Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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What other disabling illness / defect would you rather have?

Discussion in 'General ME/CFS Discussion' started by Dr.Patient, Oct 29, 2014.

  1. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Yesterday was a bad day, and I kept thinking... if not this CFS/ME, what would I rather have...I don't want quadriplegia, not AIDS. I don't want to be blind. Or deaf.
     
    Last edited: Oct 29, 2014
  2. Martial

    Martial Senior Member

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    Why change the present experience? It simply is what it is.
     
  3. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I think of diseases and "who is going to get what" like a lottery - some have better or worse luck than others.

    I try NOT to think of other diseases. Contemplating the ones I have is bad enough. When I'm having a bad day I try to get out of my head and look at art in books or online or listen to music.

    When you said I don't want to be blind it made me think of this Etta James song:

     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    No offense to anyone but this is kind of a strange thread and I try not to compare who is suffering the most or that one illness holds the monopoly on suffering.

    I think for us the problem is the lack of funding for research and we are given no acknowledgement of our suffering compared to other illnesses. But I try not to compare myself to the actual sufferers.
     
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  5. worldbackwards

    worldbackwards A unique snowflake

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    I think I'd quite fancy hay fever.
     
  6. cman89

    cman89 Senior Member

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    I find this very interesting, because we need to both be cognizant of what we deal with on a personl level and address it, but also be thankful for what we dont suffer from. I for one would rather not be blind, for sure, and I am really glad I dont have one of the nasty genetic illneses like FFI or Ankylosing Spondylitis. And ALS aint that fun either
     
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  7. svetoslav80

    svetoslav80 svetoslav80 at gmail.com

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    This "exchange" would be a hard decision but I think I would feel more alive even without two legs rather than my current illness. Not to mention that then everyone would acknowledge my disorder.
     
  8. cman89

    cman89 Senior Member

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    Well there is the issue of both severity and availibility of treatment. A severe condition that has defined and effective treatment can often be preferable to less severe but less treatable
     
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  9. justy

    justy Donate Advocate Demonstrate

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    My illness is both severe and untreatable.
     
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  10. xrunner

    xrunner Senior Member

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    We all deserve full health. Nothing else.
     
    Last edited: Oct 30, 2014
  11. halcyon

    halcyon Senior Member

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    I'd rather have yuppie flu.[/sarcasm]
     
  12. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    My cousin underwent high risk neck surgery for cervical stenosis, and suffered from severe pain for months, now he's a little better. Yes, there were risks of death during surgery, or paralysis after surgery, but I think I'd rather have that than this. His diagnosis is defined clearly on MRI, there is a definite treatment, people believe his pain, and I would rather take a very acute, high risk situation, than this slow, agonizing life.
     
  13. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    I did think about no legs and wheelchair. I'd rather take this permanently, than a permanent CFS.
     
  14. Strawberry

    Strawberry Senior Member

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    Maybe breast cancer. That is easy to treat and has good survival rates. And maybe they would put something in there for me! :D Also people then would understand my fatigue.
     
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  15. Martial

    Martial Senior Member

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    Interesting to see how many posted about wanting to have recognition and understanding for their condition, being taken seriously for what they are dealing with. I would guess this is almost like a central theme here.
     
  16. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I'm going to take another stab at this: When I find myself having thoughts similar to yours, I wonder if I'm depressed and I wonder if ruminating on these types of thoughts does me any good. Usually the answer is yes, I'm depressed and yes, ruminating doesn't do any good.

    So I try to stop the rumination by changing activities to something that isn't linear or verbal (the left brain vs. right brain thing). I choose activities that don't take much brainpower cuz we know that's on short supply! I choose music and art (or anything visual) as a means of distracting myself from repetitious negative thoughts. Even a cheesy TV show can be enough distraction.

    Your mileage may vary, but now you know how I handle these types of thoughts. The longer you are sick, the easier it is to let these thoughts just drift away and then refocus on something else.
     
    Last edited: Oct 30, 2014
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  17. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Thank you very much for this! This is really great advice!!! I'm gonna start thinking about distraction, and also will start thinking that these feelings are going to fade away slowly...
     
  18. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    I think what everyone wants is to get rid of this illness, they want to get better!
     
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  19. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I wasn't sure if you would find my advice helpful or not - I'm glad that you found some nugget you could take away.

    I think we notice these types of thoughts because these thoughts are new to us, sort of like when we have a new car, we think about the car a lot, but once the car has been in our driveway for a month, the car is no longer new and novel. Once you've had the same repetitious thought several times it becomes less meaningful, like the car that has been in the garage for a month.

    This reminds me of something that happened in an informal support group. A group of us (maybe five or eight persons) decided to take a walk of several blocks, nothing too taxing for most of us at the time. Someone tripped and she let a few *$&$@@ words fly, then she kept shaking her head, like it upset her. Another person who had been sick much longer said something along the lines of "You'll get used to it, it's OK."

    You might say to yourself "That's an interesting line of thought" when you have these thoughts, and then let them go if you can. Some thoughts may resurface.

    I don't know if you would find the following books helpful, but you can see for yourself:

    How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers
    www.amazon.com/How-Sick-Buddhist-Inspired-Chronically-Caregivers-ebook/dp/B00440D81K
    Written by a law professor who has CFS/ME; more articles that expand on her book are here:
    http://www.psychologytoday.com/blog/turning-straw-gold

    The Undefeated Mind: On the Science of Constructing an Indestructible Self
    http://www.amazon.com/Undefeated-Mind-Science-Constructing-Indestructible-ebook/dp/B009NW9NYU
    Written by a healthy Buddhist physician
    The author also has a web page http://www.happinessinthisworld.com/
     
    Last edited: Oct 30, 2014
  20. chipmunk1

    chipmunk1 Senior Member

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    http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome

    I think this means they think we have somatoform disorder because our primary and secondary illness gain is so large.

    Ouch.
     

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