Up Front: Something Chronic
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@Islander
We are also the descendants of those who did not fall prey to scarlet fever in infancy, or measles, or became deaf and/or sterile from mumps not to mention the scourges that were polio and TB. We humans may think that we are immune to natural selection now, but it is not true. Also disease organisms become less virulent over time since it is hard to spread if you kill or seriously debilitate a victim. One reason Ebola has not spread beyond small areas in Africa, yet.
If you add in the combined effects of childhood immunisation and much better nutrition along with hygiene you get our increased lifespan, including a rise in the diseases of old age.
I feel for people with osteo/arth since some years ago a joint in my hands wore out completely. They had to go in a cut the joint out then put a piece of bone from my iliac crest in the gap to fuse the bones. They did that because eventually that would have been the outcome along with much pain. I spent some time being assessed for osteo/arth at the Hammersmith Hospital including a bone scan. Fortunately they found no systemic condition, the surgeon I finally got to see said it was a function of my loose joints, that joint is not designed to move and in me it did, too much. So I have a strong inkling of the pain and disability. However it is a spectrum and we do also know that there is truth in the 'use it or lose it' adage, though maybe not for all. However we don't know that someone with early onset might have got it earlier had they been more sedentary.
I am not accusing you of being sedentary but there is much morbidity in later life from lives lived in far too sedentary a way. It's all tied in with the obesity epidemic as well, sure junk food is a big culprit but again, our ancestors had some pretty awful diets too. The main difference is our calorie burning is simply not high enough. We also know that obesity and overweight causes generalised inflammation which could be risk factors for conditions like osteo/arth, atherosclerosis and cancer (chronic inflammation and cancer is a big research area at the moment).
If you look at some pop videos from the '70s one thing that strikes you is how thin everyone was back then.
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Ah, pop videos, that great, 100% representative sample of body types in general populations. Look at how corpulent the professional entertainers and dancers of today have become!
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Peter, with all due respect, CFS is not ordinary tiredness. You may feel better after exercise, I feel better after exercise, but we don't have CFS.
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The Greeks made a reconstruction of a bireme, or was it a trireme? and even modern day elite rowers couldn't even approach the speed and endurance ancient sources treat as routine.
Wow, that's quite impressive nonsense. Is anybody really treating the descriptions of athletic feats in ancient sources as literal, measurable records?
I have learnt the hard way that I HAVE to exercise. If I don't then
Have you considered the possibility that your body has in fact become addicted to your fitness regime? That's a pretty common phenomenon amongst former athletes. I was reading about the post-competitive life of footballers some time ago, and it sounded like a nightmare - what they had to do just so that their body did not fall apart, I mean.
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I expect ancient rowers hardened to the task set to them. Which would be in many cases to row all day. We don't have many events like that, people don't actually need to row around, so our rowers will not be tuned to it. I doubt the ancient rowers could have come close to the moderns in modern events. I doubt their sprinters could have kept up with our champs either.
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Is anybody really treating the descriptions of athletic feats in ancient sources as literal, measurable records?
C'mon, Gio, no ancient writers ever exaggerated to suit their own purposes. In other news, Methuselah was *totally* 969 when he died.
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@Peter
Here's an excerpt from the US Centre for Disease Control's "basic facts" page on CFS, covering treatment options:
Lifestyle changes, including prevention of overexertion, reduced stress, dietary restrictions, gentle stretching and nutritional supplementation, are frequently recommended in addition to drug therapies used to treat sleep, pain and other specific symptoms.
Carefully supervised physical therapy may also be part of treatment for CFS. However, symptoms can be exacerbated by overly ambitious physical activity. A very moderate approach to exercise and activity management is recommended to avoid overactivity and to prevent deconditioning.
My emphasis. There's a great deal more information on that website. Perhaps you could read it. It tends to suggest that your approach to the issue is, to put it politely, simplistic.
We have become really, really soft and we have only the vaguest idea of how soft. If it is patronising to point out reality then I am not apologetic.
Good grief.
Can I suggest that having conquered your physical challenges, you devote some time to working on your emotional maturity. Because it is sorely lacking.
It's obvious to most people that a sensitive topic should be approached sensitively, rather than in the manner of a man issuing orders through a loudhailer. Several people have signalled to you that you're not helping, and your response shows all the humility and self-awareness of Andy Haden on Deaker.
Your story could have been instructive, even inspiring. But your habit of ceaselessly projecting your own experience onto other people and complaining when they turn out not to be you is unhelpful and unscientific. It's also something children do before they learn better. Grow up or I'll remove you from the discussion.
