Hope deferred ...

[Jody]

Hope deferred makes the heart sick.

Thoughts?

 

[CBS]

Hope!

Hope deferred makes the heart sick.

Thoughts?

Actually, I'm feeling as hopeful as I have in years. The interest in XMRV is unprecedented and a large number of major labs are "feverishly" working on this everyday. Don't know that we've ever been able to say that.

Still, lots of questions. It's important to get this right. I'd be crushed if I had persevered through the last 16 years just to rush into a treatment that did more damage than good (and not necessarily because it was the wrong treatment but perhaps the wrong dose or that it needed to be given in combination with something else). I can wait for some answers. Knowing that answers are on the way makes it more bearable.

Expectations haven't been realistic. We're a desperate group of patients. That's understandable, it's also a combination that can lead to despondency in the face of real progress.

That said, I see lots of reasons for hope.

 

[kurt]

Hope deferred makes the heart sick.

Thoughts?

I like the rest of that verse: "But a dream fulfilled is a tree of life."

There is so much wisdom in Proverbs.

Thoughts...the heart has many hopes, if we focus just on the ones not fulfilled at the moment the spiritual heart can become very sick. So I think it is important to always have some good things in our lives, some realistic hopes to focus on, things that can be realized in our lives. We need some yang for all the yin. Especially with CFS and all the unknowns and uncertainties, we need balanced lives now more than ever.

Among our hopes should be some that we know can be fulfilled.

 

[kurt]

Something that is giving me hope right now is the realization that a new age is dawning in human genomics testing. Within a year or so full genomic profiles may become an affordable commodity item in medicine. Currently that costs $50,000, some companies say they will get the cost under $1000, one says $100. This could spark an explosion in disease research. Maybe some completely new answers will emerge for us, as well as people suffering from other diseases. More understanding of the role methylation, immune dysfunctions, stress-handling, other inborn genetic errors.

There will also be full pathogen profiling in the near future, in other words, doctors will have tools that allow them to take a sample and affordably sequence whatever is there. Then find the pathogens by their genomic profile. So all co-infections could be found, not just the ones that are suspected and tested for specifically. Probably many bugs will be found that we know little about at this time.

There are some amazing times ahead. I think ME/CFS may be a good test case for some of these coming genetic technologies, researchers will need to make a splash with their new tools, and what better way than solving one of medicine's greatest mysteries?

A balancing hope.

 

[Greggory Blundell]

DH Lawrence

All very true. But there is something to be said about pushing aside the hope just as a measure of prudence: "I never saw a wild thing sorry for itself." We are in many respects wild, just not its literal meaning. Just saying...

 

[Sam Carter]

Hope deferred makes the heart sick.

Thoughts?

Hope deferred is still hope. Not much, maybe, but better than no hope at all.

 

[glenp]

Makes me "sad" But, it makes me happy that they cannot shut us up this time like they did with Dr. Frietas, we have the internet it will happen just maybe not in some of us older ones time.

glen

 

[Tammie]

hope by definition is deferred......but I know what you mean

I think I would say that being sick for so long can stretch hope quite thin in some ways (at least hope for this life), but most of the time I do feel that it has really strengthened the hope I have for eternal life

 

[BEG]

it will happen just maybe not in some of us older ones time.glen

At 59 (gasp, it can't be!), like glenp, I don't have hope that I will be well again. Yes, I believe there may be treatment sometime during my lifetime, but the cost at first will be prohibitive. Also, by that time I may finally feel like my real age, anyway. I have hope for younger people including my daughter who is ill, and I have hope for my granddaughter that this scourge will only be a brief mention in medical books because it will have been eradicated. That's my hope now; it's not deferred, and I'm not heartsick.

 

[ixchelkali]

...but a dream fulfilled is a tree of life.

My hope isn't exactly deferred, it's just beginning. I don't expect to see concrete, tangible results soon. We are waiting on government agencies and academia, and they typically make glaciers look like Indy cars. Once we have answers, treatments will need to be tested, then treatment recommendations made, and for me, then they will have to trickle down to the insurance plans to the doctors. So I'm settling in for a good long period of hoping. If I'm wrong and things move more quickly, then hoorah!

