Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
I feel that past involvements with the 12 Step way of life has been a tremendous benefit to me in dealing with ME/CFS. I had suggested this a couple of times with some positive response from others, so let's have at it and see what happens. I apologize for length - it was kind of necessary just this first time in order to explain the concept.
The original 12 Step Group was Alcoholics Anonymous. Founded by Bill W. and Dr. Bob back in the 1930's, AA was formed out of a wildly popular non-denominational 4 Step movement in the U.S. based on a spiritual way of life.
There was just one problem - the groups didn't quite know what to do with alcoholics, and the social stigma attached to the illness only made things worse. The main body simply didn't believe that an alcoholic was capable of a spiritual experience, and the pattern of relapses only reinforced that unfortunate belief.
So Bill and Dr. Bob broke off into a their own group. Bill W., a former business analyst, and Dr. Bob, a physician, began explaining their idea to others suffering from alcoholism in Akron Ohio. The idea spread quickly. In 1939, the first 100 members wrote a book breaking the original 4 steps down further into 12 smaller steps which even a drunk could follow, if they were willing. The idea was that it needed to be even simpler for an alcoholic to follow.
It has been suggested that any person with any problem could read the Big Book of Alcoholics Anonymous and replace the word alcohol or alcoholism with their own problem and solve any difficulty just as effectively. In my own experience, this has turned out to be true, and I have seen it work on dozens upon dozens of conditions, troubles, and situations for those who have tried it.
Today, the AA membership is numbered in the millions and over 100 like-minded groups have come into existence, each dedicated to serving a particular diffficulty or illness. The first of those was Alanon - founded by Bill W.'s wife Lois, who had supported his group. Alanon was for the spouses, families, and friends of the recovering alcoholics. The steps remain the essentially the same for all.
Whether you ever knew it or not, these things are going on around the clock, all over the world. In a large city, it's usually possible to be at meetings all day, every day. They happen in churches, jails, institutions, restaurants, public halls and private homes all over the globe. In the early 1990's, even before the advent of the internet, the first electronic AA group was created via the old bulletin boards. That group quickly became international, and is still in existence today.
Most live meetings begin with a welcome and a reading of the preamble, sometimes a reading of the twelve steps and 12 traditions, and then follows whatever format the group has chosen for itself. At the end, whoever is leading the meeting asks someone in the group to "pray us outta here", which usually means to join hands in a circle and begin the Serenity Prayer.
The online version is pretty much the same - though any group can make its own way of doing this. For us, I thought that maybe the best way to do this was to begin only with the first Step. If an alcoholic can only do smaller, simpler steps...then we probably ought to go at it even slower! (I actually had to look up Lois's name, though I've known it for years and used it often, if that gives a clue.)
So - on to the FIRST EVER meeting!
Here is the Preamble. I have not altered the words from AA's version. I put it here as-is so those unfamiliar could get a sense of what a 12 Step group is and does. It could easily be re-worded to suit us, if desired.
"Alcoholics Anonymous is a fellowship of men and women who share their experience, strength and hope with each other that they may solve their common problem and help others to recover from alcoholism.
The only requirement for membership is a desire to stop drinking. There are no dues or fees for A.A. membership; we are self-supporting through our own contributions. A.A. is not allied with any sect, denomination, politics, organization or institution; does not wish to engage in any controversy, neither endorses nor opposes any causes. Our primary purpose is to stay sober and help other alcoholics to achieve sobriety."
So why not begin with just the first step? As with the other 12 step groups, all are welcome. For AA, the usual intro is "I'm [first name only], and I'm an alcoholic." I guess for us that whttp://dailystrength.org/component/option,com_joomlaboard/Itemid,53/func,post/do,reply/catid,684/type,1
DailyStrength.orgould be, "I'm Serena, and I'm a PWC."
The first step in AA goes like this:
"We admitted we were alcoholics and our lives had become unmanageable."
