The Dance of Life...

There is an art to living with ME/CFS. It is like dancing with a special partner - one whose needs must be understood and embraced. It requires the ultimate in adaptability, cooperation, flexibility and teamwork.

When you merge with the flow of the dance, your life will change. You will see things from a new perspective. And if you are lucky, you may begin to glimpse and appreciate the grace and beauty of your partner. You can then begin to be thankful for the insights and wisdom that they bring to your life.

In this dance, your partner is ME/CFS.

For some the dance may last a short time, for others it may last a lifetime.

However long your journey together, the key to your happiness is to learn to accept and love......"The Slow Dancer" within.

The following thoughts, images, music, humour, meditations and perspectives can help you do just that.

See Yourself in a New Light!



A STORY by Rachel Naomi Remen

As a physician I had a man come into my practice with bone cancer. His leg was removed at the hip to save his life.

He was twenty-four years old when I started working with him and he was a very angry man with a lot of bitterness. He felt a deep sense of injustice and a very deep hatred for all well people, because it seemed so unfair to him that he had suffered this terrible loss so early in life.


I worked with this man through his grief and rage and pain using painting, imagery, and deep psychotherapy. After working with him for more than two years there came a profound shift. He began “coming out of himself”. Later he started to visit other people who had suffered severe physical losses and he would tell me the most wonderful stories about these visits.

Once he visited a young woman who was almost his own age. It was a hot day in Palo Alto and he was in running shorts so his artificial leg showed when he came into her hospital room. The woman was so depressed about the loss of both her breasts that she wouldn’t even look at him, wouldn’t pay attention to him. The nurses had left her radio playing, probably in order to cheer her up. So, desperate to get her attention, he unstrapped his leg and began dancing around the room on one leg, snapping his fingers to the music. She looked at him in amazement and then burst out laughing and said, “Man, if you can dance, I can sing.”

It was a year following this that we sat down to review our work together. He talked about what was significant to him and then I shared what was significant in our process. As we were reviewing our two years of work together, I opened his file and there discovered several drawings he had made early on. I handed them to him. He looked at them and said, “Oh, look at this.” He showed me one of his earliest drawings. I had suggested to him that he draw a picture of his body. He had drawn a picture of a vase, and running through the vase was a deep black crack. This was the image of his body and he had taken a black crayon and had drawn the crack over and over again. He was grinding his teeth with rage at the time. It was very, very painful because it seemed to him that this vase could never function as a vase again. It could never hold water.

Now, several years later, he came to this picture and looked at it and said, “Oh, this one isn’t finished.” And I said, extending the box of crayons, “Why don’t you finish it?” He picked a yellow crayon and putting his finger on the crack he said...

“You see, here - where it is broken - this is where the light comes through.”

And with the yellow crayon he drew light streaming through the crack in his body.

We can grow strong at the broken places.

RACHEL'S WEBSITE:
http://www.rachelremen.com/

Cloud Meditation

Some Helpful Strategies


Keep an energy diary.
This can serve as a guide for what limits you should set on your activities and how to plan your day according to how your energy level changes throughout the day.

Confront discouraging thoughts. This will help you move from the idea that “I'm not strong enough” to the idea that “I will find evidence to show that I can control this illness.”

Learn to be flexible. This can help you adapt when your energy levels vary from their usual pattern.

Set limits. Many people with CFS need to learn how to pace themselves to avoid over-exercising and bringing back their fatigue.

Prioritize and delegate tasks. You can identify jobs or activities that are more important for you to perform and assign family and friends to perform others.

Accept relapses. It’s easy to do too much too soon and it’s important to accept what happens when you do that, and then move on.

Choose to be...



"Health is identical with authentic power. It is the alignment of the personality with the soul. The soul is that part of you that reaches for harmony, cooperation, and reverence for life.

An authentically empowered human is one who is living a meaningful, joyful, gratitude-filled life.

Consider someone in her midthirties who has a healthy body, runs eight miles a day, and with every quantitative assessment can prove that she is healthy. Yet she is miserable, and no one wants to be near her.

Contrast her with someone who has a physical body that is decaying of AIDS yet who is radiant, knows why he is alive, and is living his life gloriously. Everyone wants to be with him.

Who is healthy and who is ill?

From the perception of sacred medicine, the individual whose body is dysfunctional but whose life is filled with meaning is more healthy than the one who can run a marathon but who lives in rage and sees herself as a victim."

From -
http://www.seatofthesoul.com/interviews.html

Bathe Yourself in Beautiful Song



simple - k.d.lang

flawless light in a darkening air
alone...and shining there
love will not elude you
love is simple

i worship this tenacity
and the beautiful struggle we're in
love will not elude us
love is simple

be sure to know that
all in love
is ours
and love, as a philosophy
is simple

i am calm in oblivion
calm, as i ever have been
love will not elude me
love is simple

be sure to know that
all in love
is ours...
is ours...
that all in love
is ours
and love, as philosophy
is simple...
and ours...

Relaxation Video

Ask For An Unusual Gift This Christmas!

Just because you have CFS doesn't mean you can't have a laugh! The sillier the better!...