But in this case, the dream fulfilled will truly be a tree of life.

I don't know if treatment will come in time for me to recover my health, since I'm closer to old biddy than Spring chicken. I hope it does; there are many things I'd still like to do that are beyond me now. But if nothing else, I will have vindication, and the knowledge that you younger ones will have a life. Perhaps one day there will be a vaccine, and people will learn about us as they do now about the people in the polio epidemics, and they'll shake their heads in disbelief at the things that were done to us by supposed scienctists. Maybe they'll learn something from us that will prevent the next great scourge from happening.

I guess I have a lot of hopes that aren't deferred as long as I'm still hoping them.

I also have private hopes that I hold on to. If I can't get completely well, I hope I can get better. I'd like to be able to work in the garden again. I'd like to meet my grandson. I'd like to have some chickens one day, and a dog. I'd like to get back out to the desert and see the stars. Okay, maybe hope deferred DOES make the heart sick, because as I think about these things I am starting to feel heartsick. I think I'll put off hoping for them a little longer and enjoy what I have today. There's a bright, clear blue sky outside my window, and a sea breeze is keeping the temperature just about perfect. A few late-blooming California poppies are bobbing in the breeze. My husband and my cat are both napping, and I feel well enough that I think I'll be able to cook dinner tonight. Life is good.

 

[Woody]

At 59 (gasp, it can't be!), like glenp, I don't have hope that I will be well again. Yes, I believe there may be treatment sometime during my lifetime, but the cost at first will be prohibitive. Also, by that time I may finally feel like my real age, anyway. I have hope for younger people including my daughter who is ill, and I have hope for my granddaughter that this scourge will only be a brief mention in medical books because it will have been eradicated. That's my hope now; it's not deferred, and I'm not heartsick.

I couldn't have said it better. I'd like to do something to make it happen for the next generation, letters, signatures, ... If help comes sooner, that would be great, at 56 maybe I'll see some of initial treatments. I'm just making the best of this DD that I can, and finding something good in each day. We may be suffering, but we can choose happiness.

 

[awdbawl]

@ the OP: in some cases, sick, yes, in other cases, stony (as in harden up so as not to shrivel up completely). I don't believe I'll ever get well again, as much as I wish I would, and as much as I tried all kinds of stuff for years (some of it rendering me permanently worse!!! :Retro mad. Ya just try ta make lemonade, that's all.:wheelchair:

 

[Daffodil]

i think i am now clinically depressed. i just lay there, staring. i have nothing. no degree, no job, no husband, no kids, no health, almost no friends, almost no family. what is left? this disease has taken it all. i am even too sick to leave the apt. to see a therapist.

the only thing that makes me feel hopeful - for about 2 min - is thinking there might be a cure. but you cannot cure a retrovirus, especially one that uses a receptor that is on so many cells. and then all the complications from decades of inflammation and infection.

i honestly do not know why i keep living. my life was impossible even before this disease.

i am sure i will get cancer and die in agony, alone, in a nursing home that smells like urine with a nurse ratchet, ruminating on what could have been and going insane.

i never even got to learn to horseback ride or play the piano and its already over

 

[Daffodil]

im really sorry for the above post. i will try to get a therapist and meds. i decided not to delete but if the moderator wants to, thats totally OK.

 

[zoe.a.m.]

Hi Daffodil,
I don't think you need to apologize, I believe you're just telling it how it is in the moment. With any luck, another moment will be better, but it's brave to be honest about how impossible every single part of life can be with this illness. It doesn't matter that it's not like that for everyone, it matters that it's like that for you and many others. I too feel overwhelmed by how far off (and how complex) therapy still is to treat ME/CFS, and that it could take longer than the time I have on earth for doctors to start treating this effectively. I'm really sorry that there isn't at least an acknowledgment of the moderate and severe cases by MDs so that you (and I, and others) could have a therapist or a helper or anyone we need come to us when it's necessary. It's not right. The injustice is insufferable at times--we don't have to be ashamed of that--and we can't help but use our voices to talk about it, it's what makes us human.

You're in my thoughts...

 

[awdbawl]

i am sure i will get cancer and die in agony, alone, in a nursing home that smells like urine with a nurse ratchet, ruminating on what could have been and going insane.

