tag:blogger.com,1999:blog-111106552016-02-09T03:50:41.664+10:00green words growingsilliness, sick lit, gardening, celebrating life's lovely thingsgreenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.comBlogger177125tag:blogger.com,1999:blog-11110655.post-46575285473064179132012-08-26T11:51:00.000+10:002013-07-25T20:35:09.350+10:00BlissWe love him madly, our little boy who was born in June.<br /><br />The last eight weeks have been a beautiful blur.<br /><br />I'm not sure if or when I'll blog again. <br /><div class="separator" style="clear: both; text-align: center;"></div>greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com11tag:blogger.com,1999:blog-11110655.post-6752916844378484202012-06-13T10:28:00.001+10:002013-07-25T20:45:05.129+10:00What part of you is that?At night in bed he used to reach over and pat whatever part of me was closest to him, and ask, <i><br /></i><br /> <i>What part of you is that?</i><br /><br />It was usually my hip, sometimes my rump.<br /><br />Now it's always my belly, enormous and taut between us like a drum, he doesn't need to ask.<br /><br />He touches my belly, the baby wriggles in response, he says to it:<br /><br /><i>What part of you is that?</i><br /><br />I answer for it: <br /><br /><i>My spine, my bottom, my knee, my hand. </i><br /><br /><div style="text-align: center;">*</div><br />I know some things about the baby:<br /><br />1. It's nocturnal.<br />2. It suffers terribly from the hiccoughs. I tell it to stop gulping, take small sips instead. My tummy wiggles like an animated jelly for an hour at a time. <br />3. It loves its dad. I talk to it all day but the minute the dad gets home and starts speaking, it's like a jumping bean. <br />4. It is social and will manoeuvre its entire self to the side of my belly closest to whoever I'm talking to. I sit lopsided and try to concentrate. <br />5. It prefers female vocalists.<br />6. Strong predilection for food the dad likes - things I've never eaten vast quantities of previously - apples galore, peanut butter, litres of milk. <br /><br /><div style="text-align: center;">*</div><br />At the obstetrician's office, the midwife hooks us up to the CTG. She puts the monitor on my belly, locates baby's heart beat, and asks me to firmly hold the monitor in place. In my other hand she places a small wand with a black buzzer on the end. She instructs me to press the buzzer if the baby moves. I feel like I'm in a quiz show...and the answer is: the baby will move the whole time! She leaves the room. The baby tries to kick the monitor off. I wonder if I should just hold the buzzer down. I press the buzzer. Repeatedly. <br /><br /><div style="text-align: center;">*</div><br />I'm big. Even my ear lobes. I think about changing my name to 'Rotunda'.<br /><br /><div style="text-align: center;">*</div><br />I have the words to this song in my head: "<a href="http://www.youtube.com/watch?v=GRgnU4C1S-g">Oh the days are long, til the baby comes.</a>"<br /><br /><div style="text-align: center;">* </div><br />Can't wait to meet our little bunyip, on the outside.greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com8tag:blogger.com,1999:blog-11110655.post-62448136342708612112012-02-10T21:12:00.004+10:002012-02-12T11:36:14.419+10:00Advanced propagation techniquesWe moved house just over two years ago and set about trying to create a garden. For the amount of effort we've put in, it doesn't look that flash...yet. But we're trying. Learning as we go. My health had been improving in tiny bits here and there, my world expanded a little and I could do small helpful things some weekends. <br /><br />My main gardening role has been propagation. Also: bickering with my co-gardener about plant-placement (he who wields the trowel wins). Propagating is the perfect task for me. My husband brings me a pile of prunings, I rest on the <a href="http://www.greenwordsgrowing.com/2011/05/orange-and-black-wasp.html">cadillac couch</a> with them on my lap and trim them down with secateurs, then pot them up. I must have propagated hundreds of plants in the last couple of years.