recently and the administrative person behind the counter loudly says to me(and everyone in the waiting room), "This can't be right, this says you have Medicare, you are too young for Medicare...why does it say you have Medicare?" or I have also gotten,"You have Medicare for disability? Why? You don't look disabled."

Yes, Deb, people can be clueless but, thankfully we have the support we need here and there have been great letters and info in this great thread you started to share with those we love and may want to "get it" for our sakes.

Glad you started this...we all need to vent from time to time about the insensitivity of those who don't understand CP.

Take care,
Diandra

[Pamster]

Thank you for posting this Diandra, I forgot to add that people who don't look disabled aren't necessarily able bodied and to not judge on appearances...Adding to my CP page now. :)

[Kathi49]

Pamster,

I like your page! But I am curious as to why you can't receive injections. Just me, but maybe on that page you should clarify as to why because while I was reading it, I was wondering about that. :) Just a thought...don't take what I say to heart. I was just thinking it might be something that someone might ask. :)

[Pamster]

I just don't want anything in my neck, I refused an epidural during labor and birthing Jackie, see I broke my back and I don't want to risk becoming paralyzed...My Pain Doc told me he couldn't gurantee that it owuldn't happen because there is a risk involved so I don't want to have injections, you're irght I just need to clarify that a bit in the page info :)

ETA: Done thank you for mentioning it to me Kathi. I feel better now. This is just something that had been in my mind for awhile and today I decided to go ahead and make the page and go live with it. :D

[Kathi49]

Okay, Pamster, got ya!

I hope you get it up and running soon! :)

[Pamster]

Got it done and set up about an hour ago:

http://www.cyber-soup.com/truthchronicpain.shtml

But I edited it to add a bit about me refusing an epidural and all. I put the link to it in my siggy too. ;)

[Mark N]

Good page Pamster!

[ErinENj]

I meant to post here yesterday, but I had a bunch of work to do on my portfolio for a class today.

Deb: Great topic!! I wasn't surprised to see that there were a lot of responses when I came back tonight!

No one knows. The only people who have a shred of an idea are those who have CP. There are some people who have a hint but don't know the whole kit-n'-caboodle (I've never actually used that word before. Hope I spelled it right!) and those are the people who knew us before this started and know us after, who have seen the changes we've undergone due to CP. They've seen how CP effects someone, maybe not completely, but they get a hint or a glimpse into parts of this life. My friends knew me before this all started. I met them all my freshman and sophmore years (I'm actually still friends with the first person I made friends with in my first college class) at school, and I was a very different person. I was going through what was at that time, some of the worst stuff I had dealt with, especially later freshman year and it was at it's worst the very beginning of my sophomore year. Some of my friends became my second family at school because I had threatened suicide one night, after breaking up with my boyfriend and I was having a really, really hard time with my parents' breakup, everything seemed to be piling on top of me. So my resident advisor, who was a friend, was required to go through my room and take out anything that may be dangerous like medications that kind of thing, and he also had to keep a close eye on me for a week or two so I spent my free time in the suite where his room was (The building was in a suite setup. There were 4 suites with 4 bedrooms, a bathroom, and a living area on the 4 corners of the building and there was an interior suite that had the RA's room, and 5 bedrooms with a much larger living area). I got to know these two guys that used to practically live in the suite, and they became my best friends, and my school brothers. They helped me get out of the funk I was in and helped make me a more outgoing and popular person. By the end of sophomore year, I was a happy person. So they saw me go from my good ole' miserable self to this outgoing popular and happy person, and then watched my health deteriorate and watched the 'me' they knew dissapear. I still have some of that personality left, like my sense of humor and strong sense of sarcasm, but a lot of it is unfortunately gone thanks to this pain.

