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No Longer Naive in the Ways of The Beast

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 5, 2014.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...

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    When I first got back online five years ago, I was naive in the ways of this beast we call ME/CFS.

    I guess I thought that whatever it was that I had was what you had ... what they had ... what that person laying on their face over there had ...

    Turns out I couldn't have been more wrong.

    I had been slowly recovering and I wanted so much to share what I learned with other people who were sick because then they would all get better too.

    Yeah. Kind of naive.

    I started supplying free articles on ME/CFS to EmpowHER, the women's health and wellness website I would go on to write and edit for full-time.

    The reception I received was so welcoming and encouraging, and writing about the things that I needed so badly to express was so therapeutic, that my words poured from fingertips to keyboard like rivers.

    This led me to start my website Ncubator, as the torrents of words kept flowing for weeks and months.

    I met many amazing people online through Ncubator, EmpowHER, and then through Phoenix Rising after joining the forums. In my naïveté I would send emails full of the things that worked for me, expecting the same results to happen for the sick people I was writing to.

    It was a shock to hear over and over that many of these things had already been tried without success.

    As I mulled this over, I saw in a new light that this illness takes many different forms, and what works for one may not work for another, in fact it might make them sicker.

    The low carb diet that helped me so much was no good for a lot of people I talked to. Some couldn't handle meat or fat at all. Others did best with a more vegetarian or heavier carb approach that would have left me in the dust. Live and learn.

    I'd have said I knew how enormous and daunting this monster illness was, but after this experience I was struck by the fact that if anything it was bigger and more malevolent than I had previously realized.

    I also saw that as sick as I had been -- unable to think or communicate, unable to get out of bed, or use crippled hands and arms, or make my fingers work -- there were people who were sicker than I had ever been.

    And as poor and as isolated as I had been, there were other folks who had less money, fewer resources and less help than I had had at my worst.

    Some had no homes, due to financial reasons, others because their chemical sensitivities made it impossible to live inside. Some were too ill to go out of their homes, others were too sick to be able to go into one.

    When my son Jesse got sick, most of the things that had helped me to creep towards health seemed to do nothing at all for him. His path has been slower and harder than mine was, despite the experience I'd already had for years before he fell ill.

    I used to call ME/CFS my mystery disease, during the early years when I had no idea what I was dealing with or how to deal with it. Now I saw that no matter what I called it, this mystery disease presented itself in so many different forms, and responded -- or didn't respond -- in seemingly contradictory ways from one patient to another.

    Mind you, there were other people who I talked with who did find relief through some of the things I suggested. I was always surprised and pleased when this would happen.

    ME/CFS is a beast and seemingly a chameleon to boot. But we will beat it. We will continue to learn about this illness, ideally with help from scientists and doctors who are in our corner.

    Maybe one day we'll even get help from some of the people in high places who have never been in our corner but who will eventually knuckle under to pressure to finally care for the sick. Hey. It could happen.

    Meanwhile, we will continue to share our stories with each other, listen to each other, and pass on the things that help us heal, knowing that some of this will make a difference.

    And even when the solutions have not been found for this person or that one, for this symptom or that, we will continue to be there for each other. Even when all we can say is that it sucks, and that we are thinking of them, we are making a difference for each other.

    At least for those of us with the good fortune of being online, Phoenix Rising has been doing all of this, to the best of all our abilities as we try to make each others' lives better, as we try to lift the fear and the heavy weight of this beast of a disease. The isolation and loneliness, living outside the camp in the wilderness, is lessened, becomes easier to bear.

    We may not always know what to suggest to a sick friend. In fact maybe most of the time we won't know what to suggest. But the fact that we care enough to try, and respond to each other with care and consideration, makes a difference. One that not too many years ago didn't exist for many of us. Including me. And probably including you.


    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

    And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

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  2. Cheesus

    Cheesus Senior Member

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    When I first got ill, my GP - who is no expert in CFS/ME - told me that the the word 'syndrome' was applied to indicate simply a collection of symptoms at which people arrive from all sorts of different directions. This has stuck with me and is validated in my mind every time I see the heterogeneity of the illness: from symptoms, to severity, to treatments, to prognosis.

