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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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What other disabling illness / defect would you rather have?

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
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/
Thank you, appreciate it very much!!!
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
I think what everyone wants is to get rid of this illness, they want to get better!

Of course! Who doesn't want that, Hopefully with the right treatments and approach people get that too! It is just that when you try to push things away like illness it comes back stronger. Not to say the illness but resistance to what is happening, then you get in a vicious cycle because you are going against what is. So having an unconditional, and radical acceptance, while also moving in the way to good health is key. At a certain point you just move beyond the idea of even accepting/not accepting something going on. Simply seeing things without a label and just moving in the whatever direction is called for.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
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'd probably rather be blind or death then have ME like I do, at least then I'd have still a mostly functional body. With my ME at times I do loose my vision.. to completely blind state (sometimes completely just before I collapse), other times I have blurred vision (esp if very exhausted). I went a very long time (more then a year.. maybe a few, where I couldnt read a book in bed). So thou that's not blind and doesnt at all compare to being permanently blind.. the ME does affect my eyes (thou currently that has been fairly good of late except some mild blurred vision)

Ive had to worry about being blind due to ME! Last year during a special scan on my eyes for a CFS study, my scan showed my optic discs were swollen.. that can cause damage and for someone to go suddenly blind. When I looked up the causes of this.. high BP was one of them. I have severe orthostatic hypertension with the POTS caused from the ME (my BP can go up over 190 after 1min of standing.. and my dystolic can go up to 136).

When I then got refered to the specialist, he couldnt find an issue on the day.. I think its cause my BP was okay at the time (it changes) so he ended up dismissing my scans that said my eye discs were swollen , he said t must of been the angle the photos got taken on. So that's worried me as he didnt believe me when I said my BP does go very high.

ME has given me central auditory processing disorder too (CAPD) so that is like having hearing issues at times as my brain can be scrambling sounds so at times I havent been able to pick out the voice of someone speaking to me. Thankfully the CAPD has been good or okay for me lately but for years with the ME it was very bad. ME has at times caused me to loose my ability to speak or understand another (in a different way to what the CAPD does to me).

So in my case I would maybe prefer to be blind or deaf if I was going to be healthy in all the other ways. Just feeling "well" and feel "energy" which one can use, would be so great.

At times Ive wished my ME was cancer as then maybe I'd have more chance of treating it and maybe recovering and better still at least then people would have more understanding when I said I wasnt well at all rather then dumping all these expectations onto me of things Im arent managing to do cause of the ME.

Those with other illnesses usually get far better treated then ME people, we just get constanly discriminated against to the point where its made me feel suicidal. So yeah I'd rather have cancer.

anyway, I wish I had a more easily probably treated condition or a condition in which I felt good and well rather then crap whenever I try to do anything (which is so cruel). I'd trade this for an illness in which one isnt treated so terribly. (Ive been left to die at one point).
 
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Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Before I had a diagnosis, I developed sudden and unexplained tinnitus. One possibility that had to be checked out was a brain tumor. I was hoping there would be a brain tumor so that it could be removed and I would feel better.
 

chipmunk1

Senior Member
Messages
765
I love this. "Radical acceptance" is a fabulous way of putting it.

The term Radical Acceptence seems to be closely related to some behavioural therapies and to psychology general.

http://en.wikipedia.org/wiki/Dialectical_behavior_therapy
http://blogs.psychcentral.com/mindfulness/2009/09/radical-acceptance-an-interview-with-tara-brach/

Psychology is often incorporating elements of Buddhism (stuff like "Mindfulness") in their treatment strategies in the past decade. Now the idea seems that we are no longer trying to just change someone behaviors but we are also trying to make them accept their situation as it is. These approaches are called the third wave of behavioural psychotherapies.
 

Min

Guest
Messages
1,387
Location
UK
I would prefer the sort of so-called ' M.E.' that those who have recovered by GET, CBT, pacing, LP, Chrysalis effect, NLP , Reverse therapy and other psychobabble say they had.

The 30 year long neurological illness myalgic encephalomyelitis that I do have does not appear treatable, not that any doctor in my country has ever tried to treat it or even asked what my symptoms are.
 

chipmunk1

Senior Member
Messages
765
Mindfulness and acceptance sounds good, but somehow I think the psychobabblers will manage to twist it into the usual horrific quackery that serves their needs and not that of the patient.

could happen..

