INTRODUCTION
Good Afternoon,
My name is Shailen and I suffer with Chronic Pain.
I would like to start this meeting by first thanking God, for this Support Group is his idea. I would like to thank Pastor Ben, for he is prepared to support us and for providing us with the Church as a Venue. I would like to thank my family for all the support that they have given me over all these years and are still able to stand my nonsense from time to time. I very humbly ask for your forgiveness and I humbly apologize for all the wrong that I have done to you. I would like to thank “You (the members)”, “You” make up the Support Group and to all the others that have supported this group to be a success.
I would like us to officially start this meeting with a prayer. Pastor Ben
Thank you Pastor.
Living through difficult circumstances can be emotionally and mentally exhausting. Having a support group can make you feel less lonely or stressed and give you a sense of control over your situation. Even if you don't currently know anyone who has gone through your unique experiences, you can seek out the advice of others and build a community of support.
The purpose of a chronic pain support group is to offer information, education and emotional support to those with chronic pain and to family and friends affected by the syndrome. The sharing of information and ideas creates a huge pool of resources from which to draw. More importantly, many who attend a support group for the first time are so happy and relieved to find others who have the same issues — whether they have the experience of patient or caregiver. They realize that they are not alone. Please do not use selective hearing during our meeting but rather keep an open mind and try to be more objective to suggestions that are made. The first step to any recovery program is that one has to identify his or her problem and accept that they have a problem. Yes, I suffer with Chronic Pain.
Offering healing and hope to people with disabilities is an essential mark of God’s reign and a sign that Jesus, our Messiah, is present and active (Matt 11:4-5). You may also quote the Religion of your belief. One way to reach out with caring to individuals and families impacted by disability is through a support group.
The heart of what support groups are about; is breaking into the isolation of living with a given challenge, so plan deliberately to nurture connection.
Support groups bring together people who are dealing with similar difficulties so that they can learn from each other and draw strength from the community that is formed. If no support group exists nearby for the people you want to support, consider starting one yourself. Whether you focus on faith openly in the group or choose to keep it in the background, you will have the opportunity to build relationships of caring that embody Christ’s love.
Starting a chronic pain support group can be the most rewarding thing you've ever done. It can also be the most difficult. My friends and most family members did not-and could not-understand what I endured living every day with chronic pain. I found myself growing bitter.
Then one day, as I was waiting for my daughter in the car, a homeless man passed by. He saw me wince and I was dripping with sweat as my body could not handle the pain any more. Looking into my eyes, he said gently, "Your body hurts. I hope it gets better soon." Then he walked on.
Those simple words changed my life. This stranger, this man who had his own pain and his own troubles, reached out to me. At that moment, I realized I had to find other people who also understood. Months later, I spoke with two people, to talk about chronic pain and how it had changed our lives.
This was to lead me in a direction that no one would expect. I finally got the courage to open a Support Group for People suffering with Chronic Pain, Cancer and or Disabilities’.
The motivation part is simple: if Chronic Pain is a problem for you – you’ll find out more about it and how it affects others who are in the same boat. You can be totally selfish about it and why not, you’ll be the first in line to get support. If Chronic Pain no longer is a problem for you, it is immensely satisfying to share your experiences with others on how to overcome the problem(s) you had with it.
At first you might think the information part is harder: what, or how much, do I need to know? What qualifications do I need? The answers: not much and not much. Consider the function part of peer-to-peer support group: people sharing feelings and if available, information. Peer-to-peer means meeting folks like yourself, folks who are in the same boat. Support groups are about helping one another with emotional support. Support groups are not about finding cures, or researching and debating medical theories and procedures, or fixing problems – those are the jobs of medically trained experts. If you are in the medical field and want to start a group: pat yourself on the back. If you happen to know just a bit about Chronic Pain and can answer some of the common questions, that’s great. If not, that’s OK too.
How can joining a support group change the life of someone with chronic pain?
