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| Date/Flyer | Topic/Speaker/Film | More Details |
| Feb 20, 2010 | Discussion | Face-to-face talk time. |
| Mar 20, 2010 | POTS Luck Social | Bring what YOU can eat safely. |
| Apr 17, 2010 | Discussion | Face-to-face talk time. |
Keep up to date by using our Events page. Some other group events listed there, too.
Recent Meetings
December 2009 Meeting Canceled Due to SNOW.
POTS LUCK Social - Rescheduled for March 20, 2010January 2010 Meeting Rundown
See full meeting rundown in CFSupport archives. This is the short version.The Northern VA CFSupport January 2010 meeting had great information sharing, a show and tell of mottled skin, and creativity overflowing.
One discussion was about whether we look normal to others or not. Yes, there is that component of looking normal or not too sick, but with the unsteady ways people walk and move, and how heads tilt over because they are to heavy to hold up, and with the extra stiffness in posture for some, and with the mottled skin or paleness, with the bouncing knees or busy hands, there is plenty to notice about us in looks!
Previously, the word summary has been used. This month, we switched to a "Run Down."
1. Mattresses
2. Mottled Skin - signs of poor circulation, being past your point of being fine
3. Our Group within the Group of Crafters
Mattress Testers
Anyone remember the book by Katrina Berne,
CFIDS Lite: Chronic Fatigue Immune Dysfunction Syndrome with 1/3 less seriousness
Well, in this book with cartoons and irony and absurdity about being ill with CFIDS, there are 3 jobs suggested for people with CFS. One of them is mattress tester.
Our discussion last Saturday really reminded me of that. Members talked of beds, of being in stores and lying on this and that mattress for hours, about how the right mattress was found, even as others complained of drawbacks about same models.
I Sleep Beds
Sleep Number by Select Comfort
Tempur-Pedic
Cost-co memory foam mattress
One person loved climbing into a bed with COLD sheets. The way she said cold you could just feel the capital letters! That helps her cool down, relax. Another turns the heater on for a few minutes before she gets in, then turns it off once in the bed. That helps her symptoms stay calm.
The consensus was not about a particular kind of mattress, but on how important it is to have one that supports or comforts you, that provides adjustments if that helps you adjust to your varying symptoms. It was also about it being a good investment of time, of energy, of precious finances to get something that truly supports helps since we may spend so much time in or on the bed.
Another thing that became clear was that we were describing ways our nervous system and symptoms were responding to stimulii and how we were using that feedback to help ourselves. Because the body does some major changes in response to too much cold or too much heat or or too much hardness or so much sinking in so far you feel like you’re being squished, there were many clues and things to explore about our reactions.
Some beds or frames or mattress do not allow for the recommendation for people with dysautonomia to tilt the whole bed frame, so the hips and kidneys will be slightly higher than the feet. (Wedges don’t work for this because they only raise head above stomach and kidneys. Both wedges as pillows and tilting the bed frame (head-up) help with reflux, GERD, heartburn, but only the tilt of the whole frame helps reduce dehydration and improves potassium retention in the blood so one may move around a bit easier in the mornings.
Staying at a hotel was highly recommended as an “all night” way to really try out different mattresses.
Though I started with a joke from the CFIDS Lite book, talking about beds is very important and useful and serious. We won’t all end up with the same bed, though there are some more popular than others. The Sleep Number fan at the meeting says the sales person told her that almost all people with FM she knows choose the same model of Sleep Number. Talking about these issues helps us discover more about the health and comfort considerations of mattresses and beyond.
Perhaps we can be models, too, …. of mottled skin,
a sign poor or altered circulation
We had a really good example of arm skin mottling at this meeting. It was on the arms, bright red mottled in with pale. Sometimes people call it patchy. My dictionary defines mottled with “smears of color.” How artistic!
More frequently on legs, we see the darker blue or purply mottling with paleness. The bluish more solid skin is often referred to as dusky.
Paleness, or drained color, can happen of a variety of skin colors. A person’s skin color, especially in the nail beds and thinner areas with look different when there is a lot of fresh red oxygenated blood in it, vs when there is less blood in total, vs when the blood is bluer from having given up its oxygen, i.e., when the blood is more from veins rather than arteries.
Doctors who know to look for the dusky skin may make patients still still with shoes and socks off and pant legs rolled up. For those vulnerable, this will aid the skin color changes and be the evidence of circulatory problems.
If you are already very symptomatic, you many be already bluish and mottled, just from the anxiety of being at the office visit. The test can provoke greater severity so you may want to skip it. The longer one stands, if prone to this, then the more mottled more solid bluishness climbs up the leg. One doctor I went to asked me to sit down because he was getting uncomfortable watching it. I was uncomfortable and becoming more so, but it was so “normal” to me I just kept increasing my will to stand there, increasing the lock my joints mode, increasing the call on my adrenaline to keep standing to do what was necessary to get help.
