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What other disabling illness / defect would you rather have?

Dr.Patient

There is no kinship like the one we share!
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505
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USA
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.
 
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CFS_for_19_years

Hoarder of biscuits
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2,396
Location
USA
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.

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:

 

Gingergrrl

Senior Member
Messages
16,171
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.
 

cman89

Senior Member
Messages
429
Location
Hayden, Idaho
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
 

cman89

Senior Member
Messages
429
Location
Hayden, Idaho
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
 

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
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
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.
 

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
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.
I did think about no legs and wheelchair. I'd rather take this permanently, than a permanent CFS.
 

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
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.
 

CFS_for_19_years

Hoarder of biscuits
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2,396
Location
USA
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.

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.
 
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Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
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.

The longer you are sick, the easier it is to let these thoughts just drift away and then refocus on something else.

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...
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
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...

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/
 
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chipmunk1

Senior Member
Messages
765
http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome

A 2006 review found that there was a lack of literature to establish the discriminant validity of undifferentiated somatoform disorder from CFS. The author stated that there is a need for proponents of chronic fatigue syndrome to distinguish it from undifferentiated somatoform disorder. The author also mentioned that the experience of fatigue as exclusively physical and not mental is captured by the definition of somatoform disorder but not CFS.[94] Hysterical diagnoses are not merely diagnoses of exclusion but require criteria to be met on the positive grounds of both primary and secondary gain.[95

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

Ouch.