Because of all the politics and strife over even the name of this illness, I would suggest for us:
1. We admitted we were powerless over chronic illness, and our lives had become unmanageable.
I see so many parallels to our own situation! Symptoms come and go throughout each day. We are told, and often tell ourselves that "it's 'just this or that' causing it all, or even that we are imagining it. Drunks like to say they "only drink on weekends" or they "wouldn't drink if so-andso wasn't so rotten". Others want to say it's all because of some character defect or psychic after-effects of some life experience. Yet others want to say we're simply lazy, lack self-discipline, and don't try hard enough.
The thing can go on for months or years in a state of denial. To my mind, that in itself is the worst. When those around us reinforce the notion that it doesn't exist, the root problem of not even admitting to the illness becomes more than a little difficult. Whatever we choose to call this thing, and however we decide to treat it or not - nothing moves until we have that first solid realization. This thing is real, we have it, and now what?
Aren't we powerful enough to simply decide it doesn't exist? Haven't we worked through every other life problem that confronted us? What if I DID try just a little harder? Well, this thing's not going to get the better of ME!
I had a WHOLE lot of trouble with that idea of powerlessness! That is, until I found myself in bed, unable to rise, to speak intelligibly, to take care of even basic needs. Just exactly how powerless do you have to be before you can say, "I'm powerless", anyway?
I had learned I was powerless over addictions, powerless over addicts, and powerless over all kinds of things long before being confronted with this new thing. I barely made it through the first 2 year bout with this illness. Then, during a period of relative recovery, I made a friend - a recovering alcoholic with multiple sclerosis. We talked often of his experiences and how the 12 Steps could apply to chronic illness, never knowing that before long, I would also be hit with chronic illness myself.
We often talked about the idea that 'recovery' is not a cure. It's about how you get through each day with a chronic illness. It doesn't mean you stop seeking a cure, if one is to be had. But likewise, you don't declare yourself 'well' merely because you achieve some recovery. Many an alcoholic or addict has died after declaring themselves 'well' - that is, falling right back into denial simply because things are going well at the moment.
Acceptance of the situation is an act. But it's also a process. I still have to stop each day and firmly remind myself that this IS my situation. What I do about it and how I handle it from here on out is a choice. But I am powerless over the fact that it already exists. Just that. It exists. Not by my own will or my desires, to be sure! If I HAD power over it, I might have chosen just about anything but this. But it does exist - and that it itself proves that I am powerless over it. No matter how much I may dislike making that admission, it is purely an ego problem on my own part. Maybe some day, it won't exist any more. Maybe someday, a cure. But for today, I cannot change that one single fact. I admit I am powerless over chronic illness, and my life has become unmanageable.
Welcome all, grabba cuppa, smoke 'em if ya got 'em, the chocolate's on the table. Feel welcome to share your thoughts on this topic.
The original 12 Step Group was Alcoholics Anonymous. Founded by Bill W. and Dr. Bob back in the 1930's, AA was formed out of a wildly popular non-denominational 4 Step movement in the U.S. based on a spiritual way of life.
There was just one problem - the groups didn't quite know what to do with alcoholics, and the social stigma attached to the illness only made things worse. The main body simply didn't believe that an alcoholic was capable of a spiritual experience, and the pattern of relapses only reinforced that unfortunate belief.
So Bill and Dr. Bob broke off into a their own group. Bill W., a former business analyst, and Dr. Bob, a physician, began explaining their idea to others suffering from alcoholism in Akron Ohio. The idea spread quickly. In 1939, the first 100 members wrote a book breaking the original 4 steps down further into 12 smaller steps which even a drunk could follow, if they were willing. The idea was that it needed to be even simpler for an alcoholic to follow.
It has been suggested that any person with any problem could read the Big Book of Alcoholics Anonymous and replace the word alcohol or alcoholism with their own problem and solve any difficulty just as effectively. In my own experience, this has turned out to be true, and I have seen it work on dozens upon dozens of conditions, troubles, and situations for those who have tried it.
Today, the AA membership is numbered in the millions and over 100 like-minded groups have come into existence, each dedicated to serving a particular diffficulty or illness. The first of those was Alanon - founded by Bill W.'s wife Lois, who had supported his group. Alanon was for the spouses, families, and friends of the recovering alcoholics. The steps remain the essentially the same for all.
