A Brutally Honest Thread? * Possibly Not for the Faint of Heart

[David Jackson]

First, will just say that I’m not trying to imply anything here; it’s the middle of the night, I couldn’t sleep, and a thought just came to me which I wanted to share here, and get some feedback and perspective on from people who are no strangers to suffering, and that have spend considerable time contemplating. It hit a nerve in me, and sounds a lot like something I’ve been trying to turn and face for a while now… but I want to hear other opinions:


In the latest Mad Max film, Fury Road, there is one point where Max says to Furiousa, when she tells him she wants to try and cross the salt desert in search of a better place to live:

“You know, hope is a mistake. If you can’t fix what’s broken, you’ll go insane”.

The next day he stops them all just as the begin to ride out across the salt, makes them see that the green place is really back the way they came - something they already knew - and, although it would be a very difficult journey, that was the only way they’d get the redemption they were looking for.

I feel like each of us could probably write an essay about this concept in the film, and it’s relation to CFS… would be very interested to hear what people have to say…

 

[ljimbo423]

“You know, hope is a mistake. If you can’t fix what’s broken, you’ll go insane”

I haven't seen the movie but hope and determination have taken me from 80-90% bedridden to 4-6 hours a day of physical activity.

I also walk about 1/2 mile 2-3 times a week now, do 2-3 hours a week of karaoke on a karaoke machine I have and only need 8 hours of sleep a day, instead of the 12-14 hours I had to have before.

I had given up hope because I had gone to so many doctors and just got worse. That's when I became mostly bedridden for several years. I just reached a point where I felt like I couldn't live out my life like that and had to do something about it.

The thought that turned me around was "I found a way into this, there has to be a way out!" It was that thought that turned me around. I have spent thousands of hours reading and researching about possible causes and treatments for ME/CFS.

Most have not worked but some have. I continue to build on the ones that are working and looking for other new things that might work better.

That's my story, the short version.

Jim

 

[Kenshin]

That's a great film, I usually cant stand "action packed" movie's, but Fury Road is insanely watchable.

We are broken, but still here.
Is death anything more than the body "ceasing to move"?
How much do we care that we are confined to a bed our whole life, almost "ceasing to move."?
Pain means there's a problem, if the problem can't be fixed, just give me pain killers that work lol.

 

[hmnr asg]

I like to also say that I loved that movie. I saw it in the movie theater which i rarely go to and it really blew my mind. I watch a lot of movies but this was something else. There is only one more movie that make me break into a sweat (and that was a korean movie, Old Boy).
Anyhoo, i dont remember this scene but the line "You know, hope is a mistake. If you can’t fix what’s broken, you’ll go insane” makes a lot of sense.
I think it advocates for acceptance rather that resignation (and these two might sound similar, but there are subtle differences).

 

[Kenshin]

Not to turn this into a movie thread but "Heat" (1995) is one that had me break a sweat the first time I saw the bank job.
Both Heat and Fury Road are worth multiple viewings, Heat for the plot, Fury road for the scenery.
And Equalizer (Denzel Washington), of which the sequel is out soon.

 

[hmnr asg]

Not to turn this into a movie thread but "Heat" (1995) is one that had me break a sweat the first time I saw the bank job.
Both Heat and Fury Road are worth multiple viewings, Heat for the plot, Fury road for the scenery.
And Equalizer (Denzel Washington), of which the sequel is out soon.

We totally ruined this thread
PS I was watching the Rurouni Kenshin series for the 7th time this month. Is your name somehow related to that by any chance ?

And I second that Heat is a great movie also.
Haven't see Equalizer yet but will check it out.

 

[ahmo]

I've given up hope, and will. When I told a chiro this at my first visit, he seemed shocked. I try to live as much as possible in the present. Even though that means spending much of my day reading novels. I do what I can, manage symptoms, watch stand-up comedy regularly. Acceptance to some degree.

 

[sb4]

@hmnr asg Since you mention Old Boy (my favorite movie) I would like to throw out a different quote that I like from the book the movie drew inspiration (The Count of Monty Cristo).

The last line of the book book says “All human wisdom is contained in these two words - Wait and Hope”.

Although I prefer to say "Act and Hope". Sometimes waiting isn't enough. Through acting on my illness and not losing hope, I have gotten myself to where my days aren't in unbearable discomfort anymore and I can actually enjoy things. Also acting and seeing the (painstaking) improvements gives me further hope I can cure myself.

I understand if everything you have tried fails and you keep getting worse that "Act and Hope" might seem like ignoring reality but if you do lose hope and the will to act you have essentially given up.

You can never know if your condition is truly hopeless or not so you may as well always keep this positive mindset because without it you might miss an opportunity to make progress.

 

[pamojja]

Guys, almost feel ashamed to admit, but never seen the movies mentioned. Though there is hope now with ME/CFS I'll catch up. (..but first should get a TV set, otherwise that wont materialize)

What I did when still young and strong, was traveling to remote places and people, for example for 2 years overland through Africa from north to south. Obviously because once beyond a certain age, there wouldn't be hope to have such experiences then (OK, not really true. At times I do have the opportunity to watch TV, and then often do see those remote places now 20-30 years later again..).

