Do you know someone with chronic pain?

Do you know someone who lives with chronic pain or illness?

 I recently read a really great book called "She'll never make it through the night - an extraordinary story of faith, hope, and the power of prayer", By D Hedegard. Inside it says:

Even at times when the Holy Ghost is moving and miracles are happening, godly men are not immune from sickness. We serve a God who heals. But we also serve a God who—as Elisha experienced, as Hezekiah experienced, as Paul makes reference to—sometimes uses sickness for his glory.

This book was both heartbreaking and heartwarming and most surely an inspiration and challenge to all who read it. I heartily recommend it. But now I'm reading another very good, challenging and inspirational book called, "Wednesdays were pretty normal: A boy, cancer, and god." By M. Kelley, which I'd also recommend.

But they're not really what this post is all about. They just gave me the idea. Both authors show how their lives change and as I was just reading about how people you're close to seem to drift away after awhile, I realized that I wanted to talk to you guys about that. All of the members here in the pain forum have experienced that very same thing when they became sick or disabled. People they were close to for years either slowly or suddenly, just stopped calling or coming by, and no longer responded to messages. I experienced it as well.

Usually when we go through that, we're pretty new to the whole disabled; pain; illness thing ourselves and don't know what to expect or what's going to happen to us. No one warns us that our friends won't be our friends for long, so we have that hurt to bear on top of our pain and illness. The stories I've heard about this are heartbreaking to say the least.

As this author and others point out though, it's not necessarily the "friends" fault. Most folks simply don't know how to deal with or relate to people who are in constant pain, ill, and disabled. Especially not when that person is someone they knew as an active, healthy, go getter. And believe it or not, statistics show that most of us who are now disabled were very active people before the accident and/or disease put a stop to it.

As I'm sure you're aware, we have a private forum here for those who live with pain. It's our hideaway, where we can talk without having to be concerned about whether or not others will understand, or whether or not what we say will frighten someone or make them uncomfortable. Out here, on the main board, we may say something like, we have a doctors appointment, or a check up etc. In there though we can talk about the appointment - why we're going, how bad the pain is now, our fears, our hopes, whether the doctor is good or not, what we like and what we don't.

I've always felt torn about it being a private forum though. We need the privacy in some ways, but in other ways, we need it to be out in the open, because more then anything else, we need other people, people who still have what we call, "normal" lives, to understand us. But when we do talk about it a little out in the open, we can tell that many people are just plain uncomfortable with it. We don't blame them for that. We were the same way ourselves once. After all, what do you say to someone that's in constant pain every single day???? How do you deal with it?

So tonight I thought, well, why not try and explain to other people what we'd like them to understand? That it's OK to be uncomfortable, but don't try to hide it - say so! Tell us you don't know what to say, because that way we can reply and share our hearts with you.

There are many very good articles written by people like me who live with pain about what life is like for us. If you know anyone online who lives with chronic pain or illness, then you most likely have heard an expression about "the spoon theory" or "spoonies". It's a way a lady made up to explain to a friend what her life was like now, and it resonates with all of us.

To put it simply, she explained that it's as though every person with chronic pain or illness is given 5 spoons at the start of each new day, and they must get through the entire day using only those spoons because they can't get anymore. Everything we do though can cost us a spoon. It depends on how our body is reacting that day, and how well we slept that night. So, on a good day, if we get out of bed and get dressed, that costs us 1 spoon, so now we only have 4 left for the entire day. But, on a bad day, just getting out of bed may use up one of our spoons, and getting dressed a second one, leaving us with only 3 left for the rest of the day. And so it goes through the whole day for us. What we used to do without even thinking about it, we now have to think about and decide if it's worth doing or not and if it is, then how many spoons will we lose doing it? If you've never read it, I really hope you will because it will really help you understand what people like us deal with on a day to day basis.

You can read the story here in English and they also have it translated into Spanish, French and Hebrew. The link for those is at the end.
http://www.butyoudontlooksick.com/wp...-spoon-theory/

Another good article is called Understanding Chronic Pain
An open letter to anyone who has a chronic pain patient in his or her life. and can be read here:
http://www.healthcentral.com/chronic...-287065-5.html

Finally, there's one that many have already read which I'll include at the end of this post:
The Challenge Of Living With Chronic Pain

Please know though that the most important thing to us is that you understand that we're not looking for sympathy or pity. What we want more then anything in the world, is simply that you understand us, and the only way that can happen is if you're willing to talk about it with us Yes, it will be uncomfortable at first. Believe it or not, it's uncomfortable for us too. We don't want to scare you or upset you so we're unsure of just how much to say, what parts we should talk about and what parts we shouldn't, etc. So you see, we have fears too.

