Up Front by Emma Hart

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Up Front: Something Chronic

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  • Peter Darlington,

    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.

    So we shouldn't be backing up those 30 km pushes over hill and track with several pints of strong ale then?

    Best tell Simon...

    Nelson • Since Nov 2006 • 949 posts Report

  • Paul Campbell,

    and that was part of what was triggering my problems, dehydration when traveling (and a recently rebroken toe) - now I get that aisle seat so I can drink like a fish and toddle off to the loo - my trip earlier this month was thankfully pain free

    Dunedin • Since Nov 2006 • 2623 posts Report

  • dyan campbell,

    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,

    The study didn't show a 0.5% beneficial change - but I didn't explain the figures so I can see why you would interpret them that way.

    The study showed a reduction of 0.5% in A1C or glycosylated haemoglobin.

    A1C measures the level of "haemaglobin with sugar sticking to it". Any reduction of this number measuring A1C is beneficial to someone with diabetes.

    The result of the 0.5 reduction of A1C resulted in a reduced mean arterial pressure (MAP) of 6 mmHg.

    This represents six millimetres of mercury (Hg) which is a significant - not huge - but significant change in mean arterial pressure.

    It is significantly more than a 0.5% beneficial change overall.

    Of course does not mean "cure" but a reduction in this number without any change in diet, weight, medication or activity is remarkable. It is extraordinary that people can affect their blood chemistry, metabolism and blood pressure with only their minds. It's especially remarkable as these people only followed this protocol for a few weeks.

    I'm by no means advocating giving up medication or avoiding medication altogether, nor is anyone who works in this field.

    and I think advocating meditation and positive thinking for those with serious illness borders on being insulting. .

    While it is understandable how some might find any suggestion of these techniques insulting, there are others who welcome any information that can allow them to have some control over the way they feel - physically and psychologically.

    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 think the inference of "positive thinking" is from the subjects' reported experience of "thinking more positive thoughts" but not through force of will, but because the disturbing obsessive thoughts just kind of wind down and lose some of their disturbing buzzy quality.

    Learning how to reduce our experience of stress, fear and pain and learning relaxation techniques can be useful in any circumstance

    But those of us who consider these techniques valuable should hear those of you who resent too enthusiastic an endorsement. I am as guilty of this "rah-rah try this" as Peter Ashby ever was, and neither of us mean to be as annoying as we come across. We just mean "there it is - take it if it helps - chuck it aside if it's useless".

    I am also reminded of tending sick animals when I was a kid and being dragged away by parents who insisted that the dog/cat/rodent/bird/reptile really needed undisturbed sleep more than a helpfully hovering presence. There is a parallel here somewhere...

    auckland • Since Dec 2006 • 595 posts Report

  • recordari,

    There's so much to learn on this thread, but perhaps the lesson which I hope will make me a better person, and a better PAS person, is how important empathy is in group dynamics. Where it has worked is individuals sharing honest experiences without judgement or condescension. At other times, not so much.

    Was considering a Madonna track here, but on second thoughts...

    AUCKLAND • Since Dec 2009 • 2607 posts Report

  • Leigh Russell,

    I must say I'm finding the repeated touting of positive thinking in the above thread nauseating. I used to be into it to - before I developed CFS. I still wish it were true but it isn't. You may be able to change your attitude to your illness but you cannot think it away. Those who seem to be able to do so may be fortunate in achieving spontaneous remission. I've written quite strongly about this in my own article http://rushleigh---the-wasteland-chronicle.blogspot.com/2010/04/positive-thinking-pitfalls-and-medical.html. When I had finished drafting that article I went looking for a medical research project I remembered seeing. I didn't find it but I did find an excellent article by oncology doctor Jimmie Holland whose conclusions mirrored my own. You'll find the link to it in my article. The modern myth that through positive thinking we can change our bodies as well as our minds has very damaging effects on those who do not recover. She noted that some long term cancer survivors were confirmed pessimists, others optimists. 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.

