Teleconference Part 1


When Pushing Stops Working
Awareness Day 2008 Teleconference

The Take Home Messages - Part 1

Elly B., MS, & J. Gilbert, NCCAOM

Our Common Message

    1. Having “no standard treatment” or having “no official cure” is not the same as people don’t recover. Some do. Fully. And they remain well.

    2. There are things out there that help. If you haven’t found them, keep looking. You are worth that investigation. We cover some of what we’ve observed to be helpful.

  1. Awareness Day

    1. Officially for Chronic Immunological and Neurological Dis-eases (CIND)

    2. Officially May 12, the birthday of Florence Nightingale, a leader in nursing, sanitary conditions, helping the poor, theology, statistics, and opportunities for women, who was bedbound many years after an infection.

    3. Includes CFS, CFIDS, M.E., Fibromyalgia and many other conditions.

    4. Unlike most Awareness Day events, this one is not about making the public or policy makers more aware. This one is for spurring more awareness and inspiration in those with symptoms and chronic conditions about aspects of their experience that provide opportunities for change and improvement.

  2. Introductions

    1. Elly B. has the experience of disabling symptoms and multiple syndrome diagnoses who has coped via volunteering with support groups for over 15 years. She is an educator, and advocate, and a source of encouragement to many with previously unexplained multi-symptom illness. She reaches out via telephone and in-person events, the web, and email.

    2. J. Gilbert is a practitioner of Traditional Oriental Medicine, who uses custom herbal prescriptions and acupuncture. He is formally trained as a masseur and in various martial arts techniques. He focus for 20 years has been chronic illness, particularly dysfunctions in the nervous and immune systems. He studied in both Europe and in Vietnam.

  3. Part I: “Making Connections” - Elly B.

    1. How we feel, how we fare may have something to do with how we make connections: connections with others who support us, and connections of bits of information we encounter that when added up, show us new ways of being and taking care of ourselves.

    2. The connections we make with others
      Connections are very important, even if we are home alone connecting with an author of an article. Our interactions with friends, our phone friends, and so on feed us and so we must look at them. Its important to find supportive connections of people who respect us in our journeys. Support can be informative or comforting or both and it may have to come from people outside your regular circle of family or friends.

    3. How are we at connecting all of the dots?
      All the information and support we collect can be vital to how our treatment goes, especially if we look for patterns and new insights available there. Are we using the feedback our mind and body give to adapt each day for our benefit? We must notice what goes on, because we are the ones there with us all day.

    4. Pushing feels good... until it doesn’t.
      It works. At first. Maybe for decades. Until it doesn’t. But because it worked and its what we know, we will want to do it again and again, wanting it to work. It will take some effort and attitude shift to make the goal being normal, doing reasonable quantities of activity for our species. It will take listening to the body and honoring what is heard.

    5. The body talks in symptoms
      Grouped for this event, into 4 categories:

      - The Fatigue Feelings
      - The Pain Feelings
      - The feeling the body ought to be doing that automatic/autonomic stuff the way it used to
      - The feelings that go with activities that one has already given up because they feel to awful

    6. “The Fatigue Feelings” 
      Exhaustion beyond tiredness, weariness, cannot carry , lift or move another ounce. Cognitive problems: memory lapses, difficulty reading or driving or concentrating, thinking slowness, unable to make decisions. Mood inappropriate to situation. Difficulty learning new things, being in new situations, feeling overwhelmed. Muscle weakness and tremors. Feelings of desperation, frustration, wishing it would just all go away.

    7. “The Pain Feelings”
      Can be widespread of diffuse as in FM, or more localized such as the chest pain in MVPS/Dysautonomia, the jaw pain of TMJ, the pelvic pain in vulvodynia, or the bowel pain in IBS. Can be cramps, spasms, headaches, sore throats, aches that are pain or aches that are pressure. It can be stiffness, soreness, and for some it changes dramatically throughout the day, from day to day. Some more pain in morning, others more at night. Some more pain with overdoing, some from moving to little. Some people have more pain proportionally to how much upright time in a day.

    8. “The Whaaaat?
      My body used to do this automatically -- now I’m miserable feelings.”

      Being too sensitive to light, heat, cold, sounds, smells.
      Being so sensitive to stress any little bit starts a downward spiral.
      Not being able to regulate temperature, the bowel functioning being off with either diarrhea or constipation of both, the weather causing changes in symptoms. Waking up throughout a night, not being able to fall asleep. Sweating too much or too little. Needing several lamps on to see or sensitivity to light. Poor circulation and not being able to sit still. Relaxation techniques such as deep breathing not feeling good as expected.

    9. “The don’t know what that feels anymore because it feels so awful I never want to feel it again Feelings”
      When certain activities start to bring cascades of symptoms, they won’t push to do them anymore. Some have had to give up things like driving on highways, navigating the subway system, taking the bus, going to school, working. Some individuals must avoid all confrontations as too symptom producing with the added stress. Some must give up vacuuming because the bending and leaning and exertion is just too much.

    10. The word Syndrome comes from “to run together”
      How ironic since many people with syndromes have stopped running altogether.
      A syndrome is a group of symptoms running together, nothing more.

    11. Many syndromes have the same symptoms
      It is only the order, or just the top two or three symptoms reshuffled. A person person with many symptoms can “qualify for and collect” labels of many syndromes by going to different specialists, by emphasizing what symptom is worst of the list for that day.

        -- Fatigue & Cognitive & pain... + Internist  => Chronic Fatigue Syndrome (CFS)

        -- Pain & Sleep Problems & fatigue ... + Rheumatologist => Fibromyalgia (FM)

        -- Irritable bowel & food sensitivity & pain, fatigue, poor sleep ...
                    +Gastroenterologist => IBS   
      and so on....

    12. Summary so far
      I’ve described what it could feels like once the pushing has led to symptoms (not everyone will have all the symptoms, or even some of them all the time). And I’ve described how one might get a label of this syndrome and/or that one depending on which symptoms you report as most bothersome and which different specialist you go to. Several in our groups have many syndrome diagnoses.

    13. Introduction of co-speaker
      J. Gilbert, is a practitioner who goes beyond the grouping of and managing of symptoms to give a cohesive perspective that ties together the person, his or her symptoms, in the context of the whole life they are experiencing, with hope for change toward health.

  4. Go to Notes for Part 2 - “Stress Talk” by J. Gilbert and Q&A

Skip to Notes for Part 3 - “E T Phone Home, Gratefully” by Elly B.

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    2. Listen to the Teleconference at ”2008 Awareness Day”

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