<br /><br />I've loved lavishing nurturing energy on the garden. Sometimes, in the garden, I'd think about one day getting a dog. Then I could nurture the trifecta of garden, dog and my dear sweet love. <br /><br />That common focal point for nurturing, a bambino, wasn't realistically on the cards - so I'd been told for many years and by many experts. Mind you, even without access to my test results, you didn't need to be Einstein or Sherlock to deduce that. <br /><br />I'd had time to come to terms with this, and there have been so many losses in the face of chronic illness, that this seemed to be just one more. I wistfully accepted it. The thing I couldn't accept, even after time, was that this loss directly affected my husband. Other losses that affect both of us I can minimise, mitigate, try to make up for - but not this one. <br /><br />Years ago I'd watched him toting a baby niece on his hip, and knew what a kind and gentle parent he'd be. Years ago I had no idea this illness was going to be the grim reaper of so many of our shared dreams. Once the 'years later' had elapsed and the medical reality emerged, I was sad that my Judas of a body most likely wouldn't let him become a dad. <br /><br />At our <a href="http://www.greenwordsgrowing.com/2008/09/so-happy-together.html">wedding</a>, during the speeches, there was no mention of children. I've noticed at other weddings that children feature in the speeches, often quite prominently. I was grateful for the tact of my loved ones, though to be frank, they probably didn't even think about it, it was probably only me that noticed the absence of our non-existent future whippersnappers.<br /><br /><div style="text-align: center;">*** </div><br />A few months ago we discovered that a little miracle had sprouted. In me. A little baby, who we've met at several scans, jumping around in my belly like a loon. <br /><br />Discovering I was pregnant was the most profound shock I've ever experienced. It felt like the galaxy had split in two, like fireworks went off in every cell, like a tornado whirled through my brain and reassembled it. <br /><br />Pregnancy hasn't been easy on me but we are incredulous, thrilled and grateful that I am capable of going through it at all. My husband says he just can't believe my body is doing something right. I know exactly what he means. Turns out maybe propagation really is my secret talent...but who knew it would apply to a little human being and dear new family member?! <br /><br />It is too amazing. We are so, so lucky.greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com36tag:blogger.com,1999:blog-11110655.post-20377244711434949192012-01-06T10:19:00.001+10:002012-01-07T10:03:38.413+10:00Great podcast episode: The Blue Yarn, by 99% InvisibleI was so intrigued by this episode of a lovely little design podcast I've been listening to. The episode was about how economic difficulties forced a redesign of a hospital and the outcome was wonderbunk for the patients. <br /><br />You can listen to the 10-min ep here: <a href="http://soundcloud.com/roman-mars/99-invisible-30-the-blue-yarn">http://soundcloud.com/roman-mars/99-invisible-30-the-blue-yarn</a><br /><blockquote class="tr_bq">"In 1998 Dr. Gary Kaplan, the CEO of Virginia Mason Medical Center in Seattle received some bad news about his hospital. It was losing money. So Dr. Kaplan started studying how other hospitals were being run to see if there was a better way to manage his hospital. He scoured the country, looking for a hospital with a management system worth adopting, but he never found one. Instead he ended up in Japan. At a Toyota factory. <br />When Dr. Kaplan told his staff they would be changing everything about the way they operate and the changes were based on a car company and that doctors and nurses should refer to their new teachers as “sensei,” the response was less than ideal. <br />This entire, multiyear overhaul started with a ball of blue yarn. The staff met with a Toyota Production System sensei and he took out the ball of blue yarn and a map of the hospital and told the staff to trace the path a cancer patient would take on a typical visit for chemotherapy treatment. When they were finished, it was an immensely powerful visual experience for everyone in the room. They all stared at this map with blue yarn snaking all over the place, doubling back on itself and making complicated twists and turns from one end of the building to the other. <b>They understood for the first time that they were taking their sickest patients, for whom time was their most precious resource, and they were wasting huge amounts of it.