LIVING WELL with FIBROMYALGIA September 2013 Volume 2 Issue 3

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Our 1 ever

COVER GIRL

September 2013

Volume 2: Issue 3

Gemma Woodall

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On Empathy, Stigma & Chronic Pain

by Dr John Quintner

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You Have a Lot of Nerve

by Anita Wheatley Bliss Myths

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FM Profile The Fibro Frog Amy Mullholand

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It’s a BIG, FAT Shame

by The Fat Fox

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How Are You THEY Feeling?

by Melissa Swanson

Regular Features 3

Introducing Our Regular Contributors

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What I have to Say

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And He Said

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Reviews

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POEM – Fibromyalgia & Me by Melanie Woodruff

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POEM - We the Disabled by Micky Cocker

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Fibromyalgia Awareness Wish List

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Dealing With the Loss of You

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Joy

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Stress and its Effect on Physical Pain

by Tracy Galvez 2

email: fibromodem@fibromodem.com blog: fibromodem.com Facebook page: www.facebook.com/FMawareness Twitter: @Fibromodem Shop at: shop.fibromodem.com Editor: Simone Moszkowicz FibroModem welcomes your feedback, comments and any appropriate contributions to further editions.

If you wish to contact FibroModem, please use the email address: fibromodem@fibromodem.com © Copyright FibroModem 2013 The views and opinions expressed here are not necessarily those endorsed by FibroModem .

Advertising policy statement FibroModem does not necessarily recommend the products and services advertised here. Please do not assume that anything advertised in these pages has been cleared, vetted or in some way approved by FibroModem.

Please exercise your own judgement about whether the advertised service or product is likely to help you personally and, where appropriate, take professional advice from your doctor or health professional before purchasing.

Advertisers Should you wish to advertise a product in this newsletter, please contact 3 at FibroModem admin@fibromodem.com.

Melissa Swanson lives with her husband, daughter, 3 cat and & their border collie puppy named “Ewe Bet I Can”.

In addition to Fibromyalgia, she has 10 of its “evil sidekicks” as she calls them. She works full time, chauffeurs her 13 year old Daughter and is enjoying slowly getting back into the dog world. She also enjoys her Aqua Zumba & Water gym classes, her online support group, her Facebook Page and writing her blog.

Melissa runs a Facebook page called Fibro Warriors ~ Living Life and, if you enjoy her writing, please visit her blog: This is My Life ~ Surviving Fibromyalgia

Joshua David is a 34-year-old Boston resident and copywriter who was diagnosed with FMS and CFS at age 26.

Joshua enjoys poetry, pottery and dog training. He can be found at Squidoo, his Wordpress website, Facebook, Twitter, and the Men with Fibro Community. With a beautiful wife whom he adores, a dog and cat, Joshua finds his hands, heart and days, full and satisfying.

Joshua will now be writing regularly for us, from a man’s point of view.

Diane-Marie Williams was born in Vermont, and raised in the Eastern Townships of Quebec, Canada. She is engaged to Michael Dussault-Jensen (the most wonderful man in the world).

Diane-Marie was diagnosed with FM in 2010. She is the Executive Director of Administration for Moms for Marijuana International

What I have to say

Introducing our cover model...

Gemma Woodall

Gemma is a freelance retoucher and model.

She was diagnosed in June 2012 and really didn't know too much about Fibromyalgia....she (like most of us) started to do some research and realised she was not alone in the Fibro Fight! Gemma was very lucky and had a fantastic rheumatologist who diagnosed her immediately. She wants to encourage others to not give up on a diagnosis and to get the right help.

She has since been diagnosed with bipolar affective disorder type two, myositis, dissociative fits, Chronic Denervation, myalgia and has previously suffered from endometriosis.

But, all of that won’t stop Gemma, she runs Gems Woodall Commercial (photography services) and FibroGems (a website fighting Fibromyalgia & Muscular Dystrophy, Bipolar Affective Disorder, Seizures & Myositis.

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on EMPATHY, STIGMA and CHRONIC PAIN Dr John Quintner is a retired Consultant Physician in Rheumatology and Pain Medicine who has maintained a long-standing interest in chronic pain conditions.

He has published a number of papers concerning Fibromyalgia Syndrome, Myofascial Pain Syndrome, Whiplash Associated Disorders, and Repetitive Strain Injury.

Have you ever wondered why people with chronic pain can be stigmatized in our society when we know from surveys that one in five of us experience this problem?

Empathy is a quality highly prized by health professionals as being a positive attribute to be conveyed by them to their patients. Defining empathy is difficult but essentially it conveys the capacity of the health professional to sense the emotions & feelings of the patient.

Derived from the Greek empatheia for “in suffering or passion,” empathy implies a process of sharing whereby a person is able to both accept & understand the expression of another person’s experience because it reflects his or her own experience.

Empathy functions as a foundation for other social behaviours (e.g. compassion, altruism) that allow one to enter the experience of the other person in an intuitive manner without the necessity of having to share that same experience, as is the case for sympathy. In clinical practice, the patient's lived experience of pain forms a common ground for understanding empathy.

However, empatheia includes the sharing of strong negative emotions. Such emotions arise when one’s very existence is under threat (which is a not uncommon experience of those in chronic pain) or when the legitimacy of the person’s distress is being doubted. These emotions are powerful & can even challenge the health professional’s inclination to remain in the same room as the patient!

The simulation theory of empathy proposes some form of mapping process from one person’s situation to another. Such mapping occurs automatically at an unconscious level. At the conscious level, rule-based reasoning then takes over in order to decode the experience of the other person. Obviously this reasoning process requires that a frank & honest discussion takes place between clinician & patient.

Brain imaging studies support the existence of this reciprocal process, suggesting that the act of observing others who are experiencing pain triggers activation of the very same neural networks that have been implicated in the lived experience of pain.

Importantly, these networks also include those that have been found to accompany the observation of strong negative emotional expressions in others, such as disgust, fear, anger & sadness.

Empathy may then change into a projection of negative emotion & judgment towards the other person, & even a conscious avoidance of compassion. When empathy is thus extinguished & compassion disappears, this process could be called “negative-empathy”.

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“Negative-empathy” leaves a vacuum that allows community-based stereotypes of chronic pain sufferers to enter & colour the clinical encounter. As such stereotypes often contain negative values (e.g. “putting it on,” “all in the mind”), “negative-empathy” on the part of their health professionals may then contribute to the complex process of stigmatisation of chronic pain sufferers.

