the UNSEEN ILLNESS newspaper article

Discussion in 'Fibromyalgia Main Forum' started by sleepyinlalaland, Jul 10, 2006.

  1. sleepyinlalaland

    sleepyinlalaland New Member

    I was surprised and pleased to see the following article in today's newspaper. Below I've pasted complete story:

    The unseen illness
    Writer puts a face on chronic fatigue syndrome

    By Joan Morris, Contra Costa Times
    July 10, 2006

    Dorothy Wall's Oakland home, not far from the UC Berkeley campus, is a model of linear simplicity.

    Bookshelves line the walls in perfectly straight lines, and the furnishings are sparse both in number and design. The hardwood floors that diffuse the glow of the afternoon sun are arranged in rows of narrow planks.

    It is the home of an organized mind and an ordered life that should be, but isn't, at odds with Wall's creative life work, that of a writer and writing consultant. Does the home speak more to Wall's style or her illness? Even Wall isn't sure. So much of who she is these days is related to her almost 30-year march alongside chronic fatigue syndrome.

    The disease can render its sufferers virtually invisible, confined by a nebulous illness and often ignored by a public that doesn't understand or appreciate the true nature of their disease. But inside the confines of her home, Wall is very much a solid figure, in control of her environs and her life. And with her recently published book, "Encounters With the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome" (Southern University Methodist Press, $22.50), Wall is attempting to give a voice and a face to the illness.

    It wasn't always so. When Wall developed the chronic disease in 1978, she had no idea what she was suffering from and neither did the doctors who treated her symptoms, lectured her about burning candles at both ends and tried to send her to therapists to deal with her "issues."

    Whether they vocalized it or not, there were those who labeled Wall a malingerer. There was no cause for her illness; therefore, there was no illness.

    But Wall, who jokes that she was never on the forefront of a single trend until 1978, was one of the first to fall victim to what later would be called chronic fatigue syndrome.

    In the late 1970s and early 1980s, hundreds of people were going to their doctors complaining of odd symptoms. Doctors at first didn't recognize the pattern; and many patients, including Wall, were told there was nothing wrong with them.

    Wall was in the middle of an upheaval when she fell ill. She was a single mom going through a messy divorce and trying to rebuild her social life. She also was finishing up graduate school and working four days a week at a bookstore. She drove herself to the point that when she contracted mononucleosis, it hit her particularly hard. She now believes that may have been the trigger that soon brought on the syndrome.

    At first, Wall thought she was suffering a recurrence of mono. Or perhaps she'd picked up another virus or the flu. When her symptoms worsened, she saw a doctor, who prescribed antibiotics and suggested she take it easy. But weeks went by when she was too ill to function. She lived in a fog, racked with pain and with barely the energy to take care of her daughter.

    One morning she awoke to realize that after two months, she genuinely felt better. The next day, she had a relapse.

    "That's when I knew I had something else," Wall says. "I just didn't know what."

    For the next 15 years, Wall says, she "passed." Passed for healthy, passed for normal, passed for happy. But she wasn't. Somehow she struggled through, watching as doctors scoffed at those like her and as the disease became a national joke, called the "Yuppie Flu."

    But every year she grew a little stronger. She was never well, but she became less ill. And the better she felt, the more she pushed herself.

    "People who cope with this illness try to cultivate the normal," Wall says, "including things in your life that normal people have — lunch with a friend, reading a book to my grandson, working. You work really hard to have those things."

    But Wall pushed too hard, and in 1995 she had a complete collapse. She was unable to leave her bed for more than an hour a day, and it has taken her 10 years to get to where she is now. Wall rarely leaves her home for long and must allocate her time. She works from a home office, spending a few hours on the computer, a few on the phone.

    She is like an energy miser, carefully doling out her precious coins of energy. She functions well, she says, if she stays within her "energy envelope." Venture too far outside for too long, and the price is dear.

    When health experts began to realize they were dealing with a real disease, they began looking for a way to diagnose it. What they discovered is that while the onset of the disease may be different for some, there are three distinct symptoms that define the syndrome: overwhelming pain, crippling exhaustion and a brain that seems locked in a deep fog.

    Early research focused on finding a single cause for the illness — a virus or pathogen, a chemical exposure, a genetic predisposition. Two decades later, researchers still have not identified the cause or a cure, but they now agree that any of those things can be a trigger that launches an attack. They've also discovered that CFS, or a type of the illness, has existed for many years, couched in euphemism of the time.

    For Wall and others who have had the disease for many years, there is no expectation of a cure. They live by carefully managing their lives, monitoring their energy output and pacing themselves. Symptoms, from the pain to the occasional plunge into the cognitive fog, are treated with medications. The best they can hope for is to hold on to what they have.

    For those newly diagnosed, the news is more heartening. Early treatment of symptoms and a slowdown of activity has allowed many to make a near full recovery, although they must be forever mindful of the illness.

    And more good news, Wall says, is that doctors are more knowledgeable about the disease and less likely to dismiss symptoms as "all in your head." Much work, however, is needed, Wall says. Of the diseases that get federal funding for research, the syndrome languishes at the bottom of the list.

