This is a copy of a Note that Jessika Kochel had posted in reference to her Chronic Pain (CRPS / RSD). I met Jessika and her husband while playing Mafia Wars actually, and during a conversation, I learned she too had CRPS / RSD. Jessika was an advocate for CRPS / RSD, and that is what is so impressive about her, despite being in the horrible pain she has, she wanted to explain what this disease really is.
I've asked her husband if I could repost this (as I too have CRPS). My "journey" with CRPS began when I was injured on an ambulance call 3 1/2 years ago. I think that her words speak volumes to what one actually feels with this crappy condition and the larger part of the text, that she found online explains the condition so well. I would ask that my friends read this note, it will help so much in understanding what chronic pain is, and how it affects those that have it as well. Thank you for "listening" and God Bless!
A LETTER TO PEOPLE WITHOUT CHRONIC PAIN (I hope this helps you understand a litlle more)
by Jessika Meyer Kochel on Friday, June 24, 2011 at 9:12am
This is not directed at anyone in particular, but to all of my family and friends, and to those who don't know much about what I have gone through.
In 2004 I had an 85 pound cabinet dropped on my left foot and it crushed it completely. I then ended up with Chronic Regional Pain Syndrome (CRPS) (AKA RSD). Since July of 2004 I have been in pain EVERY day of my life... This is something I found online and felt I needed to share it with people.Thanks in advance for reading it.:o) Jessika
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 who 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, 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 every day. 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 social" 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 something 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 that 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 I 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 a worldwide network (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 of 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 your 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 that I asked a lot from you and I do thank you for listening, it really does mean a lot.
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