When suffering with an often-misunderstood and painful syndrome, it is very welcome to have others understand you and to offer emotional support, suggestions, and advice on what may help. This feedback may lead to treatments not considered before, a better way to handle a situation, or just knowing you are not alone in this. A lot of people who attend meetings for the first time have never met another Chronic Pain patient. Yes, going to a Support Group Meeting is a catch 22 situation. A person is in pain, and is expected to go to a meeting and sit for a few hours more and endure more pain. So one would ask; “how is this beneficial to me?” Quite simply the answer is in the meeting of other people that share the same problems that you have and to learn how they overcame their problems. You will be surprised to learn that there are techniques that you may not have tried and maybe that could help you in your day to day chores.
Our Support Group will have to have some guide lines by which we should adhere.
Mission: Support through the Power of Love (John13:34)
Joh 13:34 I give you a new law: Have love one for another; even as I have had love for you, so are you to have love one for another.
Vision: To live a better Life knowing that you are not Alone (John14:18; Deu31:8)
Joh 14:18 I will not let you be without a friend: I am coming to you.
Deu 31:8 It is the Lord who goes before you; he will be with you, he will not take away his help from you or give you up: so have no fear.
Rules:
1. No discrimination and judging of others
2. No undermining of Doctors, No Doctor bashing! We do not allow this. Doctor – Patient relations are private
3. No selling of anything
4. Show care and support for others
5. Respect others and their problems
Now that we have an understanding of where we are going with this Support Group, we need to understand that this is a two way conversation. This Group has been formed for you. Each time we meet one person will share their story with us and as a group we will try and find solutions or ways to help that person deal with their situation or symptoms. Each time we meet, we will discuss different symptoms that affect us on a daily basis, for example:
1. Understanding Chronic Pain
2. Pain Management Treatments available for you
3. Guest Speakers, Doctors and so forth
4. Depression, Anxiety, Loneliness
5. Physical Therapy
6. Psychological Treatment
7. Alternative Therapy
8. Mind-Body Therapy
9. Am I the only one that suffers? No.
10. How can I teach my Family to understand my condition?
And Many, Many other topics.
Now I would like for each person to introduce themselves, tell us your name, your condition if you wish; and if you are a sufferer or caregiver.
Thank you
How often would you like for the group to meet? Fortnightly
What time would be the most suitable for you? 16:00
What would you like to learn from our meeting? Open for Discussion
How long would like the meeting to be for? 1 to 1½ hours
Would you like to be invited to our group on our “WhatsApp” site? Yes
What would make you more comfortable? Maybe Tea or Coffee (however since this a nonprofit organization, we would need to collect donations for that).
Would you like to have once in a while a fun day, like maybe everyone bring finger snacks or maybe give gifts to someone (gifts will have to a limit to it and can consist of something that you have made).
What else would you like to see from our group or you would expect? Point Form Notes
Maybe, everyone should bring a book and pen or pencil, maybe there is something interesting that is spoken and you would like to write it down for later reference?
Thank you
Today we will discuss the “Understanding of Chronic Pain”
What Is Chronic Pain?
Over 10,000 million people suffer from chronic pain, defined as pain that lasts longer than six months. Chronic pain can be mild or excruciating, episodic or continuous, merely inconvenient or totally incapacitating.
With chronic pain, signals of pain remain active in the nervous system for months or even years. This can take both a physical and emotional toll on a person.
Chronic pain is a disease of the central nervous system. It is defined as “pain without apparent biological value that has persisted beyond normal tissue healing time” It is also defined as pain that either persists beyond the point that healing would be expected to be complete (usually taken as 3-6 months) or that occurs in disease processes in which healing does not take place. The pain may be continuous or intermittent. Chronic pain can be experienced by those who do not have evidence of tissue damage or biological reason for pain (taken from the International Association for the Study of Pain, 2007). This ‘unknown cause’ factor often results in difficulty in reaching a diagnosis.
This type of pain can be nociceptive, or can be neuropathic i.e. handled by a dysfunctional nerve or cluster of nerve signals. People living with chronic pain often report hyperalgesia (increased sensitivity to pain), allodynia (heightened pain response to usually non-painful stimuli) or dysaesthesia (unpleasant abnormal sensations). Chronic pain can also arise from other types of pain.