Whether you ever knew it or not, these things are going on around the clock, all over the world. In a large city, it's usually possible to be at meetings all day, every day. They happen in churches, jails, institutions, restaurants, public halls and private homes all over the globe. In the early 1990's, even before the advent of the internet, the first electronic AA group was created via the old bulletin boards. That group quickly became international, and is still in existence today.
Most live meetings begin with a welcome and a reading of the preamble, sometimes a reading of the twelve steps and 12 traditions, and then follows whatever format the group has chosen for itself. At the end, whoever is leading the meeting asks someone in the group to "pray us outta here", which usually means to join hands in a circle and begin the Serenity Prayer.
The online version is pretty much the same - though any group can make its own way of doing this. For us, I thought that maybe the best way to do this was to begin only with the first Step. If an alcoholic can only do smaller, simpler steps...then we probably ought to go at it even slower! (I actually had to look up Lois's name, though I've known it for years and used it often, if that gives a clue.)
So - on to the FIRST EVER meeting!
Here is the Preamble. I have not altered the words from AA's version. I put it here as-is so those unfamiliar could get a sense of what a 12 Step group is and does. It could easily be re-worded to suit us, if desired.
"Alcoholics Anonymous is a fellowship of men and women who share their experience, strength and hope with each other that they may solve their common problem and help others to recover from alcoholism.
The only requirement for membership is a desire to stop drinking. There are no dues or fees for A.A. membership; we are self-supporting through our own contributions. A.A. is not allied with any sect, denomination, politics, organization or institution; does not wish to engage in any controversy, neither endorses nor opposes any causes. Our primary purpose is to stay sober and help other alcoholics to achieve sobriety."
So why not begin with just the first step? As with the other 12 step groups, all are welcome. For AA, the usual intro is "I'm [first name only], and I'm an alcoholic." I guess for us that whttp://dailystrength.org/component/option,com_joomlaboard/Itemid,53/func,post/do,reply/catid,684/type,1
DailyStrength.orgould be, "I'm Serena, and I'm a PWC."
The first step in AA goes like this:
"We admitted we were alcoholics and our lives had become unmanageable."
Because of all the politics and strife over even the name of this illness, I would suggest for us:
1. We admitted we were powerless over chronic illness, and our lives had become unmanageable.
I see so many parallels to our own situation! Symptoms come and go throughout each day. We are told, and often tell ourselves that "it's 'just this or that' causing it all, or even that we are imagining it. Drunks like to say they "only drink on weekends" or they "wouldn't drink if so-andso wasn't so rotten". Others want to say it's all because of some character defect or psychic after-effects of some life experience. Yet others want to say we're simply lazy, lack self-discipline, and don't try hard enough.
The thing can go on for months or years in a state of denial. To my mind, that in itself is the worst. When those around us reinforce the notion that it doesn't exist, the root problem of not even admitting to the illness becomes more than a little difficult. Whatever we choose to call this thing, and however we decide to treat it or not - nothing moves until we have that first solid realization. This thing is real, we have it, and now what?
Aren't we powerful enough to simply decide it doesn't exist? Haven't we worked through every other life problem that confronted us? What if I DID try just a little harder? Well, this thing's not going to get the better of ME!
I had a WHOLE lot of trouble with that idea of powerlessness! That is, until I found myself in bed, unable to rise, to speak intelligibly, to take care of even basic needs. Just exactly how powerless do you have to be before you can say, "I'm powerless", anyway?
I had learned I was powerless over addictions, powerless over addicts, and powerless over all kinds of things long before being confronted with this new thing. I barely made it through the first 2 year bout with this illness. Then, during a period of relative recovery, I made a friend - a recovering alcoholic with multiple sclerosis. We talked often of his experiences and how the 12 Steps could apply to chronic illness, never knowing that before long, I would also be hit with chronic illness myself.
