Up Front: Something Chronic
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1.5 - 2kg Garnet Road butchers leg of lamb, done in an outdoor oven
Is this a cooking thread yet?I'm sure RB will be in shortly.
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@ Cecelia
I'm sure you'd want to, but the price would almost certainly be starvation (as in, dying), for you and your whole family if you did.
I'm not being melodramatic. Due to my CFS, I spend many hours every day flat on my back listening to the BBC world service radio. I keep a wee tally of 'if I lived there I'd be dead', and it's a rather long list.
Just a few weeks ago I was crying (literally) over the story of an Indian woman who died before the interview with her went to air, simply because she had had no sons. She died at the age of 50-something, because she no longer had the strength to grow her own food. Her husband was already dead (can't remember what of, but I think it may of been starvation), and her only other family were two adult married daughters. They had done what they could for her, but they each lived half a day's walk away (as in, a visit home to mum meant giving up an entire day's productivity, when they were on the edge of subsistence), and anyway, their primary responsibility was to care for their respective parents-in-law, who were also now too old to manage in the fields. Should they have shirked that responsibility, all it would change is which set of parents got to live beyond their productive years and which didn't. In that subsistence economy, he (or she) who doesn't (or can't) work, doesn't eat. That's why they have so many children in developing countries, and why there is such a strong preference for sons in the highly patriachal ones.
If I was one of that woman's daughters then:
a. my mother couldn't feed me - heck, she couldn't even feed herself;
b. if my husband and children tried to feed me, wash me, toilet me etc. then they would be losing a worker for quite a few hours every day, and in return getting another hungry mouth. Soon those who were working would become less productive due to malnourishment, making them more malnourished, making them less productive etc. The only way out of that would be for me to voluntarily starve myself, for them to find some aid workers or missionaries or something to abandon me to in the hope they would take me in, or for us all to die. I have heard stories of all three scenarios on the BBC world service radio, happening today in other countries. The one that breaks my heart the worst is the middle one - people who abandon and disown family members as an act of great love for those family members and for the remaining members of the family.It's a harsh world out there...
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I think Dyan is right about Vipassana meditation - it's different from positive thinking - whatever that is.
Thank you, Cecilia. People are arguing with me without actually paying attention to what I've written.
This is what I wrote above:
The concept of "positive thinking" is not part of mindfulness. Your thoughts are free to be disturbing, sad, happy, crazy, vengeful, erotic, petty... just thoughts. You just let them run down until the spaces between the thoughts actually become evident.
The gist of "mindfulness" is really more letting the disturbing chatter in the mind run down and go calm, as well as being aware of aches, pains and sensations while not instinctively tensing up against them. There is no judgement made on the thoughts or their nature at all. In fact, that's kind of the point of the technique.
I keep saying I don't endorse any kind of "positive thinking" and nor do any clinicians advocating mindfulness as a technique for coping with pain or illness. Quite the opposite, in fact.
Nothing to do with positive thinking.
Jon Kabat Zinn Centre for Mindfulness has no links with Buddhism of any kind, and his work is through the U of Mass Med School. The techniques used at that institutiion (which exists to help patients with chronic pain) are identical but there is no religious, iconic or spiritual dimension to the programme whatsoever. They are simply techniques for calming an agitated mind to help reduce the unpleasant experiences and effects of illness.
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What an interesting discussion. Just a couple of comments.
I too really dislike the idea of battling. What's wrong with a bit of acceptance?
Someone mentioned that CFS is new. I've referred before to my missionary ancestors at Waimate North in the Bay of Islands, who arrived in the early 1820s. One of the missionary daughters had a mysterious illness and was an invalid for several years. No details except ongoing concern from her father at her condition which seemed to improve then relapse. In her late 20s she suddenly recovered and went on to have several children. I've often wondered whether that was some form of CFS.
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Thank you, Cecilia. People are arguing with me without actually paying attention to what I've written.
I wasn't arguing :-) This is interesting.
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That missionary daughter, Serena, is my direct ancestor. No CFS in the genealogical line that I know, but lots of allergies. I wonder if that's linked?
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I wasn't arguing :-) This is interesting.
I always knew you had good comprehension skills there Russell. And you might find this book interesting; it talks about the importance of identifying which kind of kidney stones you have before you make any dietary decisions.
The stuff about "postive thinking" and "being a hero"... where are people getting this stuff?
25 years ago I wrote about "sickroom ettiquette" for the terminally ill:
"Don't try to label the sick person a hero" I wrote "because this is just a new-age way of fobbing off the patient's actual experience. They are likely to be frightened, angry and upset and have a right to express these feelings. Also a tear or two might be okay, but don't turn the visit into a premature wake; if you are too upset and the patient winds up comforting you your presence is counter-productive. Get the grief and tears out of your system before you see them".
BTW if there is a PAS bake-off, boy are you all whupped. I am the Ultimate Supremo Baking Superbaker. Unbeatable, and I'm being modest here. I have invented more baked goods than most of you have eaten.
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In terms of the genetic issues, my mother's family has some immune stuff going on. I can't remember the name of it but my mother and her father both had a specific gene thingy (anti-trypsin or something like that?) which if present gives a much higher probability of developing a number of conditions given exacerbating environmental factors. I'm a bit foggy tonight but the one I can recall is v high chance of getting cirrhosis of the liver if much alcoholic consumption. I didn't know this until quite recently, and v fortuitously never really started drinking. Phew! I think rheumatoid arthritis is another illness more likely with this gene. My grandfather had that and his form of self-medication meant he got cirrhosis too. There's a test, which Mum had had, but I'm not sure.