</b>" </blockquote>(Bold emphasis mine.) <br /><br />The podcast is called 99% Invisible, by Roman Mars, who describes it as: "A tiny radio show about design, architecture & the 99% invisible activity that shapes our world." I highly recommend.<br /><br />To subscribe: <a href="http://99percentinvisible.org/">http://99percentinvisible.org/</a><br /><br />For other poddies I've recommended in the past, see a previous post <a href="http://www.greenwordsgrowing.com/2008/12/podcasts-and-me-love-story.html">here</a>.greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com2tag:blogger.com,1999:blog-11110655.post-83461970225948902552011-12-03T07:44:00.010+10:002013-06-01T20:42:58.338+10:00Doctors and iPhonesI've consulted two different cardiologists this year and I can tell you the riveting news that iPhones are <i>the</i> must-have accessory for the dashing doctor about town.<br /><br /><b>Cardiologist 1: </b><br /><br />Used an iPhone to take constant calls from the receptionists. Constant! While skilled at answering the phone, it bears mentioning that C1 was unable to take my blood pressure manually. I was tempted to joke there is probably an app for that - instead I assuaged his ego by telling him everyone has trouble with it - a lie. <br /><br />C1 told me that although my <a href="http://en.wikipedia.org/wiki/Tilt_table_test">TTT</a> results were dreadful and he was very sorry about my quality of life, there was nothing further he could do for me and maybe one day I'd be strong enough to find a job where I could lie down a lot - like a librarian. I've never seen a librarian lying down, have you? What. Is. He. ON?!<br /><br />I <i>can</i> think of a job where people lie down, amongst other things, but the oldest profession is not for moi. Nobody could afford this hot bod. <br /><br /><b>Cardiologist 2: </b><br /><br />C2 is proactive and knowledgeable and keen to proceed with treatment. I'm learning lots from him. Refreshing. <br /><br />Used his iPhone (is there a MIMS app?) to read out the list of side-effects of a medication I will try sometime next year. When he got to the side-effect of 'hair standing on end', he mimed what this may look like in real life by waggling his fingers vigorously.<br /><br />I like C2, even if the bureaucratic burden of obtaining the new med is onerous. In March he suggested I try it, my application to the TGA didn't go through until July, and I'm still waiting for approval! Then it has to be imported from America. Not holding my breath. <br /><br /><b>Specialist 3 (field of medicine withheld to protect the goose): </b><br /><br />Ran very late. I joked to my husband that he was probably looking up <a href="http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome">POTS</a> and <a href="http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome#Associated_conditions">NMH</a> on the internet. I was tickled to be right! He had printed the info and highlighted the important bits in yellow. Things like: do not get overheated, stay hydrated, avoid heavy meals, eat a high salt diet, wear compression garments, don't stand still on the spot, be careful bending - the standard lifestyle tips for that cluster of conditions. After living with both diagnoses a goodly while and already deploying those tips to little avail, those expensive bits of paper were underwhelming.<br /><br />He's also a hypocrite: he told me at the previous appointment not to look anything up on the internet (he's ancient, his net-savvy patients must drive him wild). Then he based his whole appointment on the internet. The same internet I have at home. He may suspect me of cyberchondria, but I don't have enough time for that malarkey, I'm too busy pillorying him on my blog! <br /><br />I prescribe him an iPhone. Then he could forbid his patients from using theirs. And play Solitaire! As a person newly emerged into the world of smart phones, it's amazing how nifty they are. I see what the rest of the world is on about.greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com25tag:blogger.com,1999:blog-11110655.post-16268203249622051032011-08-30T17:34:00.004+10:002011-08-30T17:44:32.419+10:00Better