    Otago • Since Jul 2010 • 208 posts Report

  • Sofie Bribiesca,

    Actually, I make magnificent lamb shanks,

    I have been told that mine are the best sorry Emma. I am now doing said shanks for a dinner party in a couple of weeks.My recipe does include that which you use doll, but long time nurtured on a bed of brocc with shots of tequila and lashings of Cointreau (actually I'm generous with what's at hand) has given me a rep amongst friends who have tried them. Today I have spent time selecting enough wine for the mulled continuity of the evening. Being a vegemaquarian,I just hope it all goes down well. On that note, I hope all you guys with these illnesses are having a super, better than usual day. :) xox

    here and there. • Since Nov 2007 • 6796 posts Report

  • Sue,

    Actually, I make magnificent lamb shanks,

    I have been told that mine are the best sorry Emma.

    I'm sorry everyone but you are all wrong. The very lovely Stephen Judd is the king of lamb shanks, he's a bit of a gastronomic genius all round really.

    Wellington • Since Nov 2006 • 527 posts Report

  • Julie Fairey,

    On the positive thinking lark - I agree with others who have said it doesn't seem to work. My own health experiences, and the sudden death of my father only 2 weeks after diagnosis with what looked to be a curable cancer, back that up. Dad was so positive (although I'm sure he was also v scared) that the last thing he did before going into the surgery he never woke up from was to tell the surgeon a slightly dirty joke.

    The other stuff about cancer in particular which soundly pisses me off is all the battle talk. As if if you die you didn't fight hard enough or you weren't a good enough soldier whatever that means. I heard some stuff on the radio recently (no link sorry) that showed that the biggest indicators for survival from cancer were what type of cancer, and how early it was treated. In other words: largely luck (at an individual level, there are of course systems that a society can put in place to eg increase early detection of certain types of cancer, make sure there is capacity to start treatments asap etc. )

    I'm pretty sure we're past the exercise derailment now. Which is a relief - I composed a long rant about it in my head this morning, which is now, I hope, unnecessary, which is just as well cos I could do with a lie down instead ;)

    Puketapapa Mt Roskill, AK… • Since Dec 2007 • 234 posts Report

  • Sofie Bribiesca,

    I must say I'm finding the repeated touting of positive thinking in the above thread nauseating.

    Which of course is fine, but I kinda agree (and don't expect anyone else to if they don't want to) with Dyan, being that ,take what info you want and ignore the rest. Surely one thing that has become obvious here is, how unique each persons experience is, so somewhere, somehow, sometime, some info might be beneficial. Jus' sayin. Ignore me please if it stinks for you, seriously.

    here and there. • Since Nov 2007 • 6796 posts Report

  • Jackie Clark,

    The other stuff about cancer in particular which soundly pisses me off is all the battle talk.

    Snappy mcsnap snap. I was going to compose a rant about this also. Re the positive thinking thing, I have long thought that it is largely denial based ie I won't let this thing beat me, I am stronger than this .

    Mt Eden, Auckland • Since Nov 2006 • 3136 posts Report

  • giovanni tiso,

    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.

    Society has mostly gone secular but we still seem to have to manufacture ways of thinking that being unhealthy is immoral. Perhaps to suppress the notion that disease strikes mostly at random, which seems to be even harder to process.

    I have Barbara Ehrenreich's Smile or You Die: How Positive Thinking Fooled America and the World in my Reading Queue of Hell.

    Wellington • Since Jun 2007 • 7473 posts Report

  • giovanni tiso,

    The other stuff about cancer in particular which soundly pisses me off is all the battle talk.

    Loved Ones Recall Local Man's Cowardly Battle With Cancer.

    Wellington • Since Jun 2007 • 7473 posts Report

  • Stephen Judd,

    Oh gawd, when my late mother had breast cancer she hated that positive thinking stuff with its implication that victims weren't thinking right. And now we know, thanks to Science (TM), it doesn't make any difference.

    I understand that in the social psychology there is this type of cognitive bias called the just world fallacy, whereby people rationalise random injustice away and try to find reasons why it must be fair. I tend to think this is one thing that supports the positive thinking in illness.

    And clearly we need a PAS cook-off at some point....

    Wellington • Since Nov 2006 • 3122 posts Report

  • Jackie Clark,

    I've never had lamb shanks. I can be the perfect guinea pig.

    Mt Eden, Auckland • Since Nov 2006 • 3136 posts Report

  • Russell Brown,

    And clearly we need a PAS cook-off at some point....

    I'm thinking my standard enhanced-Jamie-Oliver shanks would get arse-kicked in that competition. I'd have to go for broke and hope I could properly pull off the rogan josh shanks. It'd be some freakin' drama.