A Tranquil Garden


Take time to appreciate the simple things in life. Visit your local garden. If you like, take a book, a flask of tea, and a sandwich or two. Just sit and enjoy the peace and tranquility of nature. Let yourself feel the warmth of the sun, the gentleness of the breeze as it massages your skin. Relax into who you are. Only when you are calm and at peace can your spirit begin to dance.

Some Factual Information About CFS

The following posts provide some important information about CFS.

You may like to share this information with others.

It will help make them more aware of the nature of CFS and the impact it can have on your life.

U.S. Government CFS Awareness Campaign Video

This material for this video was provided by the U.S. Department of Health and Human Services - Centers for Disease Control and Prevention, for the the 2006 CFS Awareness Campaign.

http://www.cdc.gov/cfs/

The Sleepydust ME/CFS Online Video

For the friends and family of those living with ME/CFS [Myalgic Encephalomyelitis / Chronic Fatigue Syndrome / Post Viral Fatigue Syndrome].

Please help to educate people about this illness by forwarding this video on to as many people as you know.

Together we can make a difference.

This is the link to the original video and Sleepdust site...

http://www.sleepydust.net/me-cfs-chronic-fatigue-syndrome-video.html

CFS Symptoms

________________________________________

This information is taken from:

Centers for Disease Control and Prevention
U.S. Department of Health and Human Services
Website:
http://www.cdc.gov/cfs/
________________________________________

Introduction

Chronic fatigue syndrome shares symptoms with many other disorders. Fatigue, for instance, is found in hundreds of illnesses, and 10% to 25% of all patients who visit general practitioners complain of prolonged fatigue. The nature of the symptoms, however, can help clinicians differentiate CFS from other illnesses.


Primary Symptoms

As the name chronic fatigue syndrome suggests, this illness is accompanied by fatigue. However, it's not the kind of fatigue patients experience after a particularly busy day or week, after a sleepless night or after a stressful event. It's a severe, incapacitating fatigue that isn't improved by bed rest and that may be exacerbated by physical or mental activity. It's an all-encompassing fatigue that results in a dramatic decline in both activity level and stamina.

People with CFS function at a significantly lower level of activity than they were capable of prior to becoming ill. The illness results in a substantial reduction in occupational, personal, social or educational activities.

A CFS diagnosis should be considered in patients who present with six months or more of unexplained fatigue accompanied by other characteristic symptoms.

These symptoms include:

cognitive dysfunction, including impaired memory or concentration

postexertional malaise lasting more than 24 hours (exhaustion and
increased symptoms) following physical or mental exercise

unrefreshing sleep


joint pain (without redness or swelling)


persistent muscle pain


headaches of a new type or severity


tender cervical or axillary lymph nodes


sore throat



Other Common Symptoms

In addition to the eight primary defining symptoms of CFS, a number of other symptoms have been reported by some CFS patients. The frequency of occurrence of these symptoms varies among patients. These symptoms include:

irritable bowel, abdominal pain, nausea, diarrhea or bloating

chills and night sweats


brain fog


chest pain


shortness of breath


chronic cough


visual disturbances (blurring, sensitivity to light, eye pain or dry eyes)

allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise


difficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting)


psychological problems (depression, irritability, mood swings, anxiety, panic attacks)

jaw pain


weight loss or gain



Clinicians will need to consider whether such symptoms relate to a comorbid or an exclusionary condition; they should not be considered as part of CFS other than they can contribute to impaired functioning.


Clinical Course

The severity of CFS varies from patient to patient, with some people able to maintain fairly active lives. By definiton, however, CFS significantly limits work, school and family activities.

While symptoms vary from person to person in number, type and severity,
all CFS patients are functionally impaired to some degree. CDC studies show that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD) and similar chronic conditions.

CFS often follows a cyclical course, alternating between periods of illness and relative well-being. Some patients experience partial or complete remission of symptoms during the course of the illness, but symptoms often reoccur. This pattern of remission and relapse makes CFS especially hard for patients and their health care professionals to manage. Patients who are in remission may be tempted to overdo activities when they're feeling better, which can exacerbate symptoms and fatigue and cause a relapse. In fact, postexertional malaise is a hallmark of the illness.

The percentage of CFS patients who recover is unknown, but there is some evidence to indicate that the sooner symptom management begins, the better the chance of a positive therapeutic outcome. This means early detection and treatment are of utmost importance. CDC research indicates that delays in diagnosis and treatment may complicate and prolong the clinical course of the illness.

Do you think you might have CFS?

Below is an online assessment that may give you an idea if your symptoms could be due to CFS. If you suspect you might have CFS, please see your doctor for further investigation.

CFS Self Assesment (This assessment is a guide only)

FM-CFS Canada's 'Health Practitioner Awareness' initiatives

This site from Canada contains some of the best researched information currently available on CFS anywhere in the world...

http://fm-cfs.ca/resources-p.html

Download, Print and Share This Brochure

On the following site you will find a brochure (printed in several languages) produced by the ME/Chronic Fatigue Syndrome Association of Australia...
    

It gives a great overview of ME/CFS and can be printed onto a double sided A4 sheet of paper, and folded into a handy sized brochure.

Also on this site is another informative single sided fact sheet entitled"ME/CFS In A Nutshell".

Share these with your family and friends and anyone else you think could use some introductory information on ME/CFS.


More info can be found here...   http://www.mecfs.org.au/