late than never...I'm in the process of switching computers and keep finding unpublished drafts, which I'm popping up on their correct date as I come across them. They're tagged '<a href="http://www.greenwordsgrowing.com/search/label/better%20late%20than%20never">better late than never</a>' - so if you get some random updates over the next little while, that's why. <br /><br />Here's an orange poppy from the weekend, my friend gave me a punnet of seedlings in the middle of winter. They were planted outside my bedroom window and I've been watching the buds. The weather's been a bit wild as they start to unfurl, which provides a great excuse to cut each one for inside, to be gazed upon tenderly. I'd love a snooze on those petals. Oh, to be Thumbelina. <br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-LqLASHUmCyM/TlyRP889zNI/AAAAAAAAArw/_ZY80g9ND5o/s1600/IMG_7908.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="480" src="http://2.bp.blogspot.com/-LqLASHUmCyM/TlyRP889zNI/AAAAAAAAArw/_ZY80g9ND5o/s640/IMG_7908.JPG" width="640" /></a></div>greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com10tag:blogger.com,1999:blog-11110655.post-16534233199604490652011-05-07T12:37:00.002+10:002011-05-09T09:01:45.345+10:00an orange and black waspWe had a long, hot summer of incessant rain. La Niña after a decade of El Niño. Someone told me we'd had only 14 days with no rain between October and April. Whether that is precisely accurate I don't know, but it sure felt like it.<br /><br />Autumn is finally here, the cooler days are blissful. The last few days the sun's been shining. I hope it stays. I have been spending some time on my favourite piece of furniture, the Cadillac Couch, bought for me by my dear friend at her local St Vinnies. I think it's possibly what you call a klik klak couch, circa 1950s. It's bluey-green vinyl with white arms like resplendent wings. You can fold the back down to make a bed, but we have set it up as a long couch on the back patio. <br /><br />I use it for drinking tea, staring at our 18-month-old garden and feeling vexed at not being able to just move that plant to the left and wondering when the fundamentals of garden design will coalesce in my brain, watching ants scurry about, feeling annoyed at healthy people (my new hobby), enjoying Mr and Mrs Magpie and their two grey babies strolling and pecking at the ground, and assessing the solitary orange and black wasp persistently hovering close by.<br /><br />At first I was alarmed, the wasp looks dangerous: an inch long, stridently coloured, magnificently pointy bottom. It hangs about close to the ground and I worry I'll step on it. I <a href="http://www.csiro.au/resources/MudWasps.html">looked it up</a> and it's harmless, doesn't sting, and the reason it's close to the ground is because it's gathering mud to daub into a home. Several such homes have been attempted underneath the cushions on the Cadillac Couch. I always check them before settling in.greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com5tag:blogger.com,1999:blog-11110655.post-45647692806758748862010-12-31T12:41:00.001+10:002010-12-31T22:26:43.701+10:00Happy new year!<p><a href="http://lh6.ggpht.com/_hN6vrv9jvJU/TR3LyLH0TuI/AAAAAAAAAl0/Su8DCjLYcFU/s1600-h/new%20year%27s%20eve%20sparkler%20green%20words%20growing%5B8%5D.jpg"><img style="border-bottom: 0px; border-left: 0px; display: inline; border-top: 0px; border-right: 0px" title="new year's eve sparkler green words growing" border="0" alt="new year's eve sparkler green words growing" src="http://lh6.ggpht.com/_hN6vrv9jvJU/TR3Lyx6xVGI/AAAAAAAAAl8/VeiEi3pZ8HU/new%20year%27s%20eve%20sparkler%20green%20words%20growing_thumb%5B6%5D.jpg?imgmax=800" width="600" height="471" /></a> </p> <p>May your sparklers be long-lasting and your resolutions frivolous. Sending intergalactic good wishes for 2011. Onwards and upwards! </p> <p>x</p> greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com5tag:blogger.com,1999:blog-11110655.post-87639972555850621122010-11-07T12:04:00.002+10:002010-11-07T12:04:00.321+10:00Overheard“When I went back to see mum last time, she'd finally got rid of her fur coat. It was Russian black bear. She's had