Sociologist Erving Goffman described stigmatisation as a process by which the reactions of a community to specific personal characteristics reduce a person’s identity “from a whole & usual person to a tainted, discounted one”, causing that person to be discredited, devalued, rejected & socially excluded from having a voice.

In our society, it is not uncommon for chronic pain sufferers to be the bearers of stigmatic labels, such as whiplash, repetitive strain injury, chronic fatigue syndrome, fibromyalgia, & even non-specific low back pain. These labels can denote that their motives are suspect &/or the legitimacy or reality of their symptoms is in doubt.

They are also at risk of being placed in “moral jeopardy” should they fail to validate the therapeutic effectiveness claimed by their health professionals, or should they challenge their health professional’s power to control the relationship. The term “heart-sink” has been coined to describe patients in this situation.

A remedy for these potentially disastrous consequences of “negative-empathy” might commence with an examination of the “either/or” terminologies that are readily found both in health professional teaching & clinical practice: they include objective/subjective; normal/abnormal; & body/mind.

Recognition of how these dualistic frames can work against patients’ best interests would be integral to a program that seeks not to perpetuate them. The stage would then be set for the emergence of pain theories with greater explanatory power than those that are currently being employed by health professionals.

They would incorporate the findings from neuroscience as they compel clinicians to accept empathy in all its connotations as being of fundamental importance to the understanding & management of patients presenting with complex pain states.

A new model of clinical engagement will emerge, one that is both scientifically & ethically obliged to discard conceptual frames that perpetuate negative stereotypes. There must be no hidden rules of the consultation (such as those governed by power imbalance) that might hinder a harmonious engagement taking place between clinician & patient.

When proposing what might be termed a social neuroscience paradigm, we invoke the concept of the intersubjective or “third space” which allows for many different ways of communication.

In this space, the positive & negative experiences of both patient & clinician can be shared & negotiated, neither being an “expert” compared with the other, thereby resisting the entry of socially or culturally determined stereotypes. Inadvertent stigmatisation of their patients by health professionals would cease.

If the proposition advanced in the article is close to the mark, there is much work to do!

Adapted from: Cohen ML, Quintner JL, Buchanan D, Nielsen M, Guy L. Stigmatization of patients with chronic pain: the extinction of empathy. Pain Medicine 2011; 12: 1637-1643.

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Anita Wheatley is a fellow Fibromyalgia sufferer. As a writer and blogger, sitting and typing on the computer for long periods of time is challenging; but Anita just released her first book Choice for Change: Reflecting More of Him and can attest to what a pain it was to write (literally!) The book is available at Amazon.com, Barnes and Noble, and Family Christian Stores.

The doctor’s white cloaked arm reached across his desk to hand me a business card. After clutching the card in my hand my eyes quickly scanned the lettering with curiosity. They froze as I read the word “psychiatrist”. Immediately, my brain scattered about for an explanation. My emotions weld up like blisters getting ready to burst just thinking that someone would label me crazy. At first, I couldn’t utter a word, but my emotions were raw.

The silence was finally broken when I gazed into the doctor’s eyes and proudly uttered that I was not crazy and didn’t need to see a shrink. Holding back tears, I tossed the card down onto his desk and walked out of his office while muttering under my breath, “You have a lot of nerve”! With purpose in my step I began my crusade to find the root problem for my illness.

••••• The scenario above is all too common. Maybe you haven’t had the displeasure of being labelled, but you are still licking your wounds just the same. After visiting the doctor countless times and undergoing a multitude of testing your physician proudly announces that your test results are normal and there is nothing wrong with you. You begin receiving unsolicited advice from co-workers and family suggesting you are just tired and under stress. After all, they lovingly articulate how good you look. This fuels the fire all the more because in order for an individual to be sick in the eyes of others, the person must surely look the part! You have no cast on your arm to proclaim any broken bones, nor do you wear a scarf on your head to announce your series of chemotherapy treatments. The thought of all these reflective ramblings only press you further into an emotional slump. If you are like me, you are bellowing out to your family the need for a solution to all of your symptoms. In a desperate voice you scream out, “They (medical community) can’t leave me this way!”

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Have I exposed a raw nerve? Maybe your journey has been somewhat different than mine, but no less emotional. Perhaps you are still fighting the good fight, but literally on your last nerve. I want you to know you are not alone and give you comfort by saying you are not crazy! You may be jolted by bumpy waves, but you can ride out the storm.

Since finally being diagnosed in the early 90’s, improved research, in addition to the loud squawking from the likes of you and me, has placed our cause onto the Marquee. Many in the medical community have finally admitted that the pain and associated symptoms are real. The subject has been bandied about within the talk show circuit. The good news is that Fibromyalgia now has a face…yours and mine! Some of the biggest advocates are web sites and Facebook pages that play a fundamental role in offering information and support. Although you won’t be able to get replacement parts for your “damaged goods” by filling out a claim form, you will be able to connect to a support system who truly understands the emotional baggage you carry.

Could you be our next

?

We’re looking for men & women who would like to appear on the covers of the next 4 issues of LIVING WELL WITH FIBROMYALGIA? Send your photo/s & a short bio (see pg 4) by November 1st to contributions@fibromodem.com

This article may not stop your nerve damage, but I remain optimistic that it will provide hope and encouragement for you to press on.

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Want more happiness in your life? And who wouldn’t?

The first step may be to change your views about what happiness really is…

Myth 1: Either you have it or you don’t.

There’s evidence that suggests genetics contribute to about 50% of your happiness set point — the level of happiness that seems most normal for you.

“If you do the work,” Sonja Lyubomirsky, PhD, (author of The How of Happiness: A New Approach to Getting the Life You Want and professor of psychology at the University of California, Riverside) says, “research shows you can become happier, no matter what your set point is. You probably won’t go from a one to a 10, but you can become happier. It just takes commitment and effort as with any meaningful goal in life.”

Not only can you become happier, she says, but it gets easier over time. Work on nurturing relationships, writing in a gratitude journal, committing random acts of kindness, or developing a program of morning meditation or exercise.

Changes like these (proven methods for enhancing happiness) can become habits after a while, which means they eventually take less effort.

Myth 2: Happiness is a destination.

Many people think of happiness as a destination or acquisition – whether it’s a diagnosis, money, or a new medication. Things like these can contribute to happiness, but not as much as you might think - they account for only about 10% of your whole happiness picture.

If you’ve done the math, you now realize that about 40% of your happiness is in your hands. Lasting happiness has more to do with how you behave and think – things you control – than with many of life’s circumstances.

Happiness isn’t the emotional finish line in the race of life.