The most common sources of pain stem from headaches, joint pain, pain from injury, and backaches. Other kinds of chronic pain include tendinitis, sinus pain, carpal tunnel syndrome, and pain affecting specific parts of the body, such as the shoulders, pelvis, and neck. Generalized muscle or nerve pain can also develop into a chronic condition.
Chronic pain may originate with an initial trauma/injury or infection, or there may be an ongoing cause of pain. Some people suffer chronic pain in the absence of any past injury or evidence of body damage.
The emotional toll of chronic pain also can make pain worse. Anxiety, stress, depression, anger, and fatigue interact in complex ways with chronic pain and may decrease the body's production of natural painkillers; moreover, such negative feelings may increase the level of substances that amplify sensations of pain, causing a vicious cycle of pain for the person. Even the body's most basic defenses may be compromised: There is considerable evidence that unrelenting pain can suppress the immune system.
Because of the mind-body links associated with chronic pain, effective treatment requires addressing psychological as well as physical aspects of the condition.
What Are the Symptoms of Chronic Pain?
The symptoms of chronic pain include:
• Mild to severe pain that does not go away
• Pain that may be described as shooting, burning, aching, or electrical
• Feeling of discomfort, soreness, tightness, or stiffness
• Pain is not a symptom that exists alone.
Other problems associated with pain can include:
• Fatigue
• Sleeplessness
• Withdrawal from activity and increased need to rest
• Weakened immune system
• Changes in mood including hopelessness, fear, depression, irritability, anxiety, and stress
• Disability
Doctors who specialize in treating chronic pain now recognize that it is not merely a sensation, like vision or touch, but rather chronic pain is strongly influenced by the ways in which the brain processes the pain signals and it is now understood to be disease.
Chronic pain can provoke emotional reactions, such as fear or even terror, depending on what we believe about the pain signals. In other cases (such as in sports or another engaging, rewarding activity), chronic pain may be perceived by the individual as merely a nuisance, a feeling to be overcome in order to be able to continue in the activity.
The important role the mind plays in chronic pain is clearly recognized in the medical literature, as well as in the International Association for the Study of Pain's definition of pain, which states that pain is always subjective and is defined by the person who experiences it.
The corollary is that the brain can also learn how to manage the sensation of pain. Using the mind to control chronic pain, or coping strategies, for managing persistent pain, may be used alone or in tandem with other pain management therapies.
Ideally, use of the chronic pain management techniques outlined in this sermon can help patients feel less dependent on pain killers and feel more empowered to be able to control their pain.
Managing Chronic Pain
Of course, the first step in coping with chronic back pain or other types of persistent pain is to receive a thorough medical evaluation to determine the cause of the pain.
In some situations, such as a herniated disc in the spine, it may be important to pay attention to the level and type of pain so that it can serve as a warning signal of impending damage.
In other cases, especially when the back pain is chronic and the health condition unchangeable, one goal can be to try and keep the chronic pain from being the entire focus of one's life.
Whatever the medical condition, there are a number of effective strategies for coping with chronic back pain. These techniques generally include:
Relaxation training:
Relaxation involves concentration; and slow, deep breathing to release tension from muscles and relieve pain. Learning to relax takes practice, but relaxation training can focus attention away from pain and release tension from all muscles. Relaxation tapes are widely available to help you learn these skills.
Biofeedback:
Biofeedback is taught by a professional who uses special machines to help you learn to control bodily functions, such as heart rate and muscle tension. As you learn to release muscle tension, the machine immediately indicates success. Biofeedback can be used to reinforce relaxation training. Once the technique is mastered, it can be practiced without the use of the machine.
Visual Imagery and Distraction:
Imagery involves concentrating on mental pictures of pleasant scenes or events or mentally repeating positive words or phrases to reduce pain. One can even try using their faith as a distraction. Reading or trying to recall scenes from the book of your faith; (e.g. Bible, Khuran or Bavaggaatha). Tapes are also available to help you learn visual imagery skills.