Because both my friends and especially my family, have seen my deteriorating health and seen what it has done to me emotionally, spiritually, and physically, I think they have a shread of an idea of what this does to people. Not necessarily what it's like, but the effect it can have on a person. The only people who ever understand what this is actually like is someone who has CP. Some people say, "I understand. I get headaches or my back hurts sometimes or I have this horrible pain here and there...etc" but they don't get that temporary pain, while uncomfortable and very painful to that person, is a drop in the bucket compared to what we go through. There is no way for anyone to understand what it's like to have pain every second of every day. There's no way to describe how horrible it is to not know what tomorrow might bring. We might wake up okay, we might wake up in some more pain, or we might wake up and find that moving is just too intense to be able to handle it. That living on the edge, living a life that is uncontrollable, is emotionally draining, let alone physically. No one could ever understand that. There's a lot of the different pieces of this nightmare that no one could or would ever understand unless they have lived this life.

The stereotypes out there are the things that worry me most. People won't understand, that's a given. But to have people believe that we're drug addicts or we're faking this pain so we can have a steady supply of meds to sell or we're just not tough enough to deal with the pain and get on with our lives. We should just get over it. Or we're just faking a disability to get the money and health care from the federal government and because of that, we're stealing money straight from their pockets. The list is endless. I'm sure you all know dozens of them. Here's one I get a lot: That all people who suffer from CP are old people at the end of their lives. CP doesn't effect young people, so if a patient in their late teens or early 20s goes to a PM doc and asks for meds, they're just a drug seeker. There's just no way someone in their 20s could have CP. I always want to say, "You know, I wish that stereotype was right! I wish it was impossible for me to have CP."

Those stereotypes are a few of the things that help keep me going at school. They're the things that give me that extra boost when I'm really hurting but have work to get done and the things that give me the drive to get down and back from school every day. They give me the passion and drive to finish school so I can prove them wrong. "People with CP just lie in bed all day doing nothing because they aren't tough enough to handle their pain. They're lazy, unproductive, and a drain on society." There are no words for how much I can't wait for someone to say that to me again and to have the ability to take out my pocket sized diploma (yeah, they give us a copy of our diploma that's about the size of a credit card so we can carry it with us everywhere) and shove it in their face!

But there's also another piece I'm looking forward to after I graduate. I look forward to being able to change minds. I'm hoping that the reason I was giving the gift of writing and given this curse too was that I'm supposed to help change the public's perception of what this is like and the truth of it. I really think that if I change a few peoples' minds by my writing and reporting or make a few people reconsider all those things they've always thought people with CP do or are like or go through during my entire career, I think I will have lived a life I can be proud of. I think I'd be happy to know that I've helped make the truth the accepted belief about CP. I'd be content with that. I don't mean to toot my own horn, but I really think I could do it given the right stage. I think that I might be able to change a few opinions, even just by being a successful journalist who also happens to suffer from CP. Of course, I want my own Watergate as we in the buisness say (that sounds so stupid, but seems to be the only way to phrase it), meaning that I want that earth-shattering, mind blowing story that exposes some major scandal that leads to momentous action. It'd be pretty convenient if it also had something to do with CP. Kill two birds with one stone! :D There's no more amazing feeling of accomplishment when you write something and it actually makes a difference and changes things for the better. I got a taste of that when I wrote an editorial in the last issue of my school's newspaper last year speaking out against the university for the lack of the legally required number of handicap parking in one of the student lots. There was only 1 spot in the large parking lot and it was as far away from the building I spend most of my time in as you could get. There are handicap spots right in front of the building (3 in a lot that has maybe 20 spots in it) but there are faculty and staff members, who could legally park in the normal spots right next to the handicap spots, who take up all three of them every day. Well, after the article ran (it ended up taking up the entire top half of the page in the newspaper. It's about the size of a legal sized sheet, maybe a little longer and wider, so it was a long article), the school put in two more handicap spots in the student lot. They were completely inconvenient for me since they were placed right next to the single existing spot, but my article still brought about change that I'm sure, since all three spots are full on a daily basis, has helped other handicap students get to their classes easier. And, recently, all but one of the faculty/staff members who were taking up all of those spots have started parking somewhere else, so my building is a lot more accessible to me now and I don't have to worry about parking in a regular spot in a lot where, without the handi pass, I would get a substantial parking ticket. But it was fantastic knowing that I might have made someone else's life at least a little bit easier and maybe even helped give another student a better chance of being successful despite their disability. It was the best feeling in the world! And I want to keep doing that!