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Peter puts me in mind of our haematologist when Ian had leukemia. Never mind that only 30% of people with ALL survive past 5 years, by which time they aren''t seeing the haematologist anyway, she really couldn't believe how much pain he was in. It's all in your head, she blithely assured us. So we insisted on seeing a pain specialist who, instead of telling Ian to buck up, told us that it was an area that people didn't know much about in patients who'd undergone the physical equivalent of Hades, because most of them didn't make it. And this is what Emma's post has done. Opened up a forum for people who have chronic fatigue. People who nornally would not mention it, and indeed have not. Like people who are left with dire consequences of intense chemo and radiotherapy, one never hears of the pain, and the hell that life can be, because no-one wants, or is allowed, to talk about it. You find your new normal, much as it sucks, because life goes on. Even if you can't participate in it fully, from time to time, or for months and years on end. It still goes on.People with chronic conditions don't whine or complain publicly. They get on with their lives in the best way they can. And that is why it behoves the rest of us to listen.
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Meanwhile, whose doctor tells them not to eat broccoli?
Mine, that's who. My oxalates are still a bit high, which raises the risk of another kidney stone -- and, I'm increasingly thinking, is tied up with my chronic, low-level allopurinol-defying gout symptoms.
A look at a reasonably authoritative chart suggests that it's spinach more than broccoli I need to avoid, and, sadly blueberries, which I would cheerfully eat every morning in season. I'll live with the oxalate level in tomatoes (which are cheerfully hit with the ban-hammer in some guides).
But the real shocker is what they call "lambs quarters" in the US. Out-of-the-park worse for what ails me than anything else I could eat. Braised lamb shanks and shoulder chops are some of my favourite things to cook and eat. I make them beautifully. Bah.
Righto, I think I'll go for a ride.
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Peter, I'll also ask you to please not re-enter this thread unless you're prepared to have a discussion, and respond to some of the things people have said directly to you. You were perfectly happy to get very personal with my life, and now you won't even reply to what Sue and I have said? You're being extraordinarily rude.
Also, please do let me assure you that nobody, nobody on this thread thinks you're a superhero.
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An interesting discussion ably steered back on course by Russell. I now have a much better understanding of CFS.
It shows that if you need to be well informed and to become your own advocate. I'm inspired by a young man on the Oral Cancer Foundation website who said his wife put up a sign by his hospital bed: "Don't touch this man without an anaesthetic." (Actually I can't remember if it was anaesthetic or morphine or whatnot but the principle appealed to me. His attitude was that only the patient knows what pain he is in and he has a right to pain free treatment. I can't put it as well as him but he sooo had a point!)
And part of making your way through the crocodile infested swamp of serious illness, is dealing with the wishful thinkers. After I bounced back from an advanced cancer in 1997, the very well-educated mother of one of my students, said, "It must be all your positive thinking." Good heavens - I was terrified and depressed and terribly worried about my kids. I had planned the songs at my funeral. (I was into Enya at the time - oh dear.)
I survived because I eventually got some gold standard treatment or by some lucky chance.
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Hey, good news, Russell: what we call lamb's quarters in the States is just a common or garden weed. Not the forequarters or hindquarters of an actual lambykins. Just greens, high in oxalatey-stuff, just like spinach and brassicas and so on.
So you can nosh away on your lamb shanks with impunity. As long as you make enough for me too!
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So you can nosh away on your lamb shanks with impunity. As long as you make enough for me too!
I believe Emma has her hand up too..
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Meanwhile, whose doctor tells them not to eat broccoli?
My Dad, a cardiac patient no less, has to avoid bananas and salt all his food due to something wiggy with his potassium levels. What is good healthy advice for the general population may be disastrous for an individual.
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I believe Emma has her hand up too..
Actually, I make magnificent lamb shanks, with honey and rosemary and garlic and red wine. They go all beautifully dark and blood-candied. I'm beginning to think Megan and I should come up and cook.
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I think the maximum oxalate menu would be something like wilted spinach salad, main of palusami (taro leaves have mega oxalic acid) with cassava chips, and rhubarb crumble for dessert...
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Does anyone know if CFS is the result of the body actually having normal fatigue symptoms - lactic acid etc. Or if it's more "phantom" in that the parts of the body are actually fine, but it's sending the wrong signals to the brain?
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Hey, good news, Russell: what we call lamb's quarters in the States is just a common or garden weed. Not the forequarters or hindquarters of an actual lambykins. Just greens, high in oxalatey-stuff, just like spinach and brassicas and so on.
Really?