Grateful he finally felt uncomfortable and had me sit so I could stop trashing myself and calling it a good thing. There was plenty of evidence without this test that I had the problem, from history, from other tests, but, it was quite striking for both of us to see it once again. It did provide me with more motivation to help my circulation in all ways I could learn and implement safely. Gratefully, I've learned this forced expression doesn't lead to treatment and I can stop doing it, and can invest the time in finding out how to alleviate it in regular life.
The mottling on someone with FMS, or CFS, or OI, is usually a little different than you see if you google it and find pictures of it in other illnesses. It might be helpful for us to share pictures of our form of it.
Mottling can be a sign that circulation, which is controlled by both the nervous and circulatory systems at the very least, is under more strain than usual and not up to evenly distributing the blood anymore. Some areas are getting too much, some too little. Some blood vessels are constricting too much, some dilating too much it seems.
When we have serious conditions, seriously affecting our lives. Respecting the precious energy we have left and respecting what capacity to circulate blood we have left becomes particularly important and more serious than ever.
Mottled skin is another great clue, a great conversation starter from our bodies. We can listen and offer something back. E.g. “Thank you body for showing me this pattern of skin. I acknowledge your strain and your art and how you are doing your best to move my blood around in this situations, under these conditions."
Our Creative, Crafty, Jewelry and Clothing making Group within the Group
At least 3 of our attendees regularly bring craft projects to meetings, two do beading and one knits. This month, two of them were crafting, and a first time attendee was pleased to find and meet people to immediately have two things in common with, conditions and creating wearable art. She was wearing earrings she made. (Photos are in our CFSupport Attachment archives.)
At one point, it came to our attention that a big-ish copper- or amber-ish shiny bead had been dropped on the floor. The hunt was on, together about half of us were trying to see the bead. It was a sparkly one, but that didn’t help us find it though we looked at so many angles. I found two tiny beads on the multicolor carpet from some other group’s craft project among staples and snips of paper.
The opportunity to stretch a little helped me, a good reminder that when doing fairly well, it is still helpful to move around as tolerated to help that circulation.
The search for the bead on the floor, together looking one small piece of a larger work of art, made me see how it relates to our seeking and searching for something together…. kind of like the seeking and searching together for ideas for coping, doctors and treatment, and the seeking and searching together for support, understanding, non-judgment, acceptance and compassion. Finding stuff from other groups seemed to suit me well ‘cause I do that all the time, use materials and ideas from other support groups.
May we all continue to find the beads we were looking for and the surprise ones we didn’t know would be there.
Elly Brosius
1-20-2010
To get notices of upcoming meetings, read more commentary about speakers and events, sign up for CFSupport emails.
Media Highlights
Scientist Smackdown: Is a Virus Really the Cause of Chronic Fatigue Syndrome?
Discover Magazine - 1-6-2010
Mother cleared of ME daughter's attempted murder
BBC News - 1-25-10
A mother has been found not guilty of the attempted murder of her severely ill daughter who suffered from ME.
Woman finds relief from fibromyalgia pain
Suburban Chicagonews.com - 1-6-2010
Quest inspires Cherie Stechly to write book
With the assistance of a supportive physician -- Dr. R.W. Schubert of Joliet, who also wrote a forward to Stechly's book -- Stechly reviewed her life history of illnesses, her environment and her lifestyle practices. She then overcame her symptoms through researching possible antidotes, which included dietary changes, stress reduction, practicing a positive attitude, applying spiritual principles, adding vitamins and herbal remedies. Stechly said her fibromyalgia is now in full remission. "I took full responsibility for my illness and it was not easy," Stechly said.
For more media coverage, see our In the Media page
and the
Spark! Awareness for CFS Media page at CFIDS.org
New Books
Restful Insomnia: How to Get the Benefits of Sleep Even When You Can’t
The Healing Powers of Chocolate
Innovative Holistic Approaches to PTSD and Life Stress: Path to Success and Freedom
Overcome Your Fibromyalgia
Living Well with Pain and Illness: The Mindful Way to Free Yourself from Suffering
Chronic Fatigue, ME, and Fibromyalgia: The Natural Recovery Plan
EFT for Fibromyalgia and Chronic Fatigue
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection
A Mindfulness-Based Stress Reduction Workbook
Awakening to the Secret Code of Your Mind: Your Mind's Journey to Inner Peace
The Fibromyalgia Cookbook: More than 135 Easy and Delicious Recipes to Fight Chronic Fatigue
Muscle Pain: Diagnosis and Treatment (Textbook by Dr. Gerwin of Bethesda)
For links, more books, audios and videos, see our Books 2009 and Books 2010 pages.