it ever since they came to Australia.”greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com3tag:blogger.com,1999:blog-11110655.post-72577999420020776342010-10-30T20:37:00.001+10:002013-07-25T20:51:27.780+10:00StickersWe’ve decided to leave all our instructional labels on everything (to help she with minimal memory) here for the next tenants. LOUNGE LIGHT SWITCH, KITCHEN LIGHT SWITCH, BATHROOM LIGHT SWITCH, TO OPEN BALCONY DOOR MOVE LATCH TO RIGHT. Surely they’ll love it?greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com1tag:blogger.com,1999:blog-11110655.post-90360318578089852992010-10-25T12:02:00.003+10:002013-07-25T20:52:39.700+10:00Dear black ants,I have noted that you enjoy:<br /><ul><li>eating craft glue under the daybed </li><li>swimming in the water filter </li><li>eating Temazepam </li><li>walking on my forehead </li></ul>It would be nice if you desisted from these behaviours. <br /><br />There is 70% dark chocolate on the top shelf in the pantry, I can’t believe you’re not nibbling that. If you can carry it, please bring me a piece.<br /><br />greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com8tag:blogger.com,1999:blog-11110655.post-3500843774296861142010-10-17T23:44:00.006+10:002010-11-09T17:15:09.612+10:00TiltingOur sweet neighbour turned 89 last week. He and his wife are lovely. Every time we’ve seen him recently he's reminded us, "I'm going to be 89!" He's so thrilled about it. I love the way oldies are proud of their age, like small children. It’s inspiring, and makes me wonder why we all get so het up about getting older in our middle years. He's planning to make it to 99. Good on him. I hope he does. In my mind there’s a sense of solidarity between he and I - we are frequently in our gardens in dressing gowns and slippers, and it’s comforting to see someone else wandering around with dodgy balance receptors - I'm always doing windmill arms.greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com1tag:blogger.com,1999:blog-11110655.post-46793815433203522622010-07-23T18:40:00.019+10:002013-04-11T21:02:10.368+10:00Good things about Winter<div style="text-align: left;"><div style="text-align: center;"><a href="http://lh5.ggpht.com/_hN6vrv9jvJU/TEvLZgSLvfI/AAAAAAAAAk8/0teoPzIBwU4/s1600-h/IMG_5983%5B24%5D.jpg"><img alt="sunny yellow doily by nana in-law" border="0" height="262" src="http://lh3.ggpht.com/_hN6vrv9jvJU/TErSO7G5HMI/AAAAAAAAAlA/bjHNSJjfcu4/IMG_5983_thumb%5B23%5D.jpg?imgmax=800" style="border-width: 0px; display: inline; margin-left: 0px; margin-right: 0px;" title="sunny yellow doily made by nana in-law" width="350" /></a><br /><br /><div style="text-align: left;">Dressing gowns hide a multitude of sins, steam drifting from the teapot’s spout, the air temperature is nicely vaso-constrictive, one can ponder for days whether or not seasons ought to be capitalised. Electric blankets are a magnificent invention, the slow-cooker bubbling away on the kitchen counter, anything red is so visually enlivening, flannelette pyjamas. The natives are entertaining: Queenslanders complain bitterly about the cold while inappropriately attired - my Thursday carer wears a cotton short-sleeved shirt and shivers dramatically but naked elbows and knees earn no sympathy from me - put some wool on, people! The white orchid flowering bravely in terracotta pot by the front door, wafts of wood-smoke in the evening air from the neighbours across the road, fresh parsley torn over cooked brekky on Sunday mornings, magical afternoon sun. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">How about you? What makes your list?</div></div></div>greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com19tag:blogger.com,1999:blog-11110655.post-68167459691576077162010-05-12T21:28:00.012+10:002013-06-01T20:51:44.000+10:0015I wake up every morning all excited and curious to see what the day will bring. If I could leap out of bed and do a cartwheel I would. Every new day is brimming with possibility.<br /><br />Simultaneously, my daily life is consumed with managing a chronic illness that’s a brutal task-master. There aren’t words in the vocabulary of any language to accurately describe how appallingly sick I feel. The pain is immense. My face throbs. I lay my head gingerly upon the pillow.