Mostly, we just want you to love us and accept us just the way we are, for who we are now. This whole dialog thing may scare some of us even more then it scares you. That's why the author of the book I told you about said it wasn't always totally the other persons fault when they stopped calling. Sometimes we're the ones to clam up. If we do, just reassure us that it's ok, you're still going to love us. Don't worry if we cry. Just hand us a tissue or three or four .

Most of us with chronic conditions, spend our time around other people both online and in "real life", trying to pretend to the best of our ability, without actually lying, that we're normal and have normal daily lives. That's why we have the private forum here on FH, so that the masks can come off and we can be real for a little while. We don't want to be different. So for us, we're learning to accept our lives the way they are and deal with things the way they are now.

Often, one of the hardest lessons for us to learn, is to accept help from others and even harder is to actually ask for that help. Most of us are used to being the ones that helped others and we don't like being on the other end of the stick. Even after almost 14 years, this is still very hard for me.

Even if you don't know anyone that's living with chronic pain or illness, I still hope you'll read those articles, because sooner or later you'll meet someone like that and then at least you'll be a bit ahead of the game.

If you do know someone who deals with chronic pain or illness, then please, tell them you want to understand what they're dealing with every day. Tell them you're aware that it might be awkward at first for both of you, but that the Lord told us to bear each others burdens and you can't do that if you don't know what the burden really is. Make a deal with them that when the conversation starts to get to heavy, or overwhelm either of you, that you both will agree to simply say so and end the talk until the next time you're together. And be sure to set a date when you can be together again soon!

Don't be afraid to tell us if we start to get to technical too. Because of our condition, many of us have done a great deal of research and learned all we can about our condition, so we can get carried away and forget that you may not be familiar with a lot of the terms that are now second nature to us. And don't feel badly for not knowing those terms, because we didn't know them either until we had to learn them out of self defense.

Promise each other that you'll both be honest about your feelings each day and that you won't try to hide the truth from each other or even yourselves. Hold each other accountable, pray with each other and always invite the Lord into your conversations. I know that helping each other and protecting your friendship this way will please the Lord too, for He tells us that what we do for each other, we do for Him as well.

I can promise you one other thing as well. The awkwardness you may feel at first when you begin discussing this with each other, will quickly pass. Not only will it pass, but no matter how close you were before, you will find you're even closer to each other now. Finally, please realize that this "conversation" won't continue forever. Once you have a good understanding of what your friend is really going through every day, then it won't be needed anymore. At that point you'll find that you both now have a real friend that you can talk to about absolutely anything. One you can laugh with and cry with, without being uncomfortable.

May God bless those who are willing to stretch themselves beyond their comfort zone for the sake of a friend in pain.

PS: There is something you could easily do to help many of us when you post on line. Many of us also have trouble with our eye sight. So it helps a great deal when people make their posts bold. We can make the text larger on our computers ourselves (those of us who have figured out how to do that) but we can't make it darker. So if you're interested in helping us out, that would be one quick and easy way you could do so.

The Challenge Of Living With Chronic Pain

New Ipswich woman says internet has become a lifeline for those who are suffering

By Sam Bonacci
Monadnock Ledger-Transcript Staff



next to the photo above it says:
Here's the first mistake: next to the photo above it says:
"Cindy sits at her computer, reading posts in http://www.fresh-hope.com, the private pain forum she started online. The forum allows people with chronic pain to speak with others about what they are all going through."
Obviously FH is not just for people who live with pain, only one of the forums is for that.

Cindy has been living with chronic back pain for 8 years. The 52 year old New Ipswich resident found herself with the never ending pain after an on the job injury damaged disks in her back. Cindy has gone through more medicines than she can recall, numerous surgeries, and much physical therapy. But nothing has taken away the pain.

"It never occurred to me that I wouldn't be fixed", she says.

Cindy has fought for years to find a way to get rid of the pain, until it was made clear by a doctor that this was her new life.

"I'll never forget him saying, "you're done, you'll never work again the rest of your life" The words literally rang in my head and I didn't hear anything else he said."

Cindy has learned to live with the pain that has changed her life. Unable to work, a good day has become one with less pain, not none. The act of getting up in the morning and getting dressed takes determination.

"A good day is one where I only have to use my morphine a few times," says Cindy.

Chronic pain can be very difficult to understand. It differs greatly from the acute pain of an injury such as a broken bone, and can linger for years, even for the rest of a person's life. I'ts called chronic pain for a reason," says Dr PK Suchdev, the president of Pain Solutions, a practice that deals specifically with treating pain and has an office at the Monadnock Community Hospital. We look at it in many ways like you would look at diabetes and blood pressure...we can control it, but sometimes eliminating it may be an unrealistic expectation."

Chronic pain is defined as any pain lasting more than 3 months. Chronic pain will be experienced by 50% of Americans in the lifetime, he said. People that suffer from chronic pain should not feel they are alone", says Suchdev.