Well I never.
So for the last couple of years I've been feeling vaguely guillty every time I braise lovely lamb -- and for nothing?
Well, not quite nothing -- I do need to moderate my protein and purine intake for the gout -- but, hell, I'm kinda of tempted to get back on the bike while I still have a sweat up and get some goddamn shanks.
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My Dad, a cardiac patient no less, has to avoid bananas and salt all his food due to something wiggy with his potassium levels. What is good healthy advice for the general population may be disastrous for an individual.
I'm having fun looking for dietary conflicts between my gout/kidney-stone thing and my diverticular disease thing. Wheat bran, for example, is high in oxalates, but just great for managing the latter.
I've improved my general well-being in the past year by having a good, oaty muesli with fruit in the mornings, instead of glutinous Baker's Delight bread. More than one fatty breakfast a week seems to be too much, too. I had a little diverticular attack this week and it kinda staggers me that I put up with the symptoms -- back and abdominal pain, bloating, general crapness -- for so long last year.
Ironically -- and without wishing to resume a boring argument with Peter -- both of these problems were proposed in the first instance by my osteopath, who felt I had something more than a bad back. My GP eventually diagnosed, but badly mismanaged, the kidney stone, and completely missed the diverticular disease, which wasn't picked up until it showed up in a scan for the stone.
I've changed GPs to one with a clue.
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hell, I'm kinda of tempted to get back on the bike while I still have a sweat up and get some goddamn shanks.
Would that temporarily render your bike a shanks' pony?
(Obligatory soundtrack to that quip:
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In the case of type 2 (which accounts for more than 95% of all diabetes, then indeed you can alter the insulin receptivity, if not the production of insulin.
Dyan, the study you quote is an uncontrolled one of 14 people, which found a beneficial change of 0.5%. I don't find that convincing, and I think advocating meditation and positive thinking for those with serious illness borders on being insulting. While I'm sure meditation, yoga, and generally doing things that make you happy helps you cope with serious illness, I've never seen any evidence that it's a cure.
I think the belief that we can "think ourselves well" comes from the belief that our health (and destiny in general) is under our control. It just isn't. Serious illness can strike anyone, at any time. And you can't just unthink it.
And "thinking positive" can so easily lead to self-delusion and denial: if you don't really listen to your body, you can make yourself much sicker. I'm sure the other CFS sufferers on this thread will have done as I have done: tried so hard to force their bodies to perform normally that they made their illness much worse. We have to work out ways of living within our limitations. And ways of coping with the psychological and emotional effects, which are considerable.
I'm always immensely grateful for the help I get from those close to me, even in small ways. And even a little kindness and understanding from others makes my life soooo much easier. Many thanks to those on this thread who have expressed their support, I value that more than I can say. And knowing that many on the thread also have CFS and understand exactly where I'm coming from, that's wonderful, too.
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(completely off topic)
having just been diagnosed with gout (only happens after taking long plane trips out of NZ .... leaving me hobbling doctorless somewhere else in the world, which is why it took so long to diagnose) I now feel like I've been thrown back to being some stereotype of a victorian gentleman with a red nose who's been hitting the brandy a bit too much .... and having already been down the gall stone route .... are kidney stones in my future? or are they unrelated?BTW I love the modern 'cure' for mild gout - drink lots of water and take a lot of ibuprofin - which is what I was doing because I was somewhere hot and my foot hurt - I was self curing before I could get back in the country without realising - mind you bulk ibuprofin is so expensive here in NZ, I can walk into any drug store in the US and buy 1000 tablets for $20, here you get a prescription because they cost so much over the counter (the downside of pharmac I guess)
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After I bounced back from an advanced cancer in 1997, the very well-educated mother of one of my students, said, "It must be all your positive thinking."
A fiend of mine had thyroid cancer in her 20s. She got really sick of people blathering at her about positive thinking -- because the underlying implication was she was to blame for her cancer because she wasn't thinking positively enough.
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and having already been down the gall stone route .... are kidney stones in my future? or are they unrelated?
Gout's definitely associated with kidney stones, but hopefully your high fluid intake will help with the latter.
My new GP and I have worked out that my vastly improved exercise regime was also a problem, because I wasn't rehydrating well enough after riding.
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She got really sick of people blathering at her about positive thinking -- because the underlying implication was she was to blame for her cancer because she wasn't thinking positively enough.
Same for the well-meaning folk - and journos - who persist in focusing on plucky battlers "bravely overcoming" disability or "not letting it hold them back" - as if everyone else are just slackers with poor attitudes.
Everest for everyone!
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