But ended up with superficially looking the most hopeless people, the Buddhist Monk-meditators of Myanmar. You know, those who claim, everything would be impermanent. Which of course comes with a very edifying corollary: hope that even worst disasters run it's course, and pass again.

So it depends, better not to hope the impermanent to be permanent.

 

[ScottTriGuy]

2 things come to mind:

1. Depends what you're hoping for.

2. Hope = meaning

I've not given up hope on a complete recovery (Twice I've totally recovered and got back into full on triathlon training and racing).

Even if I don't completely recover, I am still making meaning in my life, and 'hope' to continue til the Grim Reaper comes or I choose to go.

 

[David Jackson]

Heat, right, I gotta check it out.

And, yeah, Fury Road blew me away as well. When I first saw it, I’d been watching so many lame movies, so I wasn’t expecting very much, but, by the time they got inside that massive sandstorm, with all those gigantic fire tornados and red lighting, I was like “what the hell am I even watching? This is beyond awesome!”

And now onto the more serious note:

I have a great deal of very lofty goals and aspirations which all require a 110% recovery.

After a bad health month in August, which has been a dose of reality, I’ve been wondering whether I should be more realistic about things. Perhaps I should start to settle on a life where I seldom get to leave the house…

That quote from Mad Max really encapsulated some of my recent thinking nicely.

However, it’s also true what Jim says about hope above; I’ve also made so much health improvement, striving against the odds.

Have been feeling this conflict going on in my mind. Thinking now that I’m going to regroup and push forward once again, aiming for 120% recovery. If I don’t make it, well, I’ll just go insane ;P

@ScottTriGuy, I was once a long distance runner - how on earth did you recover all the way back to triathlons - they are damn tough! Have you documented your recovery anywhere?

 

[Kenshin]

We totally ruined this thread
PS I was watching the Rurouni Kenshin series for the 7th time this month. Is your name somehow related to that by any chance ?

And I second that Heat is a great movie also.
Haven't see Equalizer yet but will check it out.

Yes, Kenshin the samurai, but It's been a long time since I saw the series, if you've seen it 7 times then you know it better than me. I also will check out old boy which I've heard of but not yet seen.

I feel this illness as a torturous prison, with seemingly no way out.
Is there a way out? Or will I rot here in the end?
Will I be able to unlock the door from the inside? Or will help come from the outside?
(Like Ron Davis, and other researchers, metaphorically either picklocking the door or blasting through the wall with a tank, depending on the treatment lol.)

 

[Mary]

You can never know if your condition is truly hopeless or not so you may as well always keep this positive mindset because without it you might miss an opportunity to make progress.

I think hope is sometimes too painful because when hopes keep getting dashed, it gets too hard to take. But I like very much the first few words of what you said above: "You … never know" - It's not hope exactly, but it helps keep me going out of curiosity, if nothing else. We don't know the future. Nancy Klimas' trials with GWI patients might contain the answer for ME/CFS. Ron Davis might pop up with the answer this fall. You never know.

So I try to keep an open mind, I guess I can't help hoping a little, but more I just keep reminding myself I don't know the future, who knows, it might be very good! (or not) But you never know, so this helps me to keep trying new things, like you have, and I have found some things that have helped, and if I had given up years ago, I never would have. It's just an attitude, but it can make all the difference.

 

[hmnr asg]

I think i have a unique perspective that I like to present due to my second chronic illness. In addition to my CFS, i have been blessed with having Trigeminal Neuralgia (TN). It is called the "suicide disease" because the pain is so awful and uncontrollable that many people commit suicide. The first time i experienced the shock of the pain of this disease it was like a huge switched turned on in my mind. Before my TN started i thought life couldn't get worse, CFS had crippled me and I had given up a very active life and a very promising career.
But then it came... and i realized: oh no! life just got much much worse!

The pain of TN is the worst pain known to man (you can google this). I used to visit the TN forum and women who had given natural births would compare it with TN and say that giving birth was a walk in the park in comparison. I dont go to that forum anymore because the level of distress and hopelessness is far more than here on this forum.

After my TN i missed the days of just having CFS and just laying in bed and listening to audible or watching netflix. This pain makes you want to kill yourself because you physically can not bear it, it is beyond anything you can even imagine.

Anyways, if someone has CFS and they are not severe, and they are not worried about becoming homeless or starve to death, the only thing thats making you feel hopeless is your expectations of what your life ought to be. I think the solution to that is "radical acceptance" (as Tara Brach would say) which is very very hard, but still WAY easier than dealing with TN.

Laying in bed and listening to audio books and just being groggy is not the worst thing in the world, until one's ego kicks in and reminds you about all the things youre missing out.