<br /><br />Although I tell myself M.E. Awareness Week is just an arbitrary date, I have my cranky pants on this week. There’s no need for me to let a date on a calendar vex me, but it’s a non-arbitrary number that’s the problem. The number 15. The number of years I’ve had <a href="http://www.greenwordsgrowing.com/p/other-me.html">M.E.</a> and POTS.<br /><br />23 hours a day in bed, the norm for the last few years, is not fun. Nor is being hooked up to an IV (to treat <a href="http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome">POTS symptoms</a>) to gain an extra couple of hours of verticality for a day or so.<br /><br />You’d think I’d be used to it. I’m not used to it. Each minute weighs a ton. The clock on my bedside table has a red hand that ticks away the seconds. Sometimes I’m so frustrated I want to bite the clock in half. The only reason I haven’t is the match-stick wedging the battery in, put there by my late father. When I change the battery, I think of him.<br /><br />Years ago I was talking to a friend, older than me, and she mentioned that she was coming up to her 20th year of illness. Young, stupid and gauche, I gasped, “How have you not killed yourself by now?” She didn’t take offence. She seemed as surprised as I was that she was still here. Over the years we have both been equally obsessed with the concept of full recovery, although these days my obsession has reduced to a fervent hope for improvement.<br /><br />Back then the thought of 20 years with this illness was so intolerable to me I genuinely couldn’t comprehend how she’d endured it. I’d made a promise to myself that if I got to the age of 30 and was still sick, I was allowed to top myself. I am not endorsing this mode of thinking, and long before I got to my 30th birthday I’d decided to stick it out. I am gosh darn thrilled to be breathing. One day I’d love to learn to tap dance, sometimes I even do a little shuffle in my slippers.<br /><br />Of course what I really wanted was not to die, but to be given the chance to live, really live. Not this buried-alive existence that is severe M.E.<br /><br />This week I can’t help but reflect on the last 15 years, and ponder how little has changed for people with this condition over that time. Collating the research for an <a href="http://www.greenwordsgrowing.com/2010/05/me-awareness-week-2010-year-in-review.html">article summarising 2010 ME/CFS news</a> really brought that home.<br /><br />Not much has changed at all. I still have to brace myself for problems when seeing a <a href="http://www.greenwordsgrowing.com/2009/08/if-wishes-were-fishes.html">new member</a> of the medical profession. I still have to keep my mouth shut around some extended family and friends who exude the faint suspicion this is some kind of elaborate hypochondria. It is still exceptionally difficult to access disability services. There is still a woeful lack of good research and a corresponding lack of effective treatment options. There is still a lack of science to tell me whether it’s safe to consider having children if I were ever miraculously strong enough, what the risk is that I’d pass it on. It is still logistically hard to access basic health-care. So many uphill battles. Still. And I know I’m not alone.<br /><br />There is so much need for awareness raising, for great research, sometimes I feel discouraged that my efforts, and the efforts of thousands of others, have not yet brought about meaningful change. 15 years and what? I feel like I’m whispering in a football stadium.<br /><br />In recent years I’ve been blogging about my life, the lovely bits and the strange bits. It takes it out of me, I give up other things to be able to manage it. I appreciate everyone who reads, although naturally the numbers are not colossal, there is limited appeal in reading about someone who lives in bed. But am I just preaching to the choir? Does any of it seep out into the broader community? Is anyone more informed because I tell my story? I don’t know the answer to any of those questions.<br /><br />What I do know is that despite my strong personal instinct for privacy, and the little cringe inside every time I put a post up, telling my story is something I can do. It’s not much, but it’s all I have, telling the truth about what it’s like. And the number 15, that’s the reason I have my cranky pants on.