So it's a complex weave, these bodies of ours and how they work. Parts of the pattern we can't even see yet, but our grandchildren will spot clearly and be amazed we missed. -
That anti-trypsin thing is in another family line. Not meant to drink or smoke as higher susceptibility to cirrhosis and emphesema /COPD.
Another branch has haemacromatosis - too much iron and effects worse than too little - need to be bled every so often.
I'm sure most families have these little quirks. -
Sue,
@Hilary Stace
It's in my brain and i can't remember why but CFS has been around in the medical world since the 1860s so you might have an idea of an answer there
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The classic comics (alright, The Guardian) version of Barbara Ehrenreich on positive thinking which Giovanni referred to up-thread:
Cancer is not a problem or an illness – it's a gift. Or so Barbara Ehrenreich was told repeatedly after her diagnosis. But the positive thinkers are wrong, she says: sugar-coating illnesses can exact a dreadful cost.
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JLM,
Back when I was researching in the abuse field, it used to piss me off how everyone had to be a "survivor", and how being a "victim" was somehow weak. If someone's done something horrible to you, why shouldn't you be a victim?
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Also, my Moroccan lambshanks with chickpeas totally beat everyone else's!
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I am an average lamb-shanker, but I make the best jambalaya and étouffée. I'm afraid I can't help it; it's genetic. (And, uh, I don't know anyone else in NZ who makes them regularly. Is that winning or cheating?)
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All I know is that I see a lot of chronic burbling monkey syndrome out there, it's epidemic.
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I don't have any trouble believing there are many other diseases to which women are more prone.
Neither do I. I'm just really cautious about anecdotal evidence. It's always worth following up on perceived trends but for something like CFS where cause(s) are still so uncertain even a simple misdirection like women get it more than men could create lots of confusion if it isn't really true.
Women are most definitely different medically, I didn't mean to imply that couldn't be true. In fact the history of drug discovery and testing in the 20th century is littered with cock ups because drug testers didn't think to test the drugs on women. The most obvious result is that common anesthetics were all tested on men and nobody realised until far too late that women react really badly to most of them. Hence I'm up and about all bouncy after a general and my darling feels like crap for a few days.
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I am loving this thread. I am learning things, and yesterday, I got to gloat about being on the treadmill.
Talk about letting the side down: I tick *none* of those boxes. Quick, someone tie my right hand behind my back and confer an honourary philosophy degree upon me!
I don't either, Danielle. Want to form our own forum. We can talk about laydeez things like shoes and handbags, and compare recipes. Oh...wait.
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.
I'm in. I don't do lamb shanks, but I will bake. Possibly the marbled cheesecake brownies I made on the weekend. Or some kind of amazing dessert.
Hmmm. Can we make this happen?
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I don't think the positive thinking thing is all negative. Perhaps not so much positive as seeing it as an opportunity for some interesting new experiences, even if some you would rather not have, had you a choice.
For example, having a child diagnosed with autism means you won't have a boring life. Jen Birch's autobiography about her autistic life is called 'Congratulations, it's Asperger Syndrome.'
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Sue,
I can totally work out a way to make the baking happen in wellington
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Neither do I. I'm just really cautious about anecdotal evidence. It's always worth following up on perceived trends but for something like CFS where cause(s) are still so uncertain even a simple misdirection like women get it more than men could create lots of confusion if it isn't really true.
I'm not sure we're in that much of a vacuum though. The CDC factsheet says "CFS affects women at four times the rate of men." I'd go with that.
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those who say they were cured with exercise most probaly were never given a correct diagnosis, as all studies point to those experiencing CFS as needing to be very careful around exercise.
Or, only after their CFS had ended were they able to exercise. Hence the ability to exercise and the ending of CFS coincides and that leads to the association of successful exercise with the end of the CFS. There is a cause and effect relationship but it is the wrong way around. Basically a recipe for confusing anecdotes.
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So for the last couple of years I've been feeling vaguely guillty every time I braise lovely lamb -- and for nothing?
The guilt probably added to the pleasure :P.
mmmm slow cooked meat is my favourite. I'll add slow cooked ribs to the list it only take 2 days to cook but it's worth it.
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This
She says, and I agree, that we each has to cope in whatever way works best for us, and no one else should be dictating what attitude we should or should not have.
From someone fond of giving advice (sorry bad habit) it may come as a surprise that I firmly believe in this.
Whatever makes you feel better is what you should do. Modern medicine is great, modern drugs can do great things. But on top of all that anything you do, be it watching soap operas or yoga or driving fast cars or wallowing in misery or whatever, anything you do that makes you feel better is good.
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Heh, since I'm a make it up as you go kind of cook, there's no telling whether I can reproduce past successes :D
I hate that. My better half does that and then can't remember next week how she made that wonderful dish so this time it will be different. Meanwhile unless I have detailed and precise instructions my cooking is fail :(.
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I don't think the positive thinking thing is all negative. Perhaps not so much positive as seeing it as an opportunity for some interesting new experiences, even if some you would rather not have, had you a choice.
I think it's like many cures. Worth a shot, but by no means guaranteed to help.
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