We often talked about the idea that 'recovery' is not a cure. It's about how you get through each day with a chronic illness. It doesn't mean you stop seeking a cure, if one is to be had. But likewise, you don't declare yourself 'well' merely because you achieve some recovery. Many an alcoholic or addict has died after declaring themselves 'well' - that is, falling right back into denial simply because things are going well at the moment.
Acceptance of the situation is an act. But it's also a process. I still have to stop each day and firmly remind myself that this IS my situation. What I do about it and how I handle it from here on out is a choice. But I am powerless over the fact that it already exists. Just that. It exists. Not by my own will or my desires, to be sure! If I HAD power over it, I might have chosen just about anything but this. But it does exist - and that it itself proves that I am powerless over it. No matter how much I may dislike making that admission, it is purely an ego problem on my own part. Maybe some day, it won't exist any more. Maybe someday, a cure. But for today, I cannot change that one single fact. I admit I am powerless over chronic illness, and my life has become unmanageable.
Welcome all, grabba cuppa, smoke 'em if ya got 'em, the chocolate's on the table. Feel welcome to share your thoughts on this topic.
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
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I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
My dad was the alcoholic and of course I didn't have any problems whatsoever LOL.
I have learned so much from these groups. I've learned forgiveness, being tough, how to take care of myself and most of all how not to be co-dependent. I honestly believe I chose well in marriage because I had been a member for so long in these groups. They are awesome. Thanks for bringing this up and again count me in.
Can we start a thread about lessons learned in the 12 step program. I have some good ones.
My husband is a recovering alcoholic, sober 8 years, thank God. He has explained to me the meaning of acceptance and powerlessness and I, like you Serena, have had trouble with the whole powerlessness concept.
After spending the first three months with this illness flat on my back in bed, I knew I was powerless, I just didn't know over what! Now I do know and I think you have a brilliant idea here about acceptance.
This is CFIDS, I have it, I accept it, am powerless to do anything about it, period. I won't waste any time feeling sorry for myself, I will enjoy the days when I have strength to function. I will not push too hard when I feel some slight energy amd cause myself more discomfort.
I will also surrender. That doesn't mean I give up. That means I get it! I have this illness and it's not going to disappear. It's mine, I surrender to the realization that it's mine to deal with.
One more part of AA, that I know we all know is "one day at a time" This is sooooo important, right? That's all we have. Today. We have to make the best of today. Give what we can to others, our family, friends, co-workers and put ourselves and our healing as top priority. I must learn when to say "no", or "I just can't", with no apology. It's not about pride. It's a matter of acceptance.
I read you loud and clear. I'm also going to mention the "higher power" that alcoholics refer to. Whether it's a bookshelf or the dear Lord in heaven, we have to give this illness over, because we can do absolutely nothing about it in and of ourselves.
So, I accept CFS. I turn this illness over to God. I realize I am powerless over my chronic illness, and I am so very thankful for people like Serena who care enough to help guide me through.
Thank you Serena. Love you, Darla
If I fail to beat this in the next 10 years, I'm sure I'll be relieved to finally let go and join your 12-step. Until then, I think I'd like to join a local support group for young women trying to cope and overcome CFS/FM. Wherever you are at in your stage of development, it is always helpful to have a group to relate to.
Either way, what you're starting is much appreciated!
You can count me in too. I think this is a great idea.
I too am in a 12 step recovery program (alanon).
Although still new and I still struggle with the powerlessness issue at times but it absolutely does apply to so many other areas of our lives.
So today my life in so many areas is unmanagable. Uh!
Rosanne~
Can I suggest we do a 12 Steps and 12 Traditions meeting format for the benefit of those who haven't had any contact with them before? (That is, we pick off the next step each week until we finish them, and then go on to the 12 Traditions.) It would also give us a chance to see how we might want to adapt the words to suit our situation.
Just a thought. Ducking out for Kleenex, and to update my gratitude list.
Hugs to each and every one of ya!
~Jackie
I've been actively involved with 12 Step Spirituality for nearly 20 years. During the darkest days of CFS, it was my faith, the 12 Steps and the Fellowship which carried me through.
Andrew