Distraction techniques
Distraction techniques - focus’ your attention away from negative or painful images to positive mental thoughts. This may include activities as simple as watching television or a favorite movie, reading a book or listening to a book on tape, listening to music, or talking to a friend.
One could also use Faith, read the scriptures of your belief and try to understand what God is saying to you.
Hypnosis:
Hypnosis can be used in two ways to reduce your perception of pain. Some people are hypnotized by a therapist and given a post-hypnotic suggestion that reduces the pain they feel. Others are taught self-hypnosis and can hypnotize themselves when pain interrupts their ability to function. Self-hypnosis is a form of relaxation training.
All of the above-describe techniques for coping with chronic back pain and other pain related issues make use of four types of skills:
Deep Muscle Relaxation
Distraction: moving attention away from the pain signals
Imagery: visual, sound or other pictures and thoughts that provide a pleasant and relaxing experience
Dissociation: The ability to separate normally connected mental processes, leading to feelings of detachment and distance from the chronic pain.
There are other methods that I have not discussed here today.
Chronic pain is not like other medical issues; it cannot be seen or measured, and there is no set protocol to "make it better." The unique and complicated factors that characterize chronic pain make it difficult to communicate what you are going through.
Types of Back Pain: Acute Pain, Chronic Pain, and Neuropathic Pain
So, what can you do; to help your family and friends understand?
Helping friends and family understand chronic pain can be difficult.
Chronic Pain As a Disease: You Often Ask yourself “Why Does It Still Hurt?”
This is my story, maybe you share or have a similar story, a story of a broken man who once was and can no longer be, but by the GRACE OF GOD I WILL. AMEN.
Having chronic pain means many things change, and a lot of the changes are invisible.
Unlike having cancer or being hurt in an accident, most people do not understand chronic pain and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me.
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about my finances, my family, my friends, and most of the time; I'd still like to hear you talk about yours, too.
Please understand the difference between "happy" and "healthy." When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or not 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 to.
Please understand that being able to stand up for 10 minutes doesn't necessarily mean that I can stand up for 20 minutes, or an hour. Just because I managed to stand up for 30 minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can’t 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.
You can repeat the above paragraph by substituting "sitting," "walking," "thinking," "concentrating," "being sociable," and so on; it applies to everything. That's what chronic pain does to you.
Please understand that chronic pain is variable. It's quite possible (and for many, it's common) that one day I am able to walk to the toilet and back, while the next day I'll have trouble getting two steps out of bed. 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 to, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.
Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise or do some things to "get my mind off of it" may frustrate me to tears, and is not correct. If I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctors 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 affect the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense? You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably mean that I do have to do it right now, it can't be put off or forgotten just because I'm somewhere, or I'm 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, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after hearing 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 is 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, the cooking, or the 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 believe, that “One Man Can Make A Difference”, Jesus did it for the Christians, Prophet Mohammed for the Muslims, Ram, Krishna, Hanuman for the Hindus.
Ask yourself, what, can I do to make a difference in someone’s life. If we start with one person, that is you, then imagine how many people will change and how much better life would become for everyone.
No matter what, one could break my body, strip me of everything, but no one and nothing can and ever will break my sprit.
I would like to be your friend, your brother or even your son, so please allow me. We should change the way we think. Instead of saying I am, say we are, instead of saying it was me, say it was us, instead of saying it is my, say it is our, because you are not alone, we are together as a group and we all have something in common. We share it together and we will fight it together and with the Grace of God we will overcome all Barriers. Amen
I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.
Are there any additional comments or questions on Chronic Pain?
"I see it's getting to be about the time we'd agreed that we'd stop, and I know many of you would like to get home, so I think we'd better wrap up for the evening."
"We talked a lot about our Support Group tonight and learnt on how to Understand Chronic Pain. We also learnt that we are not alone, there are people that care for us. Are there any last thoughts anyone would like to add?"
I want to say that giving HOPE to someone is the same as giving LIFE to that person. So keep up the good work and God Bless You.