<br /><br /><div align="center"><img alt="pyjama pants" border="0" height="400" src="http://lh6.ggpht.com/_hN6vrv9jvJU/S-qQyIzHkLI/AAAAAAAAAi4/kxcTdH9vYBQ/pyjamapants2.7.png?imgmax=800" style="border-width: 0px; display: inline;" title="pyjama pants" width="300" /> </div><div align="left"><br />These are not my cranky pants…these are my favourite pyjama pants. Happy M.E. Awareness Day. </div>greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com27tag:blogger.com,1999:blog-11110655.post-41295956255089241802010-05-09T21:47:00.010+10:002010-05-27T13:04:28.162+10:00M.E. Awareness Week 2010 - The Year In Review<p>Big thanks to Justin Sherman of the Brisbane Lions for supporting ME/CFS Awareness – our inaugural celeb. Former Lions player, Alastair Lynch, was a sufferer. Ta also to my sister-in-law for organising the pic.</p> <p><img style="border-width: 0px; display: block; float: none; margin-left: auto; margin-right: auto;" title="justin sherman supporting me/cfs awareness" alt="justin sherman supporting me/cfs awareness" src="http://lh6.ggpht.com/_hN6vrv9jvJU/S-oZJgDB7nI/AAAAAAAAAi0/K0-FE9g4vJg/justin%20sherman%20me%20awareness%20photo.png?imgmax=800" border="0" height="400" width="283" /> </p> <h5><span style="font-size:78%;"></span></h5> <p align="left">For ME Awareness Week I’m reprising <a href="http://www.greenwordsgrowing.com/2009/05/me-awareness-week-2009.html">last year’s approach</a>, which covered the main events relating to ME/CFS in the Western world. There is a collated list of other people blogging for ME Awareness in May <a href="http://meaware.wordpress.com/participants/">here</a>, add your name if you are too.</p> <p>So. 2010 - what a year! Seriously! But I’ll endeavour to be brief, for my sake as well as yours. Here’s some of what went down… </p> <h3 align="center">THE USA: SCIENCE AND FORWARD MOVEMENT</h3> <p><b></b></p> <blockquote> <p><strong><em>XMRV</em></strong></p> </blockquote> <p>The <a href="http://www.wpinstitute.org/">Whittemore Peterson Institute for Neuro-Immune Disease</a> (WPI) released a ground-breaking study suggesting a retrovirus called XMRV <a href="http://www.greenwordsgrowing.com/2009/11/mecfs-xmrv-x-and-etc.html">may possibly be implicated in ME/CFS</a>. </p> <p>Some feel this is a holy grail moment in the history of this illness, while others are more cautious. Most of us in the ME community are closely watching the science unfold. It’s early days yet, but if causation is able to be proven it will be a massive breakthrough. </p> <p>Follow-up studies to the initial study did not seem promising, however they were not replication studies and used different technologies than the original study. <a href="http://www.wpinstitute.org/news/news_current.html">As the WPI explain</a>: </p> <blockquote> <p>“Simply stated the only validated reliable methods for detecting XMRV in CFS patients, to date, are the methods described in <em>Science.</em> Failure to use these methods and validated reagents has resulted in the failure to detect XMRV. A failure to detect XMRV is not the same as absence of this virus in patients with CFS.”</p> </blockquote> <p>A quick look at the authors and the patient cohorts speaks volumes. What is predictable is that the people who made notably negative utterances are the ones with the most to lose, those who have built careers on the <a href="http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/THE%20PSYCHIATRIC%20PARADIGM.pdf">psychiatric paradigm</a> of ME/CFS. (Illness behaviour + deconditioning = disability, treatable with graded exercise/behavioural therapies.)