Happiness is not just an emotional flight of fancy. It’s beneficial for the long run, serving a real function in our lives. It’s a process and a resource.

Robert Biswas-Diener co-author of Happiness: Unlocking the Mysteries of Psychological Wealth.

Biswas-Diener says there’s a mountain of data showing that when people are happier, they become healthier and more curious, sociable, helpful, creative, and willing to try new things.

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Myth 3: You always adapt to your happiness set point.

Adaptation is one of the big obstacles to becoming happier. The new doctor, approval for Disability, friends’ support – all can bring a temporary boost but then recede into the background over time.

One reason, Lyubomirsky says, is that we evolved to pay more attention to novelty. For our ancestors, novelty signalled either danger or opportunity – a chance for a new mate or food, for example. We’re attuned to contrasts, not sameness. But that also means we readily adapt to positive experiences that happen to us.

“I argue that you can thwart adaptation, slow it down, or prevent it with active ways of thinking or behaving,” says Lyubomirsky, who, after moving to California, found herself adapting to her beautiful surroundings. To counteract this trend, she put effort into appreciating the view she saw when running on a path overlooking the ocean. She says she now savours that view every day, trying to see it “through the eyes of a tourist.”

Myth 4: Negative emotions always outweigh the positive ones.

For quite some time, research has indicated that negative emotions are more powerful than positive ones. For example, studies show that people don’t have equal reactions to winning $3 and losing $3 - the loss tends to have a stronger effect than the gain.

Negative emotions might edge out positive emotions in the moment because they’re telling you to find a problem and fix it. But positive emotions appear to win out over time because they let you build on what you have.

Positive emotions won’t protect you from feeling bad about things, nor should they. But over time, they can protect you from the consequences of negative emotions. This may not be true for people with depression or other serious disorders, although they do show benefits when positive emotions are added to conventional psychotherapy, Cohn notes.

Myth 5: Happiness is all about hedonism.

There’s more to happiness than racking up pleasurable experiences. In fact, helping others (the opposite of hedonism) may be the most direct route to happiness, notes Stephen G. Post, PhD, co-author of Why Good Things Happen to Good People: The Exciting New Research That Proves the Link Between Doing Good and Living a Longer, Healthier, Happier Life and professor of preventive medicine and director of the Center for Medical Humanities, Compassionate Care, and Bioethics at Stony Brook University in Stony Brook, N.Y. “When people help others through formal volunteering or generous actions, about half report feeling a ‘helper’s high,’ and 13% even experience alleviation of aches and pains,” says Post. “For most people, a pretty low threshold of activity practiced well makes a difference.” This might involve volunteering just one or two hours each week or doing five generous things weekly (activities that are above and beyond what you normally do).

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First documented in the 1990s, mood elevation from helping is associated with a release of serotonin, endorphins and oxytocin, a “compassion hormone” that reinforces even more helping behaviour, Post says.

A National Academy of Sciences study showed that simply thinking about contributing to a charity of choice activates a part of the brain called the mesolimbic pathway, the brain’s reward centre, which is associated with feelings of joy. However, face-to-face interactions seem to have a higher impact.

Myth 6: One size fits all.

I am

responsible for my own

HAPPINESS If you’re seeking a magic bullet or mystical elixir to enhance your happiness, you’re bound to be sorely disappointed. There is no “one size fits all” for happiness. Instead, there are many ways to boost your happiness. Here are options to try: 



Pick an activity that is meaningful to you - whether you choose an activity that promotes a sense of gratitude, connectedness, forgiveness, or optimism, you’ll be most successful if your choices are personally relevant to you.

Assess your strengths and develop practices that best use these gifts - Are you a good cook? Deliver a meal to a shut-in. A retired teacher? Consider tutoring a child.

The possibilities are limited only by your imagination.

And when it comes to happiness, maintaining your will (and acting on it) might just put a pleasurable, meaningful life well within reach.

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I’m a man with debilitating FMS/CFS. I know several other men who battle with this disease, and from what I’ve observed the hardest problem to deal with is the emotional fallout that comes with not being what we once were. We are men! We are warriors, slayers of dragons, openers of hard-to-open jars. But we aren’t “us” anymore. I can deal with the pain, I can cope with the fatigue, but conquering those mental demons was just too much for me.

For those hit hardest by FMS/CFS our lives are endured, not enjoyed. Not knowing when we will wake up to a good day or a bad day takes away any control we had. It renders scheduling impossible. Much of our time is now spent alone, spiralling into depression. We often isolate ourselves from people we know don’t understand us. Anxiety consumes many of us. The above compilation mentally crushes even the strongest of us.

As men we base much of our self-worth on our ability to provide materially for our families.

Without it we feel useless. We wonder if it would be easier on our loved ones if they no longer had to deal with the burden we feel we have become to them. We have been dealt a life sentence, yet committed no crime. It’s enough to make a clown cry.

Time to make some changes.

Here are some useful coping tools I’ve learned. Because of my disability I am home while my wife works. The solitude drove me nuts. Listening to the TV or radio helps me. So, I have the TV on from the time I wake up till my wife gets home. I don’t watch it; watching TV all day will worsen depression. Simply hearing people talking in the background as I go about my day eases the solitude.

Besides the pretend company, another therapy dear to my heart is my dog Buddy. As part of my transition to a life with frequent bouts of “alone time”, my wife and I decided to get a dog. However, just getting a dog can add to your burden instead of lessening it. Having a high-energy or disobedient dog inside the house with you all day can be very stressful! Therefore, it is important to choose a dog that fits your way of life, your activity level, and the space you have. It’s best to choose from a reputable breeder who will know the personalities of his/her dogs and help you pick the right one. I chose the most submissive dog since he was used to following humans. Most important, after a morning walk, Buddy is content to

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keep me company on the couch. If you are incapable of a walk, a smaller dog can often meet most of its exercise needs in the house and with some training time.

The benefits of being a dog owner come from the satisfaction of training it. Two books I recommend people read before getting a dog: The Culture Clash by Jean Donaldson and The Other End of the Leash by Patricia B. McConnell. These two books should get you up to speed on many of the mistakes people make when choosing, owning, and training a dog.

Training classes are also an excellent way to bond with your dog. Since one of the most successful rehabilitation programs for convicts has been dog rehabilitation therapy, why not use it in other forms of therapy. It has been shown to help convicts come to terms with what they have done, and experience a joy in their life they never had before. If this process of raising a dog can do that for violent offenders, imagine the impact it can have on you.