    Maybe 'ME' is one solid thing as people claim, but what I see generally is a lot of people suffering deeply in a vague, grey area of illness - sharing some commonalities with others but all unique in many ways. Taking another's story and applying it to myself is useless under these circumstances.

    Good article :thumbsup: and I am pleased to hear you are doing well.
     
    AbbyDear likes this.
  3. soofke

    soofke

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    Dutchy
    @ least to you they listen ;(
     
    Last edited: May 5, 2014
    Izola likes this.
  4. Dreambirdie

    Dreambirdie work in progress

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    Thanks Jody for your honesty and clarity. I always enjoy your articles.
     
    aimossy likes this.
  5. Jody

    Jody Senior Member

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    Yup, we're a big old, messy grab bag of symptoms, every bag is different.:)

    Thanks Cheesus.
     
    Cheesus likes this.
  6. Jody

    Jody Senior Member

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    Don't let it get you down when people don't take your suggestions soofke. Everybody's dealing with their challenges the best they know how. :)
     
    Izola likes this.
  7. Jody

    Jody Senior Member

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    Thanks db.:)
     
  8. aimossy

    aimossy Senior Member

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    Refreshing read!
    Thanks Jody.
     
    Izola and rosie26 like this.
  9. Jody

    Jody Senior Member

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    Glad you enjoyed it, aimossy.:)
     
    Izola and aimossy like this.
  10. Sing

    Sing Senior Member

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    I appreciate how you show caring for people and remind us of its value. Yes, isolation, being out there and failing with ideas for treatment--I have had all those experiences often. These forums have helped me greatly to have a sense of other people who understand from the inside out what it is like. I have gained in confidence to claim my reality with this illness. That has helped with medical people. Not only have I gained a foothold with them, they have stopped their denying, patronizing, minimizing, projecting and misinterpreting me and my experience. When you are isolated, it is hard to claim your reality. We are such social beings--that is just how it seems to work. So even when we can't find or offer each other effective remedies, we do offer and can find this precious support. This strengthens us for the battle and can bring joy through the sharing.
     
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  11. taniaaust1

    taniaaust1

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    I think that is what I like about your articles the most Jody, your honesty.
     
    Izola likes this.
  12. Marco

    Marco Old blackguard

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    Well said!
     
    Jody likes this.
  13. Izola

    Izola Senior Member

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    The CDC changed the name Myalgic Encephalomyelitis to "chronic fatigue syndrome" and strung a mishmash of symptoms with their privately stated hope and understanding that a lot of other illnesses including depression, would end up in the bag diluting the symptoms of M.E. in research samples and in doctor's minds thus never getting research nor treatment traction.

    Using the word "fatigue" was their big joke. Who would respect a disease with "fatigue" in its name? And Syndrome? They knew as we all found out that it was a bunch of symptoms strung together, not a delineated disease. They also knew that the whole combination of the name and the dilution would tag us as mental and lazy.

    Their "How to hide an epidemic in plain sight" worked for almost 3 decades. Hey, it's still working. Now things are so complex with all of us smudged together under one name it will take another Einstein to untangle the web.

    Their sick joke is a major major part of the IOM/HHS debacle. Lay people, with the big nudge from greedy shrinks think we are nuts. And probably so will the majority of the IOM panel. Won't it be dandy when all many can get is anti-depressives and exercise?

    Hopefully things have progressed far enough, thanks to our experts, and all you brilliant biochemists and microbiologists that it won't be that bad.

    The CDC guys had years of chuckling about the wool they pulled over the world's eyes. Our experts stuck with us, knowing what had been done and narrowed the research cohorts in much of their research as best as they could.

    But for our experts, genius patients and the few blinded kind physicians who help us we could be at the turn of last century, not this one.

    We are not all of one disease, but in many ways the similarities are more fascinating than the differences. In truth, we need sorting for everyone's benefit. Imagine all of us who may have one simple little thing to fix but it was overlooked because of all the misguidance given out by the CDC. And all the opportunities for a cure or at least a reprieve because of the CDC's and HHS's games and the FDA's failure to fund. 20%of nothing is still nothing. Let us hope that we get something.

    "Osler's Web" by Hilary Johnson is a very very good read. The best researched and written investigative Journalism of last century. [But with a nod to Edward Humes on Matamoris -- (don't ask,)]

    Thank you Jody for lightening my heavy heart. You make me :):D:).