Our Newest & Most Updated Web Pages
In 2009, we changed our domain name to cfsnova.com. Please update your bookmarks.C -- for CFS, CFIDS, and CFS/ME
F -- for Fibromyalgia syndrome
S -- for all the similar Syndromes we invite / include in our group
NOVA -- for Northern Virginia
Recent Updates:
Practitioner Updates - new Myofacial Trigger Point Therapy Section
Events 2010 added
Our most frequently updated pages include:
Events, In the Media, Groups & Association, Practitioners
Global News:
The Creative for A Second or Two Project
Following the success of Creative for a Second (www.creativeforasecond.com), Melbourne artist and designer I & The Others (a.k.a. Kirrily Anderson) has just launched her next CFS/ME/FM project, Creative for a Second or Two.
Inspired by the 1000 Journals Project (www.1000journals.com),
Kirrily is organising to send blank journals around the world to people
with ME/CFS/CFIDS/FM for them to fill up with anything they like -
artwork, thoughts, photos, found objects, deep dark secrets!
Each
person will have a journal for two weeks and then post it [send it by
snail mail] on to the next person on the list (there will be a mailing
list in the back of each journal).
Should a contributor not be
well enough to contribute anything within the two weeks they can add
their name to the bottom of the list so the journal can come back to
them, but it must keep moving. (The project is about expressing - not
making a work of art necessarily, so even during the time of a crash,
some frustration may be expressed in some way on the pages!)
There will be photo updates on the Creative For A Second Facebook group
(feel free to join - just search for Creative For A Second under the
groups section). Contributors can scan or photograph the journal while
they have it - even make a movie, and upload it to the group so
everyone can see how the journals are progressing!
After 12
months or so of circulating all the journals will be returned to
Kirrily and she will take them apart and have all the pages on display
as part of an exhibition, starting on Awareness Day (May 12, 2011).
With finances permitting a book will also be published.
This is
a project for anyone and everyone with this debilitating illness - not
just "artists" - we all have creative bones within us!
For more information, or to register your interest (just send an email with your postal address), email Kirrily directly at creativeforasecond@gmail.com
To read and view the first book full size, Creative for a Second: Creative Works by People Living with CFS/ME, visit the website and click on Open Publication. A few copies of the print softcover edition are still available.
Encouraging E-mail (It might take an e-Village)
|
Toni and I joke about and are very serious that it takes belonging to many
e-mail lists of encouraging quotes or encouraging stuff to feel
encouraged. We cite two main reasons: 1) With all the challenges we face, with all those years of self talk amounting to putting ourselves down, we're gonna need many bits of encouragement throughout the day in our present to rebalance. We’re gonna need many reminders to view the world a little differently, to look at perhaps some smaller details we missed or some "bigger pictures." 2) Some of the quotes or other words in the daily or weekly emails aren't as encouraging as one is hoping for. Instead, they actually reinforce the old ideas suggesting you are aren't good enough, or that you could do more, do more, do more, should do yourself in doing more. We get better each day at deleting faster those that don't feel encouraging, and lingering more on the ones that "glow" with us, where we are that day. When you only get one a day, and its a stinker or just uninteresting, uck! Here are links to some e-mail lists that we belong to now, have in the past, or are just starting with, in no particular order. There are more out there, but we trust that if you are open and look for them, you will find the ones that best suit you (or you can unsubscribe and can seek another five to try). - Elly and Toni, early 2010 |
The EGG Dish
We have teleconferences (see table below), a Yahoo E-mail Group called EGGdish, and occasional meetings in Washington DC area restaurants.
EGG meetings are:
| Day Feb ??, 2010 ?:00 PM EST |
Conference Call | Write
EGG
for Dial-In Number and access code. Dial number, enter code, followed by #. Say a name (or not), the # again. |
| Day Mar 29, 2010 1 PM EST |
Conference Call | Write
EGG
for Dial-In Number and access code. Dial number, enter code, followed by #. Say a name (or not), the # again. |
One More Thing: Ashely raised $1000 for CFIDS!
CFSupport Member Pam G in Massachusetts reports:
For those who know my niece Ashley... She started her business 3 1/2 years ago to help promote awareness and raise money for the CFIDS Association of America, and has been giving donations every single month since then. As of this month, her donations have reached a total of $1,000. There are no words to tell how proud I am to share this with all of you.
Press Releases about Ashley’s business
Peruse Ashley’s store for Awareness Products - CFS
Peruse Ashley’s store for Awareness Products - FM
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