Cindy's pain starts even before she wakes up in the morning. Getting out of bed can be a trying experience that takes her hours.
(another mistake--it doesn't actually take hours lol it just seems like it!)
She cannot work and is limited in the amount of time she can spend away from her home. Everything she does in a day is a matter of gauging how much pain it will cause, and how that will affect the rest of her day and the next. Being at home with chronic pain is nothing like when a healthy person stays home when they are sick.

"My life revolves around pain," says Cindy, adding that just getting dressed is a chore. "The rest of my day is planned around my pain".

It is not just her daily life that the pain affects. Cindy has never been healthy enough to play with any of her grandchildren. They have always had to grow up being told to be careful around her.

(note by me: a mistake: that's not true. I DO play with them, but it's quiet play not running or jumping, somersaults, or rough housing or anything active at all.)

Chronic pain can be caused by a number of things, says Suchdev. It varies from instances where the body is giving misinformation such as phantom limbs in amputees, or where a physical injury such as multiple back injuries, scars, or surgeries, continues to cause pain. Chronic pain can also be related to injuries severe enough that they are not treatable", says Suchdev.

Cindy has gone through a number of treatments, but none of them fully relieved the pain. Even the narcotics she is on now merely dull the pain.
"They relieve the pain to the point where you can deal with it", she says. There are numerous ways that chronic pain can be treated, says Suchdev. Painkillers can be injected. Surgery can be done to burn the lesion specific nerves that provide the pain. Doctors can also implant various devices that can be used to inject relief into the source of the pain. The simplest example would be to place a steroid medication into areas of the spine to reduce swelling," says Suchdev. "Pain is very complex and that is why it has to be treated in a very complex and multidisciplinary manner."

Pain does not only affect the body, but also the mind, he says. There can be problems with family and friends, and there are instances of depression in chronic pain patients.



caption under second photo reads:
Cindy sits in her kitchen in the house in which she spends most of her days. Although she has put on a smile, she says people living with pain must make a conscious decision to continue smiling and not be gloomy all the time.

Cindy said that although it can be difficult to be happy, it is necessary. "People expect us to be gloomy", she says. "you can afford to be gloomy and down in the dumps for a week , and let people know you don't feel good. But when you are like this for years, that's a choice you have to make. You have to choose what kind of face you are going to put on it. Those of us who learn to live with it, successfully anyway, choose to smile and it actually helps us too, because you feel better when you smile".

The pain and the new lifestyle can create a rift between people with chronic pain and those they used to spend time with. Eventually, people start to come around less often and friends lose touch, says Cindy. "I don't blame them because they're busy just like I used to be," she says.

There's also a stigma that comes along with chronic pain, she says. Some people think that people with pain are drug addicts or may be faking it. People with chronic pain often do not look sick, Cindy says. Someone she knows has even been accosted for using a handicapped parking permits, while others have heard comments while they walk by holding their cane. They may not need it when they walk into a store, said Cindy, but after walking around they will be hurting and relying heavily upon the cane as they come out.

"We want understanding, not pity," says Cindy. "We try not to let it show. We don't want to be different".

Cindy has found solace in an online forum she started at http://www.fresh-hope.com. Through this private forum, she and other people suffering through pain can speak openly about their lives. Cindy says many forum members reveal sides of their life that they may not show even their closest loved ones.
"The internet has become a lifeline for lots of us because we are stuck at home, " she says. "The people on fresh-hope are like family to me".

Chronic pain is not just a concern of the patients and their families and friends. The cost of treating chronic pain, says Suchdev is more then the cost of treating AIDS, cancer and heart disease combined. "It's an incredibly expensive and large epidemic in the country, so there's a lot of research being devoted to the treatment of chronic pain,"he says. "Ten or 15 years ago I could have only imagined some of the treatments we have now." The latest research is exploring the connection with phantom limb syndrome.

But Cindy has stopped looking for the next new treatment, although she continues trying different medications and will be returning to physical therapy. She will continue dealing with her pain as she has for the last 8 years, through the support of her family and friends both online and in person. She will carry on with her routine, taking the bad and continuing to live for the good.

"Finally your body will give you a break, only if it's just for an hour. You learn to kind of live for that hour's relief" says Cindy. It's strange. It's a very different way of life."

In all the excitement about the article, I never realized that it also made the front page of the newspaper! Check it out, right at the very top!

please feel free to copy this and send this to anyone you want to! Or send them a link to it as even lurkers can read this. The more that see it, the better as far as I'm concerned!

Sadly, my website where I had the private forum for those who live with pain is gone now. As my health deteriorated I could no longer keep up with everything on the site and had to close it. Now we use a free board for those who still want to keep in touch. The only thing that's the same is the name since I own the domain name of fresh-hope.com.