posted
This was posted on facebook. I don't think I could have said it any better. It's so amazing to me that so many of us feel and think the same way.....
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Having chronic pain means many changes 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 doesnt mean Im 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 dont seem like much fun to be with, but Im still me stuck inside this body.
I still worry about school, my family, my friends, and most of the time - Id still like
to hear you talk about yours, too.
Please understand the difference between happy and healthy. When youve got the flu, you
probably feel miserable with it, but Ive been sick for years. I cant be miserable all the
time. In fact, I work hard at not being miserable. So, if youre talking to me and I sound
happy, it means Im happy. Thats all. It doesnt mean that Im not in a lot of pain,
or extremely tired, or that Im getting better, or any of those things. Please dont say,
oh, youre 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, youre welcome.
Please understand that being able to stand up for ten minutes doesnt necessarily mean that
I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty
minutes yesterday doesnt mean that I can do the same today. With a lot of diseases youre
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. Thats what chronic pain does to you.)
Please understand that chronic pain is variable. Its quite possible (for many, its common)
that one day I am able to walk to the park and back, while the next day Ill have trouble
getting to the next room. Please dont attack me when Im 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 dont 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, dont 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
cant always read it on my face or in my body language. Also, chronic pain may cause
secondary depression (wouldnt 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 cant be put off
or forgotten just because Im 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 dont. Its not because I dont appreciate
the thought, and its not because I dont want to get well. Lord knows that isnt true.
In all likelihood, if youve 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 wed know about it.
There is worldwide networking (both on and off the Internet) between people with chronic
pain. If something worked, we would KNOW. Its 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 is probably because I am. Its 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.
AUTHOR UNKNOWN
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~The Green One~
-------------------- ...trying to be the coffee bean, not the egg. Posts: 420 | From East Coast | Registered: Jun 2008
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posted
Awesome! This and spoon theory are the best at explaining our situation.
Posts: 526 | From NJ | Registered: May 2007
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jt345
Unregistered
posted
Well That hits it on the head. For the past 15 years,longer I think,let's 1993no 15 is close,I have been the anchor musician for the worship team at a church here in town.
In that time I have bought 4 different guitars,all easier to play,as I progressed in pain.
Oneday someone asked what do You do with all those gituars? I just smilred and said oh I play them.
Well I was asked too cotbribute more tith,to the church.Well when I said We couldn't afford it,the comment back was "You can buy all those guitars,maybe You should think about how You spend Your moey"
I was very sick that day ,and started too say something back,before my wife stepped in( she has radar.when my mouth is about too get me in trouble)
She called Me away just when I was about too give that person some lyme rage.
Try as I may I still too this day ,get a reaction in my head when I think about that conversation. Oh it's a lyme day and I have forgotten where I was going ,anyway,pain never leaves.even when the meds mask it ,it is still there. It still take it's physical toll.
That letter is so true too what chronic pain does. It takes away life,friends,and big chuncks of the person. I have left this board because I could not stand too be remined of why I was the way I am. And pain has molded me into a person I sometimes don't know.
That letter was good very true too life. My eyes are all messed up today so,I will try again in a day or too.
I wish You all peace and happiness on this easter weekend.
Be as well as You can be today appleseed
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
That is so true, wow, I wonder who the author is. Obviously someone who understands us all here! Now if everyone would just read that.
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
I've come to realize after years of trying that there's just no way to explain chronic pain to anyone who isn't experiencing it. You're either minimized and / or not believed.
It sounds mean and it's not my intention, but someone once said to me that pain will always have the last word in everyone's life. Unless you're one of those fortunate <5% of the people on the planet who live pain free all their lives and die in their sleep, the other 95% fall ill, and deal with ongoing pain when they leave this world. If not Lyme, then they will experience it some other way.
I've pretty much stopped explaining my pain to others now. I simply state the fact that I have Lyme and can't do much of what others do. If they can't handle it, I just back off and calmly stand my ground. My "Yes" means Yes and my "No" means No.
Does this work all the time? Heck No! But I'm getting better with practice.
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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