CFS/FMS News January - February 2003
of South West Florida WWW.CFS-FMS-FL.ORG
Meeting Third Saturday of the month, 10:30AM to Noon at the Cape Coral Hospital,
In the ‘New Café’, 636 Del Prado Boulevard, Cape Coral.
January 17 – Round table discussion lead by a licensed counselor
February 21 - Round table discussion lead by a licensed counselor
Handouts on Chronic Fatigue and Fibromyalgia are available at every meeting. A therapist leads round table discussion. Information and support is shared by all. Perfume and scent free due to sensitivities. Programs announced as available.
Newsletters are published every other month.
If you received this newsletter in the mail it means we do not have your e-mail address.
Visit our very own web site at www.CFS-FMS-FL.org
From the Editor
My hopes are that each and every one of you has had a healthy, peaceful and fulfilling set of Holidays. It can be a most stressful time, and it comes around every year, so why do we still get so stressed out?!?!!!
I will never understand the human capacity for self-destruction! And I am a prime example myself. I know what I need to do to make my life simpler and better. Yet I still follow old habits. I am stuck in the ‘beating myself up stage’ described by Stephanie Kelly in the article below. I hope you, and I, can take something away from this article, or from reading her book and make one little step, today, toward helping ourselves. After all only little steps are possible for us most of the time so why burden ourselves with the big picture? Perhaps just one little thing today. Maybe getting a start on writing down medications, dates and symptoms for use with doctors or SSA. It doesn’t have to be completed today, just write something down. Maybe today will be the day you begin to move more. Just a new stretch while still in bed will be enough for today. Or take up a jigsaw puzzle to keep your brain going. All you have to do today is get the box open and the pieces out. Or take 20 minutes of quiet time just for yourself. It won’t hurt anyone else!
It won’t take much to start, and a little each day, one day at a time will get us a lot farther than we are right now. Maybe by this time next year we will have found a way to better survive the seasonal stress, one step at a time.
Love and hope for all, Roxy Barber
239/541-3429
Stop Fighting Yourself
Found on the website www.fmaware.org/fmOnlineNewsletter/vol13_no21/article_StopFightingYourself.htm
Dec 17, 2003
Stop Fighting Yourself by Stephanie Kelly
This article and book are about one woman’s struggle for acceptance of CFIDS over the last 30 years. She explains that she went through stages, at first the struggle was to resist feelings of “giving-up and giving-in” to the disease. She battled herself with so much energy that she was unable to allow herself to recover or regain what was left of her life, consumed with how she should be and beating herself up over her laziness and failures.
Stephanie slowly came to the realization that she needed to reinvent her mental outlook. The first step was to mourn the loss of her old life, yelling and screaming at the disease. It took time to heal this hurt just as it does any loss. The second phase was to create a new set of “normals”. Setting obtainable goals and using the passion and energy she used to devote to berating herself to celebrate what she could do and stop worrying about what she couldn’t. She says the most important aspect was learning not to beat herself up if she didn’t reach a goal as planned, she knew eventually she could. She learned to replace internal dialogue with more positive pep talks and congratulations to herself.
All of this has resulted in mental peace. No more self ridicule. This in turn automatically created physical serenity. “If I can’t have a perfectly healthy body, I might as well have a perfectly peaceful mind.”
Her book is titled If You Would Just Get Out of Bed and can be purchased at www.ifyouwouldjust.com
CFIDS Name Change News
From the website www.cfids.org/advocacy/cfsac_statement.asp
The CFIDS Association of America website
The CFSAC Chronic Fatigue Syndrome Advisory Committee reported to the CDC their statement on the reasons they felt this would not be a good time to change the official name of the diagnosis of Chronic Fatigue Syndrome.
The committee states that there is widespread dissatisfaction with the current name of this syndrome, with both patients and physicians feeling that the title focuses too narrowly on the poorly defined symptom of fatigue and engenders disrespectful views of the patient with CFS.
These are some of the reasons stated why, even though they concur that the name is detrimental, it should not be changed at this time.
CFS has a growing acceptance in the medical community and a change would hamper this progress.
The name chosen for replacement of the current name CFS, Nueroendocrineimmune Dysfunction Syndrome, is too vague.
A change now would disrupt research criteria that are currently accepted worldwide.
It would disrupt funding from NIH and CDC.
All organizations, medical journals, literature and websites would have to change and research materials would be too hard to locate.
A name change alone will not change the disrespectful attitude of the public or medical profession, but education will.
Reading List/Web Surfing
Check your local Library for all kinds of reading; CFIDS, FMS, and related disorders, spiritual, self-help, history, nutrition, yoga, art, and just plain good reading. You name it, they got it. And if they don’t they will get it for you on inter-library loan. some libraries give away donated magazines, and some libraries offer a special book delivery for people who cannot travel.
BOOKS
If You Would Just Get Out of Bed, Stephanie Kelly
WEB SITES
http://members.tripod.com/~ms_stix/fibro.htm This is a great site that explains "What is Fibromyalgia?"
www.ifyouwouldjust.com Stephanie Kelly’s web site.
www.snl.depaul.edu/about/our_program.asp and www.snl.depau.edu/contents/current/forms/chronic_illness.doc DePaul University web site and their Chronic Illness Initiative page.
www.cfids.org/advocacy/cfsac_statement.asp Statement of the CFSAC on the name change for Chronic Fatigue Syndrome.
www.fmaware.org Webiste of Fibromyalgia Aware newsletter
www.cfids.org Website of CFIDS Association of America
Get a degree on-line, developed for the chronically ill.
Found at the website www.snl.depaul.edu/about/our_program.asp
DePaul University has been in existence for 100 years and has had a college of distance learning for over 30. Now they have developed a program for the chronically ill to earn a Bachelor of Arts on-line with the Chronic Illness Initiative.
Working with a special advisor you can complete your degree through their distance learning program at your own pace. Your will be able to transfer old courses no matter how long ago you took them, get credit for life and work experience, pay less than you would at any university, and do it all in your own time.
This special program, the Chronic Illness Initiative, gives access to higher learning to those disabled by chronic illness by allowing flexible time to complete courses and programs when interrupted by symptoms. A special advisor is used to plan and carry out your studies program and the faculty is trained to understand and respond effectively. There is no minimal enrollment. See more at www.snl.depau.edu/contents/current/forms/chronic_illness.doc
Disclaimer
The Chronic Fatigue and Fibromyalgia Syndromes Support Group is a self-help program to present ideas and exchanges with the members. None are to be construed as medical advice. This newsletter does not dispense medical advise not is any endorsement intended. No responsibility will be assumed for any specific medical hypothesis or product, and will assume no responsibility for any treatment or activity undertaken by readers.
Contact
Bonnie Dewar 239/543-2812
Terry Connor 239/945-1247
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Send a request to Roxy at ... webeinflorida@juno.com
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