There is also no shame in asking for help; we are already dealing with more than we were intended to. Our ego shattered, we tend to project a stoic version of ourselves; we hide our anguish. Don’t do it. This results in a steady build-up of emotional residue, worsening our plight. Our system is physically overloaded in almost every way possible; add to that the burden of keeping up this façade and you have the makings of a breakdown of unholy proportions. Leading a double life catches up with everyone eventually. That is what you are doing. Don’t do it. You are damaging yourself further.

That’s not heroic, that’s stupid.

That is not to say you must talk about your problems with everyone; but you need to talk to someone. When I sold my business due to my condition, I was in a bad way. I ended up seeking help from a therapist. This was something I resisted for a long time. I didn’t want to be perceived as weak by yet another person. Also, I had read countless books on brain chemistry, positive thinking, and Cognitive Behavioral Therapy. I thought I already knew how to cope. But something was lacking; talking to someone about it.

On-going talk therapy has been extremely helpful. Having someone to talk to, even though he/she might not fully understand the depth of my symptoms is a medicine without equal.

My therapist has given me many new coping techniques and brought to my attention things that trigger my anxiety and depression. I highly recommend finding a therapist you feel comfortable with. You are wasting so much mental energy holding it in. What benefit exists from going it alone? The benefits of letting out the “real” you are infinite. One thing you probably haven’t lost is your sense of logic…apply it here.

Lastly I’d like to talk about your thinking patterns; this is where a therapist can be invaluable. Something called mindfulness is important. It involves being aware of your thoughts and altering them if need be. You can’t change reality. You can change your thoughts. We all have good days and bad days; you know this to be a fact. A string of bad days often plunges you further into depression. Be aware of the thoughts you are experiencing and work to either change, or reframe them.

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Reframing is altering your perception of a certain thought pattern. E.g. “This is my fifth day of feeling like garbage; I am useless.” Reshape that into “While I have had a string of bad days, I know that good ones will come shortly. When that time arrives I’m going to do _____.” Contemplate things you can do on your good days that will bring you some sort of happiness. Happiness is hard to capture for those suffering from FMS; so break it down into smaller parts. Think of the senses your “good day endeavor” will please. Live deeply in the anticipation. Immerse yourself in those moments when they come. Do not let them be ordinary; they are by definition extraordinary. Experience them fully. When they are gone, remember that they will be back. That is a fact; call it to mind when you need it. If on those good days you are overwhelmed with things to do, sacrifice at least one thing and set that time aside just for you.

Reframing is one technique, but mindfulness can be a total change. When those dark moments overtake you, change those thoughts. Reframing is altering your perception of certain thoughts. Changing is a complete transition away from those thoughts. If you are dwelling on something negative, turn on a radio to a favorite station. Concentrate on putting all other thoughts away and live in the music. All else is gone for now. Pay attention to the music, the lyrics, the rhythm, the message. I find it very helpful to think of my favorite songs and find performances of them on Youtube.com. A favorite song, or artist, watching the performance, seeing amazing covers of those songs by ordinary people. I can get lost for hours in a place that is totally distracting me from negative thought patterns. It even lasts for a while after, as I tend to keep singing the songs. It’s not important what you do to change your thoughts; it’s important to notice and alter them in a way that fits you. Even contemplating how you would change those thoughts is a beneficial escape.

Live for the good days. You will always have them; they are yours to keep. Concentrate on living IN those good days. Pass the time of the bad days as worthwhile and happy as you can with some of the above techniques. A therapist can provide you with many more coping strategies. You are not useless; you are limited. There is only one “you” in the world. You have something to offer it, and there are people needing it. Don’t underestimate the effect you can have because of your limitations. It is often the strength displayed by the weakest of us that is most admired by others. We just have a different dragon to slay.

Are you Fibro?

a

man

with

Do you want to talk to other men with Fibro – about how they cope every day, what helps them, etc?

Join the closed, private group For Fibro Men 16

FM PROFILE If there is one person who is extremely passionate about Fibromyalgia awareness, it is Amy Mullholand of The Fibro Frog.

In her off time, Amy loves to spend time with her children & grandchildren. She frequently enjoys the company of her two dogs, who even check on her when she is feeling rundown. Amy’s son is an MMA cage fighter, and she enjoys attending his matches.

Photography is her passion, although due to the pain it causes, she has had to cut down on it.

What was conceived out of pure frustration, her page has grown to something incredible: a place of support, love and advocacy.

introducing...The Fibro Frog MOTIVATION I started The Fibro Frog, out of pure frustration. I had finally accepted that I had something wrong with me, something that didn’t have a cure. I was overcome with the thought of living e-v-e-r-y day of the rest of my life in pain: real, debilitating pain, too …not just an “Oh, I stood on my feet too long today so my feet and back are killing me” type of pain; pain that feels as if you have the flu, e-v-e-r-y single day of your life - all the way down to the sore skin when it’s touched, along with muscle cramps, Charley horses throughout my legs and stomach, and the horrible fatigue. It really was hard for me.

I thought the blog would give me a place to vent. When it began, it truly was my own venting corner. It quickly started getting followers though - people were saying “hey, you’re not alone”. It only took me a month or so to figure out the direction I wanted The Fibro Frog to go in. I wanted to keep making connections so that no one else would ever have to feel alone dealing with this monster, AND I wanted to be a voice for all of us.

There are just so many myths and misconceptions about not only Fibromyalgia, but any chronic pain/invisible illness. It’s no wonder that we’re treated so rudely, and people think we’re just “attention seekers” or “lazy”. My goal is to not only validate the feelings of any one who posts on The Fibro Frog, but to start educating the public. I always say that education is everything. There’s been so much research that proves beyond a doubt that we aren’t faking and that FM is truly a horrible, life-changing illness.

Without education about FM, there won’t be change (as in the way people think about the illness) and without change there won’t be more research. Without more research, there won’t be a cure!

I’m a huge advocate for all types of chronic pain sufferers. I’ve put together a seminar and webinar, full of useful information, for both people who suffer with a chronic pain illness, and

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also those who do not suffer: friends, family, community, healthcare professionals, etc. I’m working hard to try and raise the funds needed for me to start renting hotel conference rooms and advertising, so that I can start traveling across the U.S. helping to educate and advocate.

ADVICE The best advice I can give to anyone is: Pace Yourself. You hear people say that a lot, but it really is so very crucial. If you don’t pace yourself, you will pay dearly for the next few days (at the very least), and worst case scenario is that you’ll throw yourself into a flare.

Flares can last from days to months.