 

[Mel9]

I think i have a unique perspective that I like to present due to my second chronic illness. In addition to my CFS, i have been blessed with having Trigeminal Neuralgia (TN). It is called the "suicide disease" because the pain is so awful and uncontrollable that many people commit suicide. The first time i experienced the shock of the pain of this disease it was like a huge switched turned on in my mind. Before my TN started i thought life couldn't get worse, CFS had crippled me and I had given up a very active life and a very promising career.
But then it came... and i realized: oh no! life just got much much worse!

The pain of TN is the worst pain known to man (you can google this). I used to visit the TN forum and women who had given natural births would compare it with TN and say that giving birth was a walk in the park in comparison. I dont go to that forum anymore because the level of distress and hopelessness is far more than here on this forum.

After my TN i missed the days of just having CFS and just laying in bed and listening to audible or watching netflix. This pain makes you want to kill yourself because you physically can not bear it, it is beyond anything you can even imagine.

Anyways, if someone has CFS and they are not severe, and they are not worried about becoming homeless or starve to death, the only thing thats making you feel hopeless is your expectations of what your life ought to be. I think the solution to that is "radical acceptance" (as Tara Brach would say) which is very very hard, but still WAY easier than dealing with TN.

Laying in bed and listening to audio books and just being groggy is not the worst thing in the world, until one's ego kicks in and reminds you about all the things youre missing out.

TN sounds so absolutely horrible: my great sympathies to all those afflicted.

I have reached ‘radical acceptance’ and am always conscious of how much worse off some people are, including those with ‘just’ severe ME/CFS.

My Lyme pain is over now, leaving just moderate ME/CFS constant fatigue and PEM.

Spending days in bed but able to read and write is certainly not the worst thing in the world.

I am fortunate though to have had my career and family. It is psychologically much worse for young people I think.

 

[Vassie]

"You … never know" - It's not hope exactly, but it helps keep me going out of curiosity, if nothing else. We don't know the future. Nancy Klimas' trials with GWI patients might contain the answer for ME/CFS. Ron Davis might pop up with the answer this fall. You never know.

It’s just around the corner, right?
I try to live like that as well, dangling a carrot in front of myself.

 

[sb4]

@hmnr asg Wow, that sounds rough.

@Mary Yeah I totally agree that hope can be a killer. Some of the times I have felt the lowest was when I foolishly believed that this next treatment will have a big effect. It's hard not to when you read so much about it, see others experiences, and how much it links to your own condition. Then inevitably it does nothing and you feel like you will be stuck like this for a long time to come... until the next promising treatment.

I have gotten better at reigning in my expectations over the years but it is still something I need to get better at. I tell myself often in my head "there is a good chance this will do nothing like the vast majority of other treatments you tried" yet I still get too hopeful.

When I say "act and hope" it should come with a disclaimer that says "in realistic quantities". The idea is that if you do not act and have no hope (become jaded) then I think you will have a high probability of missing out on something that could help (or cure). The flip side to this is that if you act foolishly you can make yourself worse (or dead), if you hope too much you can become jaded.

Even if you are severe bed bound. Perhaps your action will be constant meditation and your hope will be that this phase passes or that someone outside will help. Better than giving in to it.

 

[Mary]

When I say "act and hope" it should come with a disclaimer that says "in realistic quantities". The idea is that if you do not act and have no hope (become jaded) then I think you will have a high probability of missing out on something that could help (or cure).

Totally agree! You never know!

 

[perrier]

TN sounds so absolutely horrible: my great sympathies to all those afflicted.

I have reached ‘radical acceptance’ and am always conscious of how much worse off some people are, including those with ‘just’ severe ME/CFS.

My Lyme pain is over now, leaving just moderate ME/CFS constant fatigue and PEM.

Spending days in bed but able to read and write is certainly not the worst thing in the world.

I am fortunate though to have had my career and family. It is psychologically much worse for young people I think.

It is horrific for young people, horrific.

 

[perrier]

@hmnr asg Wow, that sounds rough.

@Mary Yeah I totally agree that hope can be a killer. Some of the times I have felt the lowest was when I foolishly believed that this next treatment will have a big effect. It's hard not to when you read so much about it, see others experiences, and how much it links to your own condition. Then inevitably it does nothing and you feel like you will be stuck like this for a long time to come... until the next promising treatment.

I have gotten better at reigning in my expectations over the years but it is still something I need to get better at. I tell myself often in my head "there is a good chance this will do nothing like the vast majority of other treatments you tried" yet I still get too hopeful.

When I say "act and hope" it should come with a disclaimer that says "in realistic quantities". The idea is that if you do not act and have no hope (become jaded) then I think you will have a high probability of missing out on something that could help (or cure). The flip side to this is that if you act foolishly you can make yourself worse (or dead), if you hope too much you can become jaded.

Even if you are severe bed bound. Perhaps your action will be constant meditation and your hope will be that this phase passes or that someone outside will help. Better than giving in to it.

Depends how long one has been sick and how severe and how much pain; eventually, the soul and mind do become affected.