    How did I get here from there? :(;):);):(:bang-head: Iz
     
    Last edited: May 6, 2014
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  14. Jody

    Jody Senior Member

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    Sing,

    You said, "When you are isolated, it is hard to claim your reality." That says it so well. Sounds like you could write an article on that.:)
     
  15. Jody

    Jody Senior Member

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    Thanks Taniaaust1.:)

    On another note entirely, what came into my head as you credited my honesty was, "You can't make this stuff up." :) Well, maybe somebody could. But why would you?

    It's nice to have a place to come with my words and my thoughts and have them heard and received. For so long, as I'm sure it is for many of us, nobody was interested in what I was thinking, or experiencing. So ... thank you for caring. :) All of you.
     
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  16. Jody

    Jody Senior Member

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    Yep, Izola,

    All that is true. It is a heck of a life to get stuck with. None of us expected to end up chained to this mess that's for sure.

    I suspect that I would be one of that minority you mentioned that had a few things that could be treated -- all evidence seems to indicate that, it's been naturopathy in the main that's been helping me find my way out. But having been thrown in the garbage can marked CFS ... well that could have been my demise right there.

    Mind you, in my case, conventional medicine just wasn't offering any workable solutions anyway. That's one of the other flip sides to all this misery. For some of us, those who are similar to me, a few acupuncture needles, a few supplements, a change in diet, some chiropractic ... no matter the diagnosis (or lack of one) conventional medicine was never going to offer me those things that apparently I needed to start to become well.

    If I've helped to lighten that heavy heart of yours, I am also :):D:).
     
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  17. liverock

    liverock Senior Member

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    When I first found PR some years ago it was so refreshing to have somewhere to go where people were pouring out their stories, thoughts and emotions probably to fellow sufferers for the first time.
    What a relief it was to talk to others with this wretched disease without getting the feeling that people were secretly thinking " well you dont look ill'

    Another thing that struck me was how I was made to feel at home by someone who appeared to be the 'Head Greeter', sending out individual welcoming messages, commiserating with those who were feeling low, remembering peoples birthdays by sending them a cheerful message and last but not least directing people to the 'Burnout Bench'.:)

    For those who have been here from early days you will recognise of course it was Jody.

    I thought at first she was someone who was in good health and was just helping out. When I read her story of course it soon became apparent that she was far from being well, which amazed me that she put so much into the life of the forum whilst being so ill.

    So Jody.. thank you for all the people you have helped here since those early days by your work and writing, which has helped so many by putting into words their thoughts and always giving them a positive vision. Keep those articles coming! :hug:
     
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  18. Jody

    Jody Senior Member

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    Aww, how darned sweet is that, Liverock.:)

    I read it to my son and husband and we all three teared up over it.

    Thank you.:)
     
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  19. Izola

    Izola Senior Member

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    You are a heart lightener! I am so happy you do not have M.E. I understand you have been lightening hearts for eons. Bless you child, well, woman. :angel::angel::angel::hug::angel::angel::angel:

    I don't really carry a heavy heart, just heavy problems. I'm the one who goes about occasionally yelling, "Hey, the King has no clothes!!"

    While jn practice I got a lot of, "Hey, we can't do that." and me responding "I just did." I got a lot of attaboys afterwards, but not much money! The memories are wonderful.
     
    Last edited: May 7, 2014
  20. This is a wonderful article and puts into words exactly how I am feeling right now having dramatically and suddenly improved (which has allowed me the energy to really delve deeply into this site).

    The more time I spend here, the more I understand the set of "CFS" shot ones to be the body's expression of discontent in the face of not one, but many illnesses.

    I am humbled by the stories of others who have suffered in ways I didn't, and to degrees I cannot imagine...

    I can say I know what is "working" for me... I do know what I am doing and what coincided with improvement. But the ascent to wellness mirrors the dr cent to illness in that it accelerates. Amazing things start to happen quickly when you have the energy to feed yourself, I NEVER in a million years though I would be able to build physical condition through activity.

    Acceptance has been crucial for me too. And I'm stubborn as hell so I come very late to the acceptance party.

    I know that what I'm doing/taking isn't the answer for you all. But I also know that I do really want to help and serve other people who are ill with these symptoms. As my energy increases, I wonder-- what can I do for you?
     
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