The advice I have to follow is to not be so hard on yourself. If you can’t finish the laundry in one day, then take 2 to do it. If you can’t wash all of the dishes at once, then don’t. I have to clean off and stack the dishes; then I sit for 10-15 minutes; then, I wash the glasses; then I sit for 10-15 minutes; and on and on until the job is done. If it takes you 2 hours to get them done when it’s normally a 15 minute job, then so be it. Don’t beat yourself up or feel bad about it.

Finally, if you encounter a DHAC (a person who Doesn’t Have A Clue) and they say something stupid to you, instead of getting angry at them, take that opportunity to turn the conversation around and educate them.

Always remember, you’re never alone. There are others out there that feel like you do.

Everyone’s pain is equal and deserves the same validation.

Everyone’s pain matters.

MESSAGE Please, whatever you do, educate and advocate every chance you get! If you are part of a church, business, community, or organization that could benefit from my seminar, please let me know. Also, I highly encourage all of you to register for my webinar, and crowd your family and friends around so that YOU can get some stats that will really open your eyes and get some tips, tricks, and resources to help you through your chronic pain/fatigue illness and to help your family/friends to understand what a day in YOUR life is really like.

Amy decided to create a webinar, all about educating others about living life with chronic pain, called “Living with Chronic Pain – A Patients View”. Amy describes her amazing webinar as “not geared just for the person that’s suffering with a chronic pain/fatigue illness, but also to their friends and family, and especially to community members and those in the medical field, to try and help them gain a little more insight and understanding into what a day in the life of a chronic pain sufferer is truly like.”

I’ll advocate for a cure or, at the very least, a solid, concrete, universal treatment plan that will work for everyone.

Gentle butterfly hugs from me, to all of you.

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The Fat Fox has written this article with the Health at Every Size concept in mind. Health at Every Size is based on the simple premise that the best way to improve health is to honor your body. It supports people in adopting health habits for the sake of health and well-being (rather than weight control).

I have been thinking a lot lately about how fat stigma and fat shame is often linked to concerns for people’s health, specifically about the negative impact that our fat-hating culture has on my ability to take care of my health. This is a very intimate topic for me because I am a fat person with a chronic illness. This negative impact seems oh-socontrary to its often referenced concern for ‘health’.

According to the National Fibromyalgia and Chronic Pain Association, fibromyalgia is: “A central nervous system illness that is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue, and can be accompanied by psychological distress that comes with all chronic illness.

For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities” I was fat before I was diagnosed with FM. I’m often asked whether my fat affects my FM. I always give the same response: no. Despite the fact that I am 5 foot 9 inches tall and weigh 370lbs, without FM I am an active, happy, and energetic fatty. This is still evidenced by the fact that when my pain is sufficiently medicated, I can still participate in most activities enjoyed by people half my size.

I hate overweight, because it implies that there’s a weight standard I should be adhering to.

Camryn Manheim However, FM pain is difficult to treat. Despite the use of opiates, I still average 6 or 7 on a 1-10 pain scale most days. Daily pain is exhausting. It makes sleeping difficult. Most days, a shower is a difficult feat to manage that requires several hours of recuperation afterward.

Going to the grocery store requires at least a day to recover.

What does this have to do with fat shame? The difficulties that I have with FM often manifest as stereotypically fat behavior. I walk slowly, I need frequent breaks, and I am exhausted by very little activity. Sometimes brushing my teeth results in a searing, burning pain in my shoulder that reminds me of the muscle fatigue one gets when lifting weights.

When I go to the FM message boards, the Mayo Clinic website, or any other place where I should be able to get help and find comfort, I am inevitably met with weight loss discussion.

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This baffles me. We are dealing with a central nervous system issue. Yet, many people feel that FM can be helped by weight loss. Even doctors! The idea behind this is that you won’t hurt as much if you don’t have as much mass to haul around.

There is much discussion about what to eat, what not to eat, how to work out, etc. This can be an extremely daunting concept when you are in a physical position where lifting your arm to wash your hair or brush your teeth results in exhaustion and agony.

So how does this affect my ability to take care of myself? The constant drumming of weight loss, and diet, and exercise completely ignores my reality. I think to myself – “well, if they got better because they lost 15 lbs, maybe that means I would?” Or when the voice creeps into your head that tells you that FM is made up and it’s just an excuse to be a fat lazy ass. I end up lying in bed at night thinking “what if I’m really not sick? What if I am just really out of shape?” This question is inevitably followed by the reminder that I have brushed my teeth religiously 3 times a day since I was 11 and got braces. Exactly when did my tooth-brushing muscles atrophy from lack of use?

And there, my friends, is the crazy making bit. Even when a person is acknowledged to have a syndrome that causes unrelenting pain and affects the central nervous system, they are still encouraged and cajoled about weight loss. Weight loss is the answer! It’s the panacea! It’s the key! This is extolled by both doctor and patient alike.

FM is not a uniform disease. It does affect people differently. There are people within the FM range who do benefit from exercise. There are those of us also, who are completely intolerant to exercise. However, this last category is hardly ever spoken of. After all, we don’t want people getting the idea that they don’t need to exercise!! AmIRight?!

It is difficult to live in a culture that is obsessed with weight loss when you inhabit a body that visibly represents everything that is found to be abhorrent. It is difficult to come up with ways to take care of yourself, when there is a never ending chorus of voices saying that your fat ass is the only problem. I find that when I get enough pain medication, and I feel a little more ‘normal’, my first thought is always that I just need to pull up my boot straps and show no mercy! Lose that weight and get that body in shape. That I’m a weak, fat, lazy bum who is just out of shape from sitting on my ass. These thoughts are reinforced by the antifat rhetoric that is all around us, day in and day out.

That is how anti-fat rhetoric is damaging to my health. It is crazy making. It seeps into my brain and tells me lies about my body. How can I be convinced to be gentle, to take care of myself, to move in ways that are good for me, when the messages around me are that my body is a direct display of my failure? The assumption that my FM is BECAUSE I am fat, not that perhaps, I got a bit fatter (I started out fat) because of the limitations of my FM. There is a constant flow of messages to do things that are hurtful to me, in the name of ‘health’. I am told that if I treat myself with care and tenderness that I am hurting myself. I am making myself worse. I will die from my fat unless I go for a scorched earth regimen to rid myself of it. How can that possibly be ‘good for my health’?

Want to know more about Health at Every Size? Check out HAES, the National Association to Advance Fat Acceptance and the Association for Size Diversity and Health.