Therapist today: You need to accept that you are not ill then your symptoms will get better.
10 years from now: You need to accept that you are ill then your symptoms will get better.
 

SDSue

Southeast
Messages
1,066
The term Radical Acceptence seems to be closely related to some behavioural therapies and to psychology general.
@chipmunk1 - great point. This is where it gets tricky. I will never talk to a doctor about acceptance, as that insinuates a somatoform component to my illness. I have fought too long and hard to be taken seriously.

However, while overall abhorring psychobabble, I have found Kubler-Ross's model of grief to be quite descriptive of my personal process of accepting ME/CFS. It was a long road to acceptance, and the kind of acceptance I needed was radical. How else does one accept this purgatorial life?

The more I can stay in acceptance, the better off I am. Denial had me pushing my limits and crashing severely and often to the point of being bedridden; Anger took a lot of energy and left me miserable; Bargaining cleaned out my bank account as I searched in vain for that one magic pill; Depression left me with no will to live like this any longer.

That said, I do often wish I had a different disease. I walked a dear friend thru liver cancer (liver cancer!) several years ago. She was treated with respect by everyone from doctors to insurers (insurance even approved massages to deal with the stress) and family to community. She's alive, well, and thriving. I, however, still languish with no real hope in sight. Would I trade places? Absolutely.

And if I dwell on that too long, I'll be right back in the anger phase!
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Having an open ness and acceptance is for all aspects of life. If people try and take advantage of words to twist logic you lose the purpose. the written language can be manipulated but the understanding behind what the right attitude means doesn't need to even be said. Acceptance is an attitude, not a behavioral coping technique, or mantra. It is just about un attaching yourself from the mind, being at peace even in the middle of the biggest storms. You don't worry or think about past or future, just be allowing of this moment and whatever it holds. That is all there is to it, allowing everything to be exactly how it is here and now. Anything else is just a projection of your mind, since the present moment is the only thing there actually is.
 

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
Before I had a diagnosis, I developed sudden and unexplained tinnitus. One possibility that had to be checked out was a brain tumor. I was hoping there would be a brain tumor so that it could be removed and I would feel better.
Strange, I had constant pulsatile tinnitus in my ear for more than a year. Later, I had this cfs, and since this relapse in 2012, I noticed that the tinnitus disappeared, mysteriously!
 

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
@chipmunk1 - great point. This is where it gets tricky. I will never talk to a doctor about acceptance, as that insinuates a somatoform component to my illness. I have fought too long and hard to be taken seriously.

However, while overall abhorring psychobabble, I have found Kubler-Ross's model of grief to be quite descriptive of my personal process of accepting ME/CFS. It was a long road to acceptance, and the kind of acceptance I needed was radical. How else does one accept this purgatorial life?

The more I can stay in acceptance, the better off I am. Denial had me pushing my limits and crashing severely and often to the point of being bedridden; Anger took a lot of energy and left me miserable; Bargaining cleaned out my bank account as I searched in vain for that one magic pill; Depression left me with no will to live like this any longer.

That said, I do often wish I had a different disease. I walked a dear friend thru liver cancer (liver cancer!) several years ago. She was treated with respect by everyone from doctors to insurers (insurance even approved massages to deal with the stress) and family to community. She's alive, well, and thriving. I, however, still languish with no real hope in sight. Would I trade places? Absolutely.

And if I dwell on that too long, I'll be right back in the anger phase!

A relative of mine who's in her late 50s now had pancreatic cancer, and underwent Whipples, and chemo, and all that 8 years ago. Though she had a difficult initial period, for the last 5 years or more, she has been back to vacationing internationally- Europe, South America, etc... I am happy for her, and glad that she is better! Would I rather have what she had? Yes!
 

JAM

Jill
Messages
421
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.
I recently had an acquaintance go through treatment for breast cancer. She had so much support, and her symptoms were less severe. She is now fully in remission and back to work full time. I felt jealous; of the support, the knowing what the treatment was and when it would end, all of it. It made me feel so guilty for feeling that way. But goodness knows a meal train, random packages from friends and relatives, and visits from friends would make my life so much easier. Most of my friends and family either don't understand my illness, or think I am just trying to get attention.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Strange, I had constant pulsatile tinnitus in my ear for more than a year. Later, I had this cfs, and since this relapse in 2012, I noticed that the tinnitus disappeared, mysteriously!
Unfortunately, mine is still with me some 20 years later. Fortunately, I have some things that keep it to a low level and am not much bothered by it.