People aren't going to have a clue until this condition effects them in some way, either by suffering the pain themselves or by seeing a relative or close friend go through it. But I hope that some day you're average person would have a better idea of what this is like and be given the information needed to kill some of those stereotypes. And I of course hope that I can help make those changes.

[debhun]

You go girl. I can see that you will make a different in this world in your writings. You wrote to where people could understand what you are saying and that is very good. Some writers write in a way you can't understand it.
Thank you for the post I loved reading it and all was true.

Now you go out there and just do your best to get the word out it only take one person to read it to get the ball rolling.
I wish you the best and good days

Deb

[Kathi49]

Erin,

You definitely have a gift! :)

I just wanted to chime in here about age. :) My mom was asking me the other day if I felt I handled pain better now at 50 vs. in my 20's. My first reaction was to say, oh much easier to handle now. BUT...when I thought longer on that. It is NOT necessarily true. Because I think at any age it can it and hit hard! I saw my niece suffer with GBS and she was only 25. It was terrible to watch what she was going through. And I swear we came close to losing her although most recover from it. But to be so young and have that hit her just tore me up. And I could go on and on about all they did to determine if that is what she really had....not a pretty sight!

Anyway, I think if anything, just based on my age now. It is ONLY easier because I no longer have a small child to contend with, I no longer have a career to worry with or about and of course I am retired so I can rest when I need or want to. If I had been in my 20's when this hit, it is hard to say how I would have reacted. I probably would have struggled on just like every young person here is doing because I would have HAD to. I don't think in looking back that I would have even had an option. Other than just to quit...period. But in looking back at the 20's I don't think quitting would have even been an option as I was trying to raise my daughter. Of course I was married but it took two incomes. So, when I say my hat is off to everyone younger than I am, I mean it. It has to be tough to attend college, raise small children and just keep going..period. But look at what you all have accomplished! I think it is wonderful! Yet, I also know it is an ongoing struggle. It is all very admirable to say the least. And please don't take my words as some kind of pity party. That is not how it is intended. I just don't know if I could have proceeded as well as you all are doing.

Oh, and Erin, I think once college is over with your upper back and neck might feel better once that load is off! In more ways than one. :)

[jena1225]

Kathi - I do not take that as any kind of pity party at all. But, in a lot of ways it is true. If my 2 kids were bigger and on there own, I would be able to sleep in, not rush my aching body out the dooor every morning to school, because you know that when you say "hurry up!" they hear "waaaalk in sloooooowwww moooootion":rolleyes: It sucks because I want to put my daughter in cheerleading again, but the last time we did it, I had to contend with the heat, which I cannot do, and with her crying everytime we had to go because SHE didn't like the heat either! lol But she loves cheerleading.

Chasing my 4 yeard ols son around constantly! because he thinks it is just sooooo funny to run from me and throw things at me! He seriously thinks it's funny! aarrghh. But I am sure you all know the feeling.

But, then again, they are what keeps me from laying in this bed 24/7! Except of course when I have a relapse with my MS and can't move at all, well, then I have no choice! :D lol.

Sorry, kind of rambling at this point. But you know, we ALL, young, old and in between, have sacrifices to make. Things MAY be harder for us with young children, BUT, my pain might not be as bad as yours. So, in the end, we are all in this together!

[Kathi49]

Exactly Jena!

That's what I meant when I said in looking back I don't know how I would have reacted. Because...there were many times I was laid up! Shoot, I would have had to train my daughter how to get her own meals LOL! No, seriously, I would have had to find some kinds of work arounds or something.

I can't contend with the heat either...at all! So, when August rolls around, I am in the airco! It is the humidity really. I just cannot stand it and it makes my whole body feel like it is on fire!

So, yep, we are all in this together! :)

[jena1225]

Yes Kathi - my daughter (7) now makes her own "Kids Cuisines!" lol. But she loves it :). Of course, I have no idea what I would do without my hubby and family. Seriously, I think I am really lucky, as I know there are people who have very little support system.

My family takes my kids whenever I need them to. I still have to contend with the guilt, but am getting better with that I think. I just try to only utilize their help only when I have to.