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by Melissa Swanson I was elated when I heard the topic for this issue would be emotions. Isn’t that why we join online support groups, start Facebook pages and write our own blogs - to share how we feel.

Instead of writing about my own feelings, I decided I wanted to add a twist to the article.

Every day, in online support groups, I read about someone who is frustrated with a doctor for not believing them or a family member, friend or co-worker for “not understanding” how they feel.

Instead of discussing our feelings: what about the feelings of those who live and work with us, how do they feel?

I wondered if those who live and work with us know all of the syndromes/diseases that we struggle with on a daily basis and what medications, supplements and treatments we are using to help fight the symptoms. I surveyed the family members, friends and co-workers of Fibromites, asking them questions about what they know about the Fibromite in their life and how they feel about living/working with someone with Fibromyalgia and it’s evil sidekicks.

Melissa’s Questionnaire 1.

What is your relationship to the person diagnosed with Fibromyalgia?

2. How long has she/he been dealing with symptoms/diagnosis?

3. How did you feel during the time before they were diagnosed?

4. Has it changed your relationship? If so, how?

Eg: Personally, Home Life, Family Life, Work Life 5. Do you know all of the syndromes/diseases that your Fibromite has been diagnosed?

6. Do you know what medications they are currently taking?

7. Have you joined any groups or looked up any activities to help?

8. Do you get tired of hearing about the pain/tiredness etc?

9. How does this syndrome affect you?

10. Please feel free to write anything else regarding how you feel about how this syndrome has changed your life.

We are always working towards education and awareness and yet each time I received a completed survey, I was surprised. It didn’t matter what the relationship was - all but a few had no idea what syndromes/diseases that their Fibromite had been diagnosed with; and when asked about the medications that their Fibromite was taking, the majority of answers were “a lot”. Even those closest to us didn’t seem to know the answers and had not taken the opportunity to join support groups or done research to better understand.

So, how do our family/friends feel?

Do they get tired of hearing about the pain/tiredness, etc?

The responses were mixed: there were a few that said no “because I know he/she needs to talk about it;” while others replied that they “hate to admit it but sometimes they get tired of hearing about it” or “Oh sure you sometimes get tired of hearing about the pain”.

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They expressed being frustrated with not knowing what to do to help - it makes planning things difficult often having to be cancelled. In my case, my husband has pointed out that I have stopped doing as many things with my friends. He said that I back out and cancel way too much.

Those of who are still working jobs outside our home struggle all the time with controlling the pain, the fog and even keeping our eyes open from sheer exhaustion.

So, what about those who have to work with us? Often those with Fibromyalgia start missing work due to our many doctor appointments, or the pain/fog being so strong. We often read about those having problems with their bosses or co-workers accepting their limitations. In most cases our work still has to be done and can’t wait for us to return.

Someone has to do it!

I expected to hear resentment or even anger from co-workers for having to do our work or for making their work behind/late, while we are out sick.

Surprisingly, that wasn’t the case. Co-workers expressed feeling bad that they didn’t know enough about our illnesses and that they wished they knew more ways to help. They miss who we used to be…“the outgoing social person”.

When asked how does the Fibromite’s syndrome affect you, the co-workers replied that it doesn’t affect them at all while our family members admit they are worried, angry, frustrated and sad.

It affects me in that I feel like my sister has been stolen from me

It has changed the dynamics of our whole family

I feel helpless & hopeless It’s affected all the relationships in her life

Her husband is losing patience, her kids do not respect her, some of her sisters have drifted away our mom is constantly worried about her

The person with the disease has to be sure the other person is not neglected

Intimate relations stopped totally the last 16 years of marriage

No parent wants to see this It can be depressing for both persons.

Partners have to learn to cope with this disease

I am not really sure what I was hoping to hear from those completing the surveys but what I did feel was disappointment. I posted or personally asked over 6000 people to ask their family/co-workers to complete the questionnaire. The response was less than 0.25%. Even those in my own family either refused to do it or just did not answer the questions.

I was seeking complete honesty. In order to help our family, friends and co-workers know that their answers were private, that they would not want to hurt their Fibromite’s feelings or start arguments, I gave out my email address so they could send it directly to me and no one would ever know their answers.

It can’t be helped. If you have Fibromyalgia and any of it’s evil sidekicks it is going to affect your home and work life.

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In my work life, I feel frustration over being someone who was once an accurate, dependable, multi-tasker and is now, on foggy days, slower, less accurate, and often need to ask for assistance. Multitasking is definitely not as easy.

In my home life, I feel like half a person.

There are many times when I have had to change plans due to sheer exhaustion or pain. It has changed my family life: my family have had to take over doing things that I normally would get done, I have forgotten things or dates, the house is not as clean, the weeds are growing more than my flowers; and we have had to change our travel plans more than once.

I struggle with depression. Internally, I fight between giving up and being the Warrior I know I am.

After proof-reading the last few paragraphs, you might be surprised to hear about my other feelings or emotions.

Yes, Fibromyalgia is awful and I would love for it to disappear from my life.

However, approximately 3 years ago, I decided to try my best to view the positive things in life. Fibromyalgia h as given me strength. I have tried things I would never have tried before, proving to myself and others that I will not let it beat me. I have formed wonderful friendships with people around the world. Besides still being active in my daughter’s life, I am doing two things that make me feel wonderful: I am writing and training our recently acquired puppy. I am doing both of those things to help me and others feel better.

It is my hope that you will share this article with your friends and family. Perhaps even use my questions as a tool to open up dialogue about what is often kept quiet.

Melissa runs a Facebook page called Fibro Warriors ~ Living Life and, if you enjoy her writing, please visit her blog: This is My Life ~ Surviving Fibromyalgia

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There are 5 stages that make up the framework that allows us to live with loss: denial, anger, bargaining, depression and acceptance.

They are tools to help us frame and identify what we may be feeling.

They can also be applied to our grief over the loss of our ‘old’ selves.

These tools are not stations on a train line. Not everyone goes through all of them or in a prescribed order. Have you been to any of these places? Stuck at one?

Denial This stage of grieving helps us to survive the loss. In this stage, the world becomes meaningless and overwhelming. This is the time we sit on the couch, in pyjamas, until bedtime. Life makes no sense. We are in a state of shock, denial, numbed to everything. Denial and shock help us to cope and make survival possible. Denial helps us to pace our feelings of grief. It is nature’s way of letting in only as much as we can handle.

As you accept the reality of loss and start to ask yourself questions, you are unknowingly beginning the healing process. You are becoming stronger, and the denial is beginning to fade.

