Newsletter
Volume 1, Number 3 August/September 2001
Hello CFS and Fibro folks!
Yes, we made it through the heat wave and I’m not sure if we are still suffering from the lingering effects! Summer is not over, that is for sure, and we can count our blessings on that one! You may have noticed the ME along with CFS, that is because CFIDS and the National ME/FM Action Network organizations are presently working on having the name changed to more accurately reflect both the severity of the disease and the organ systems affected by the disease due to the widely held belief that the CFS name has lead to many misperceptions regarding the disease. The ME of course stands for Myalgic Encephalomyelitis, so if you see this you will understand the emphasis in regards to the name change.
UPDATE: DOVERCOURT FIBROMYALGIA SUPPORT GROUP
Just a note to let you know of the schedule for the fall. The meetings will take place, as last year, on the second and the last Wednesdays of the month and the first meeting will take place on October 10, 2001, from 12:15 to 1:30 pm (approx). Please note that all meetings will be held in the portable at the Dovercourt Recreation Centre.
FM Aqua starts on September 19 and, as last year, will take place on Wednesday’s at 11:00 am. The cost for this program will be :14 weeks for $84.00 ($73.00 for seniors).
FM Yoga will start on September 21 and will take place on Friday’s from 11:30 am to 1:00 pm (this is the best time slot that could be given to us and the best one for the instructor who will be Cathie Lewis). The cost of the program will be: 14 weeks for $86.00 ($74.00 for seniors). The yoga sessions will be held in the portable at Dovercourt.
Registration for both programs, FM Aqua and FM Yoga, may be done anytime after August 21, 2001.
- Marcy Manne 228-1460 (mmanne@cyberus.ca)
- Huguette Joanisse 822-7830 (hugnjean@magma.ca)
- Armanda D'Angelo 489-3342 (armanda_star@hotmail.ca)
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FIBROMYALGIA/CFS/ME ROCKLAND FIBROSUPPORT GROUP
The group meets at the Family Centre (Maison de la Famille), 840 St. Joseph Street, Rockland, Ontario, every third Thursday of each month beginning in September through to June from 7:00 - 9:00 pm. Members come from areas as far as Bourget, Hammond, St. Pascal, Clarence Creek and Orléans.
We have been meeting on a regular basis for about four years now and the group consists of approximately 12-15 regular attendees. Don’t forget, all of our members have either Fibromyalgia or CFS/ME, so some of us don’t always make it, but we sure do understand. (Please note that family members and friends are most welcomed.) If you need a ride, most of us drive and can provide transportation for you.
Our meetings are very informal, open discussion, choosing on different topics to gather our information, and sometimes we have guest speakers. Twice a year, we have a pot luck lunch: Christmas and at year-end, and we invite our families to gather with members. We supply an information package to new members and throughout the year. We like to keep the atmosphere positive, relaxing and as joyful as possible. For more information regarding our support group, please contact the following:
Mary Lou Wood: (613) 446-1971 email: marylou.wood@sympatico.ca If you live outside of the calling area, please use Distributel 237-7000, then dial our phone number and
your call will be free. Hope to hear from you!!!
Jacquelyne Paulin: (613) 487-4111 email: jpaulin.@sympatico.ca
FIBROMYALGIA SUPPORT GROUP (OTTAWA WEST):
Please make a special note that this group has a link available on the web site of Compassion in Action under its Resources listings. For those who cannot get out, this group is especially for you. They have an Online Support Group of 247 as of this date. This is fantastic, we are so grateful to have such wonderful support at our access. They also have other very interesting and informative information just for you. CHECK IT OUT!
..........................................................................A SPECIAL INSIGHT FOR THE CAREGIVER
Hope is Not Just for the Sick
Hope is important not only for people who are ill, but also for those individuals who care for the sick. Caregiving is a demanding job that takes enormous amounts of physical and emotional energy. Especially if the caregiver is very close to the person who is ill, being helpful can be as stressful as being sick. Here are some ways that caregivers can maintain their own sense of hope.
- Maintain relationships in which you are nurtured. In your role as a caregiver, you are just that; a giver. Balance that relationship with other relationships in your life in which you are the receiver of other people’s time, energy and care.
- Have reasonable expectations. Be reasonable in terms of what you expect to be able to do for the person you are caring for. You can’t make him or her well. Some days, you won’t even be able to make the person feel better. All you can do is be there. That’s good enough
- Take comfort and strength from your spiritual beliefs.
- Take care of yourself physically and emotionally. Accept your limits. Get the rest you
need. Eat well. Take time for a walk or other physical exercise, and do it alone or with
someone whose company uplifts you. Rent a video that makes you laugh. Curl up on the
couch and read a good book. Collect hugs!
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Quest - bi-monthly newsletter published by National ME/FM Action Network, a Canadian registered and charitable organization dedicated to helping people with ME/CFS and FM.
- 3836 Carling Ave., Nepean ON K2K 2Y6.
- Tel/Fax: (613) 829-6667
- E-mail: ag922@freenet.carleton.ca
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Remedyfind - Rate Which Health Treatments Really Work, and Which Don’t
A FMS/CFS treatment rating site called Remedyfind is a non-commercial, non-sponsored, patient owned site that allows individuals and healthcare professionals to rate the effectiveness of the treatments they have used for specific illnesses. The site has been in progress since the beginning of 2001, and over 400 people have already become registered members and more than 600 ratings have been submitted. Ratings can be done anonymously, or you can register as a member and then use your member name when doing your ratings. Give it a try at www.remedyfind.com and you might just find a treatment that could work for you, one that you haven’t tried yet. Even better, you can give your remedy and help someone else who has been desperately seeking another way for a treatment of their illness.
..........................................................................EXTRA! EXTRA! Read all about it...
Gwyneth A. Graham and Camilla Lawson, RPN, Living with Fibromyalgia & Chronic Pain: Daily
Reflections for Coping (Stoney Creek: Gralaw Enterprises, 1998). You can order this 96-page
pocket-size book by sending a cheque or money order for $9.95 (includes postage and handling) payable
to Gralaw Enterprises, P.O. Box 66608, Stoney Creek Postal Outlet, Stoney Creek, Ontario L8G 5E5.
(Please note that $1.00 from each book sold will be donated to the Ontario Fibromyalgia Association.)
Devin J. Starlanyl, M.D. and Mary Ellen Copeland, M.S., M.A., Fibromyalgia & Chronic Myofascial
Pain Syndrome: A Survival Manual (Oakland: New Harbinger Publications, Inc., 1996)
Devin J. Starlanyl, M.D., The Fibromyalgia Advocate (Oakland: New Harbinger Publications, Inc.,
1998)
William Collinge, Ph.D., Recovering from Chronic Fatigue Syndrome: A Guide to
Self-Empowerment. Book posted free on Dr. Collinge’s website: http://www.healthy.net/collinge
.......................................................................... QUOTES OF THE MONTH: ""Persistence opens up treasures which bring perennial joy." (Mahatma Gandhi) ""Be kind to yourself... pay attention to that inner voice, -- you’re just as deserving of
compassion and forgiveness as anyone you know." (Oprah) ""The most important thing in life is to learn how to give out love, and to let it come in." ((Mitch Albom, Tuesdays with Morrie: an old man, a young man, and life’s greatest
lesson (New York: Doubleday, 1997), page 52) ) .......................................................................... Humour Corner: ""Since I have been sick, I have sometimes thought of my body as an old, beat-up Chevy
pickup, sputtering down the road on a few cylinders." (Kat Duff, The Alchemy of Illness (New York: Pantheon Books, 1993), page 22) Attention: Subscribers!