    Auckland • Since Nov 2006 • 22850 posts Report

  • Heather from Auckland,

    This is super-late, but I just came across Peter's comments about CFS being a recent disease, and therefore as a result of recent lifestyle changes (as in sedentary-ness).

    I think it's as a result of quite a different lifestyle change: wealth.

    Once upon a time we didn't have diseases of aging, like Alzheimers, as no one got to live to be old.

    Once upon a time people like myself wouldn't even have been born: my mum had polio in childhood, and then my older brother was a forceps delivery. Even today, in much of the world, she would have died of each of those (I know you can't die twice...).

    And, in most of the world even today, I wouldn't have had CFS for 7 1/2 years, because I would have died years ago.

    To stay *alive* I *need* someone else to procure and cook almost all my food or I will starve. I *need* someone to shower me and take me to the toilet (or provide various pieces of equipment to enable me to do these myself) or I will die of the diseases that go with poor sanitation. Pre-industrial revolution in the West, you would have had to be aristocracy to have the kind of wealth to purchase that level of service. And today in much of the majority world that's still the case.

    Yuppie flu? Only in that you have to practically be a yuppy not to die of it.

    Auckland • Since Jul 2010 • 5 posts Report

  • Stephen Judd,

    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

    Wellington • Since Nov 2006 • 3122 posts Report

  • Sofie Bribiesca,

    Often thought, that people in general are always expected to be happy, happy, joy, joy, when this is obviously impossible. Many friends have tried Prozac (or equivalent) just because they think this is meant to be, or that society expects it of them.That is a lot of pressure on anyone.

    And clearly we need a PAS cook-off at some point....

    No Stephen we don't. I'd hate to show you up. It would be too cruel ;)

    here and there. • Since Nov 2007 • 6796 posts Report

  • JackElder,

    I had assumed the ban on lamb shanks was some cockney rhyming slang-based prohibition on the vile practice of self-pollution.

    Wellington • Since Mar 2008 • 709 posts Report

  • Sofie Bribiesca,

    I've never had lamb shanks. I can be the perfect guinea pig.

    Well you can start with mine at my place. You said you'd come along didn't you?

    here and there. • Since Nov 2007 • 6796 posts Report

  • Jackie Clark,

    Why yes I did. It's even in the diary. Is it next weekend?

    Mt Eden, Auckland • Since Nov 2006 • 3136 posts Report

  • Sofie Bribiesca,

    It's moved to Fri 6th Aug. Steph had a birthday interfering.

    here and there. • Since Nov 2007 • 6796 posts Report

  • Jackie Clark,

    K

    Mt Eden, Auckland • Since Nov 2006 • 3136 posts Report

  • Cecelia,

    I don't know, Heather. If you were my daughter or sister or friend, I'd find a way to look after you whatever century you lived in or amount of money we had:)

    I've been lucky in that I've had violent outbreaks of bad health followed by rapid recovery - even now after some gruesome head and neck surgery I'm only slightly speech disabled and getting better and have a minor disfigurement which friends now show no sympathy for:) I feel an empathy with those with chronic ill health for which there is no cure: my mother had lupus and rheumatoid arthritis for over 20 years.

    I think Dyan is right about Vipassana meditation - it's different from positive thinking - whatever that is. I have friends who have made Vipassana a lifestyle. It sounds wonderful. They have never claimed that it could heal a physical ailment, OTOH. In fact I remember one of their foremost teachers dying of cancer some time ago.

    how important empathy is in group dynamics

    That is lovely recordari. I always thought you sounded like a nice young person.

    Hibiscus Coast • Since Apr 2008 • 559 posts Report

  • recordari,

    Thanks Cecelia. I was initially terrified about posting on this thread cause I didn't want to inadvertently kill the amazing buzz that was going on. But then I thought 'just don't be a prick about it, and you'll probably be fine'.

    Lamb shanks

    Usually I don't follow recipes, as, well, it requires reading them, but I once made this Nigela Shanks recipe. It was pretty damn good. But my speciality is the whole 1.5 - 2kg Garnet Road butchers leg of lamb, done in an outdoor oven with loads of fresh rosemary from our garden, slow roasted until the skinny end is shank-a-licious, and the other has a nice pinkish tinge on the bone. Crispy kumara and new potatoes on the side.

    Is this a cooking thread yet?

    AUCKLAND • Since Dec 2009 • 2607 posts Report

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