But as you proceed, all the feelings you were denying begin to surface…

Anger Anger is a necessary stage of the healing process. Be willing to embrace your anger, even though it might seem endless. The more you truly feel it, the more it will begin to dissipate and the more you will heal. There are many other emotions under the anger and you will get to them (too soon), but anger is the emotion we are most used to managing. The truth is anger has no limits. It can extend not only to your friends, the doctor, your family, yourself, but also to God. Underneath anger is pain...YOUR pain. It is natural to feel deserted and abandoned. At first, grief can be like being lost at sea: without moorings to anything. Anger is strength, an

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anchor, giving temporary structure to the nothingness of loss. Then you get angry at someone, maybe a doctor who can’t help, maybe a person who isn’t around, maybe a person who acts differently around you. Suddenly you have a structure – your anger towards them.

The anger becomes a bridge over the open sea, a connection from you to them. It is something to hold onto; and a connection made from the strength of anger feels better than nothing.

Bargaining Please God, I will quit smoking again if you let me go back to ‘normal’.

What if I devote my life to helping others?

Then can I wake up and pretend this has all been a bad dream?

After a loss, bargaining may take the form of a temporary truce. We become lost in a maze of ‘If only...s’ or ‘What if...s.’ We want life returned to what it was; we want to go back in time...if only, if only, if only.

Guilt is often bargainings’s companion. The ‘if onlys’ cause us to find fault in ourselves and what we could have done differently. We may even bargain with the pain. We will do anything not to feel the pain. We remain in the past, trying to negotiate our way out of the hurt.

People often think of the stages as lasting weeks or months. They forget that the stages are responses to feelings that can last for minutes or hours as we flip in and out of one and then another. We do not enter and leave each individual stage like getting on and off a train. We may feel one, then another and back again to the first one.

Depression Empty feelings present themselves, and grief enters our lives on a deeper level, deeper than we ever imagined.

This depressive stage feels as though it will last forever. It’s important to understand that this depression is not necessarily a sign of mental illness.

It is the appropriate response to a great loss. We withdraw from life, left in a fog of intense sadness, wondering, perhaps, if there is any point in going on alone? Why go on at all?

Depression after a loss is too often seen as unnatural: a state to be fixed, something to snap out of. the first question to ask yourself is whether or not the situation you’re in is actually depressing. Loss is a very depressing situation, and depression is a normal and appropriate response. If grief is a process of healing, then depression is one of the many necessary steps along the way.

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Acceptance Acceptance is often confused with the notion of being ‘OK’ with what has happened. This is not the case. Most people don’t ever feel OK or all right about loss. This stage is about accepting reality and recognising that this new reality is the permanent reality.

We will never like this reality or make it OK, but eventually we accept it. We learn to live with it. It is the new norm with which we must live. We must try to live now in a world where WE are missing. In resisting this new norm, at first many people want to maintain life as it was. In time, through bits and pieces of acceptance, however, we see that we cannot maintain the past intact. It has been forever changed and we must readjust. We must learn to reorganise roles, re-assign them to others or leave them out completely.

Finding acceptance may be just having more good days than bad ones. As we begin to live again and enjoy our life, we often feel that in doing so, we are betraying our old selves. We can never replace what has been lost, but we can make new connections, new meaningful relationships, and new inter-dependencies. Instead of denying our There is no right way to feelings, we listen to our needs; we move, we change, we grow, we grieve and everyone has evolve. We begin to live again, but we cannot do so until we have different ways of dealing given grief its time.

with their feelings

At times, people in grief will often report more stages. Just remember your grief is as unique as you are.

•••••

Fibromyalgia and Me Hoping against hope Need somebody To hold onto.

To survive Today Again Survive it Got to ride it Wave after wave Pain over takes me Wave after wave Got to ride it Survive it Again Misery Is my pain Need to hide it I can’t let you see Wear my mask, smile It’s not so easy being me

by Melanie Woodruff

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When was the last time you laughed until your side hurt from laughing...and not because of your typical aches and pains?

Laughter is a natural medicine. It lifts our spirits and makes us feel happy. Laughter is a contagious emotion. It can bring people together. It can help us feel more alive and empowered.

I have happy moments and time with friends in which I feel joyful, but I also must admit that I laugh much less than I once did. Illness has a way of aging us much too soon. It makes us too serious at times, because we have to think about how everything will affect our body.

Laughter therapy, also called humour therapy, is the use of humour to promote overall health and wellness. It aims to use the natural physiological process of laughter to help relieve physical or emotional stresses or discomfort.

Laughter has been shown to cause multiple physiological changes that may be beneficial to those of us with fibromyalgia. In a recent report, alternative health experts today tout laughter therapy as a mode of healing any disease from a mild fever to even cancer. It has been scientifically proven that laughter is both preventive and therapeutic. Although laughter therapy has not been studied specifically for FM, researchers are uncovering more about laughter in general and in painful conditions such as cancer and rheumatoid arthritis.

Benefits of Laughter Laughter therapy has been described as great way to relax and de-stress terminally ill patients and those suffering from chronic illnesses. Laughter Yoga is one such exercise that works on changing the physical, emotional and mental state simultaneously thereby bringing a positive outlook towards life and circumstances. A good laugh exercises the lungs and circulatory system and increases the amount of oxygen in the blood. The huge therapeutic value of laughter can turn your life and health around. According to some studies, laughter therapy may provide physical benefits, such as helping to:

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        

Boost the immune system and circulatory system Enhance oxygen intake Stimulate the heart and lungs Relax muscles throughout the body Trigger the release of endorphins (the body’s natural painkillers) Ease digestion/soothes stomach aches Relieve pain Balance blood pressure Improve mental functions (i.e., alertness, memory, creativity)

Laughter therapy may also help to:       

Improve overall attitude Reduce stress/tension Promote relaxation Improve sleep Enhance quality of life Strengthen social bonds and relationships Produce a general sense of well-being

Great side effects for something that is free and readily available without a prescription!

Many of the things in that list are either known or believed to be involved, to varying degrees, in many FM cases.

Most illnesses today are stress related and chronic stress attacks the immune system and makes us vulnerable to infections, virus attack and cancer. In fact, this is a major motive for people taking to Laughter therapy.

People practicing Laughter Therapy regularly report amazing improvement in their health as well as a more positive mental attitude and higher energy levels. The first thing participants say is that they don’t fall sick very often; the frequency of normal cold and flu reduces or even disappears. There are daily reports of partial or total cure of most stress-related illnesses like hypertension, heart disease, depression, asthma, arthritis, allergies, stiff muscles and more. While this sounds fantastic, it all makes perfect sense, as laughter is nature’s best cure for stress.