    It's not easy to live with the disease, Wall says, but it is easier than it was. The order she imposes on her life may, from the outside, make her appear as a prisoner in her home. She ventures outside little and follows a precise schedule to ensure she accomplishes what she can without pushing herself too hard.

    The most difficult is accepting those limitations. The disease is with her always, but when symptoms flare, they typically focus on her throat, leaving it sore and raw, and robbing her of speech. If she catches a cold, it's likely to leave her unable to speak for months at a time.

    Reducing her exposure to cold viruses means reducing her contact with others, particularly her young grandson. In the winter, visits with him must take place outdoors, and she can't hold or touch him.

    But when you think of Wall, don't think of her as a victim, she says.

    "I don't want CFS to define my life," she says.

  2. mrdad

    mrdad New Member



    ----for sharing that Newspaper art. with us. Being that

    Dorothy Wall lives in the Bay Area, it is close to home

    for me. She is a symbol of courage and an example to

    others of how debilatating this illness can be.

    Thanks again,
    MRDAD
  3. Lolalee

    Lolalee New Member

    Thanks for posting this article. It took me quite a while to read it, but I'm glad I invested the time and energy. Ms. Wall's life sounds all too familiar. What I cannot understand (and it's probably because of my brain dysfunction)is why "For those newly diagnosed, the news is more heartening. Early treatment of symptoms and a slowdown of activity, has allowed many to make a near full recovery". And why is it less hopeful for those of us who have had this illness for a long time?

    This implies that CFIDS is progressive and that the longer one has it the worse it gets. Haven't we always been told that it is not progressive?

    Am I imagining things?

    Good Article.

    Lolalee
  4. kjfms

    kjfms Member

    for posting.

    I just wanted to make sure I can find this to read later off to bed so I can go to work.
  5. smiffy79

    smiffy79 New Member

    i read it all :) thanks for posting :)
  6. IMHOT

    IMHOT New Member

    Sleepy
    Thanks so much for posting this article ! Sometimes I get caught up in the "you look good" or "I am glad you are feeling better " mode that I just wish they really knew how horrible I feel ......but then I would never want to dump that on anyone. Every day it is a challenge to be a part of the real world and be the person I once was. I am trying to have more acceptance of what I have and not try so hard to be the person I use to be. It is such a comfort to read an article that understands we do have real symptoms. Not one of us want them nor would we wish it on anyone. It is just great to have validation of this frustrating condition. I just want to sit back and say thank you . It is so great that I dont have to explain a thing and know there are friends out there that really understand and care. thank you thank you thank you !!!
    Jeanne
  7. Jen102

    Jen102 New Member

    really tells it like it is! It sounds like my life, except that my house is much messier than hers is apparently. Ha! Blessings to you. Jen102
  8. sleepyinlalaland

    sleepyinlalaland New Member

    when the newspaper says (near end of article) that one can RECOVER if caught early....that they are falling for what may be "folklore" about CFS.

    I think that the treatment they are referring to is, that if you REALLY take care of yourself at onset of CFS symptoms, some people can go back to "normal". This may be true (after all, how many people do or can take to their bed for weeks unless they absolutely HAVE to!) But, anyway I think that bit of info. is really far from proven.

    Also, I kinda wished they would have referred to recent findings by CDC that there looks to be genetic component to the disorder.

    But, I'm quibbling. I was glad to run across an article written about a very credible person, who articulated so well about what one goes through!
  9. place

    place New Member

    How is the xyrem treating you?

    Is it working?
  10. sleepyinlalaland

    sleepyinlalaland New Member

    You're right...I don't post very often, and usually when I do, it's to bring attention to media articles, and newer research regarding CFS/FM. As a female with a sad history in my family (mother, sister & daughters)of being affected by these conditions, I long for the day that alas we each are afforded the dignity of feeling VALIDATED. Sure hope it happens in my lifetime.

    As for they Xyrem, I don't have any clear-cut results to post about. I had a free one month supply, which I had to stop and start for various reasons. I was never able to handle the 2nd dose...it would not put me back to sleep, and I would feel very uncomfortable for the rest of night after taking it. So, I just took the one dose of 6 ml. I got a couple hours sleep on that, then would get in a few more (off and on) until about 7 (I go to bed at midnight). I probably got about 4 to 5 hours total of sleep. This is not that much, but I figure that at least it is a couple hours of very DEEP sleep, and so I should feel overall improvement over the decades of VERY LIGHT sleep.

    I got to the point where most days I DID feel a bit better than I did pre-Xyrem. Now, I am about out of that free "month's" supply, and I really think that probably one needs to take it for at LEAST six months (especially long-time sufferers)to know how helpful this will be. If I'd had a really definite positive response by now, I would campaign to have my insurance (which is medicare) cover it. So, the sad part is, I may never know what the ultimate result would be.

    Hopefully someday Xyrem will more routinely be prescribed for fibro. Then maybe I can try it again and give it the necessary time to see how helpful it can be. I do think that the longer you have been sleepless...the longer it takes to "straighten out your wiring".

    Best to you, Sleepy.
  11. sleepyinlalaland

    sleepyinlalaland New Member

    Actually, I DID post just the other day regarding an article I'd read in the Ladies' Home Journal. It was about pain and about how...if left untreated...it can re-wire your brain to experience MORE pain! Makes sense to me. I'll try to find it and bump it up!