Daff, I am afraid of the same thing; I'd rather die from a quick heart attack, or stroke or aneurysm---anything but slowly rotting away in a nursing "home."

Hope you're feeling more encouraged soon.

 

[Stone]

I like the rest of that verse: "But a dream fulfilled is a tree of life."

There is so much wisdom in Proverbs.

Thoughts...the heart has many hopes, if we focus just on the ones not fulfilled at the moment the spiritual heart can become very sick. So I think it is important to always have some good things in our lives, some realistic hopes to focus on, things that can be realized in our lives. We need some yang for all the yin. Especially with CFS and all the unknowns and uncertainties, we need balanced lives now more than ever.

Among our hopes should be some that we know can be fulfilled.

How interesting! I was studying this very verse just last night, along with all the other verses containing the phrase "tree of life". When studying the underlying original Hebrew, I came to see something interesting. You may be aware that virtually all biblical Hebrew words contain a three letter 'root word'. Without getting too far into the linguistics, suffice it to say that this root word is used to make other semi-related words. So the Hebrew word for tree is "etz". The root word conveys the sense of supporting firmness, like a brace or a fence post or a staff. And the word for "life" when used in the term "tree of life" carries the sense of "to bring life, or to cause to live". So, if we were native speakers of Hebrew living in the time this verse in Proverbs was written, we would understand that "tree of life" means "a firmly supporting element that sustains life or causes something to live." Also in biblical Hebrew, often the word translated to English as heart (lev or leb), actually denotes the mind or the seat of reasoning as opposed to how we English-speaking Westerners typically think of the heart as the seat of emotion.

So the verse in Proverbs 13:12 literally means "Hope that is dragged-out makes the mind sick, but a desire that is on the way is a firm brace/support that sustains or returns life"

I find this to be true for me, especially in terms of how things sit right now in the state of the science of "CFS".

This concept of "tree of life" is very interesting to me of late. The term appears in the following verses in the Hebrew and Greek scriptures: Genesis 2:9, Genesis 3:22, Genesis 3:24, Proverbs 3:18, Proverbs 11:30, Proverbs 13:12, Proverbs 15:4, Revelation 2:7, Revelation 22:2, Revelation 22:14, Revelation 22:19. I like the verse in Revelation that refers to the leaves of the tree (of life) that are for the healing of the nations. Hmmmm.
,
Also, the book of Proverbs is great for me when I'm tired or having brain fog because most of it is in little, one or two sentence capsules and I don't have to try to remember all the context. It's in little bites that are all I can chew at certain times. Great for people with ADD, too, because Proverbs changes themes and subjects frequently, almost from sentence to sentence.

Have a happy.

 

[leela]

Daffodil,

I know these moments, these thoughts. I believe it's important to recognize that they are a natural response to this ongoing, seemingly endless stream of days and nights of
suffering by degrees. No one can smile all the way through this. No one.
Just as important to recognize, though, that there are other thoughts, and that one can never be *sure* of anything, especially Nurse Ratchet!

So please know that most of us have all kinds of moments, and that we don't ever have to stick with any of them, or stick them to us as our identity.

I have just been perusing a book with kind of a stupid name: "The Mood Cure", which can be procured online used for cheap, that despite its silly name offers a great description of all the neurotransmitters and the effects they have on our energy, thoughts, moods, and outlook. It's pretty great for getting "off the hook" for all the dark clouds, or the dead seas, or the worrywarts, or the supersensitivities. We PWCs have these all out of whack, I think, what with the Neuro Endocrine Immune situation. In the book, she helps you figure out which supplements might help for quickly and easily shifting the state of affairs.
You can even take the mood type questionnaire online (and I suspect PWCs are off the chart for all four types!)
http://www.moodcure.com/Questionnaire.html
See if that looks interesting and tell Nurse Ratchet to get stuffed!

 

[leela]

As for Hope, this man is fascinating to listen to, and he is doing work that I believe could offer us hope to be really really better--as long as he can sequence all the pathogens
we suffer from. He's the inventor of PCR by the way, and a lovely humble man.
http://www.edge.org/3rd_culture/mullis10/mullis10_index.html