Scientific research by Dr Lee Berk from Loma Linda University, California proved that laughter strengthens the immune system by increasing the number of natural killer cells and increase in the antibodies. The immune system is the master-key of health and if it weakens one is exposed to constant infection and sickness.

Laughter Therapy for Reducing Stress Stress and depression are two major components of ill health. Most health benefits people get are because they are able to manage physical, mental and emotional stress with Laughter Therapy exercises.

Once the stress levels are down, the immune system becomes stronger automatically.

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Laughter Therapy as an Exercise Dr. William Fry, a research scientist from Stanford University scientifically proved that 10 minutes of healthy laughter is equal to 30 minutes on the rowing machine. Laughter is the best cardio workout. As an exercise it has similar benefits as compared to any other aerobic activities like jogging, dining swimming and cycling.

Laughter Therapy and Role Of Oxygen Dr Otto Warburg, German scientist and Nobel Laureate said that the main reason we fall sick is because there is lack of oxygen in the body cells.

Laughter brings more oxygen to the body and brain. A good supply of oxygen is the key for maintaining good health as well as healing a variety of illnesses.

Laughter Therapy for Depression Depression is the number one sickness in the world and millions of dollars are spent on producing antidepressant drugs.

Laughter therapy is extremely therapeutic for depression as it helps to release certain neurotransmitters from the brain cells as well as help people to stay connected and share their feelings and emotions.

Laughter Therapy for Mental Health A major causal factor of many illnesses is a person's inability to express their feelings and emotions. People are afraid of reactions and conflict. As a result they suppress and hold their emotions which ultimately affect the immune system adversely leading to a variety of sickness. Laughter therapy is a cathartic exercise which helps people release their blocked emotions in a non-violent way and makes them emotionally balanced.

Bangalore research indicates that laughter also helps to increase positive emotions and decrease the negative ones thereby promoting a healthy life.

Possible Drawbacks of Laughter (did you ever think you’d hear that?)

Some people with fibro say that laughter can trigger post-exertional malaise - a major upswing in symptom severity after exertion. A long, hard laugh could lead to increased pain, especially if the muscles involved are deconditioned. However, this tendency may be countered by the endorphin release and other changes that are similar to the effects of exercise.

A rare side effect of laughter is brief episodes of syncope (fainting), likely due to laughterinduced changes in the autonomic nervous system leading to reduced blood flow to the brain. It's unknown whether the autonomic dysregulation and blood-flow abnormalities of FM could increase this risk.

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Emotional pain can be more excruciating than physical pain. Having gone through a very difficult time, I have realized that the pain in my body is a welcome change to the one in my heart and mind. But what kind of toll can the stress of emotional upset take on the body?

When you are stressed out or very upset, the body goes into “fight or flight” mode, pumping adrenaline, cortisol & increased blood to the muscles in expectation of what the mind perceives as danger. This is a temporary response, but if the stress is ongoing, the process continues to repeat itself over & over. The result of this constant “fight or flight” is an imbalance in the nervous system. This imbalance can lead to:             

Muscle tension Anxiety Depression Insomnia Headaches Gastrointestinal problems Respiratory problems Lowered immune system Increased pain in pre-existing condition Hormonal imbalances Decreased liver function Weight loss/gain And more…

So, for someone in chronic pain with a biological illness, this means that already painful conditions can become worse.

There are numerous techniques for reducing stress, such as meditation, medication, hypnosis, therapy, etc. There are thousands of websites dedicated to

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Prior to Fibromyalgia, Tracy was (is) a Licensed Social Worker. She also has a Bachelor’s Degree in Communications and an Associate’s Degree in Liberal Arts. With her wonderful black lab mixed dog, she is a huge advocate of pet therapy.

Tracy is also following her childhood passion, she is currently taking classes for acting.

stress reduction, but what happens when real life trumps the self-help websites?

When the stress is greater than the ability to cope? What happens when true emotional pain cannot be avoided?

Most of the time, if you are going through a stressful time in life, you have no choice but to fight through it. Stress is unavoidable & when it becomes too great, the only thing that can be done is to grit your teeth & push your way though. The most important thing is to stay as active & healthy as possible & to try & maintain some sense of “normalcy.” For me that includes my physical therapy & as many walks as my body can handle. By staying active you can try to burn off all that excess adrenaline that continues coursing through your body.

Living with physical illness, I understand that stress levels are already high, what with chronic pain, doctor visits, medication issues & insurance companies that are trying to give us heart attacks with every EOB, denial & appeal request. I understand that our bodies are already “under attack” on a daily basis. So, for anyone dealing with additional emotional stress (with chronic pain), I feel for you.

We are all fighters, that’s why we are here reading, writing & supporting each other, so keep the boxing gloves on & square your shoulders…we will eventually come out stronger & braver (I hope!).

Tracy’s blog Oh What a Pain in the... is an accredited member of FCK THE blog directory for people about & with Fibromyalgia.

There's a bunch of people just like me I now find them real easy to see But they lay low like lepers and hide In fact they should stand united with pride We may all not be in a wheelchair Thats discrimination and not fair Some of us don't shout it out loud Well why not? Shout it and be proud!!

There are sooo many disabilities Lupus, fibromyalgia,CFS and even M.E What ? You never heard of any of these Well its because they are an invisible disease So many sufferers are not ever seen If they're not in a wheelchair then you aint going to believe Well wash your mouth out and open your ears These people lives life with pain and tears Told we are fakes and doin it for the dough Well trust me there's more on the dole Just cos you can't see what goes on inside It doesn't mean that we have anything to hide We the disabled are not gonna hide We are gonna stand together with pride We the disabled are gonna shout out loud And united together we are gonna stand proud For our illnesses may be invisible thats true But that doesn't mean we should be too So all the people all worldwide Watch as we disabled stand united with pride

Micky Cocker has been writing chronic illness poems for over a year. This is how she copes with her conditions.

Crying to be Free, Fibromyalgia and M.E is an e-book of her poems. 10% of proceeds will go to M.E research and 10% to Fibromyalgia Research.

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Fibromyalgia Awareness Wish

1 2 3 4 5

Normally, I choose 5 items that I wish I had (no matter the cost) to appear on this WISH LIST.

What 5 things would you wish for right now?

Tell me (with links to a picture and price) and you could be the final word in

LIVING WELL with FIBROMYALGIA

Send your list to: contributions@fibromodem.com