<br /></p><p>Annette Whittemore’s letter to Dr McClure summarises the <a href="https://www.wpinstitute.org/news/docs/DearDrMcClureaw4.pdf">issues of concern</a> in relation to the negative studies after the WPI’s initial study. These concerns are regarding differences in patient cohort (an incredibly important issue in ME/CFS research) and differences in technique. I have enjoyed observing and learning from the patient community as they forensically dissect all the research as it comes out. The XMRV finding is a good news story for us. Whatever the final outcome, it has shone a much-needed spotlight onto biomedical research into ME/CFS. </p><p></p> <p>If XMRV turns out not to be causative, the critical need for well-selected patient cohorts for future biomedical research will hopefully have been highlighted. The problem of diagnostic criteria used to select patients for research is an ongoing problem in the study of ME/CFS - until it’s addressed it’s hard to see how giant leaps forward can occur. I’ve said it before and I’ll say it again, all researchers should be using the <a href="http://www.mefmaction.net/Portals/0/docs/ME-CFS-Consensus-Document.pdf">Canadian Consensus Criteria</a>. These were released in 2003 and it is outrageous that 7 years later this has not occurred. Yes, I’m a broken record. </p> <p>Dr David Bell, long-time stalwart, has issued a personal <a href="https://www.wpinstitute.org/news/docs/bell_fundraising_050110.pdf">appeal for donations</a> to the WPI. He expresses great concern that the politics surrounding ME/CFS are now stifling research into XMRV. He’s been around for many years and has seen this happen before. He says:</p> <blockquote> <p>“It is easy to dismiss my remarks to follow by saying that I am biased. And it is true, I am very biased and for twenty five years I have quietly sat on the sidelines believing that science will win out and true progress will be made. I am beginning to think this has been a great mistake. The profession I love has failed miserably.</p> <p><em>and</em></p> <p>“We cannot wait ten years for science to grind outs its conclusions.”<strong> </strong></p> </blockquote> <p>I urge you to read <a href="http://www.prohealth.com//library/showArticle.cfm?libid=15320">his letter</a> and especially to consider his request for $10 donations to the WPI. </p> <p>The XMRV discovery is such big news that I think we have to crown the USA as queen bee in the hive of interesting ME/CFS happenings this year. For more info on what’s new in XMRV see <a href="http://www.aboutmecfs.org/Rsrch/XMRVBuzz.aspx">XMRV Buzz</a>, updated by Cort Johnson. Interestingly, although they’re looking into it, the USA have not yet banned blood donations from people with ME/CFS as a precautionary measure to protect the blood supply, although other countries have. </p> <blockquote> <p><strong><i>THE CENTRES FOR DISEASE CONTROL. </i><em>NOT CONTROLLING THE SPREAD OF ‘CFS’ SINCE…OH, FOREVER.</em></strong></p> </blockquote> <p><b></b></p> <p>Meanwhile, at the CDC the times they are a changin’. Bill Reeves, boss of the CFS department, <a href="http://blog.aboutmecfs.org/?p=1218">finally got himself ousted</a>. Bill, Bill, we knew you well. We weren’t even surprised when immediately after the WPI’s XMRV study you said it would never be replicated. So pessimistic! Of course it wouldn’t be replicated, with you at the helm! Listening to your utterances was like watching the Titanic commence its slow descent into the deeps, in an alternate universe where the passengers were all safely on a life raft and waved at you happily as you disappeared from view. Goodbye and good riddance. </p> <blockquote> <p><strong><em>BIO BANKS</em></strong></p> </blockquote> <p>Two new bio banks are being established, each with slightly different approaches. This is awesome, bio banks represent exciting opportunities for future research.</p> <p>One is being established by the <a href="http://www.cfids.org/biobank/announcement.asp">CFIDS Association of America</a> and is called the <a href="http://www.solvecfs.org/SOLVECFSBIOBANK/tabid/99/Default.aspx">Solve CFS BioBank</a>. The second bio bank is being <a href="http://www.wpinstitute.org/research/research_biobank.html">established by the WPI</a>, who state it will be the “world’s largest ME/CFS sample repository”. </p> <p>Both projects look promising and are seeking donations. </p> <blockquote> <p><strong><em>CFSAC</em></strong></p> </blockquote> <p>The federal government’s <a href="http://www.forums.aboutmecfs.org/entry.php?343-Taking-Back-the-CFSAC">Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting</a> was held on May 10. As discussed on <a href="http://www.prohealth.com/library/showarticle.cfm?libid=15334&utm_source=SiteTracking&utm_medium=SiteTracking&utm_campaign=home_LatestNews">ProHealth</a>:</p> <blockquote> <p>“It’s a time of high tension in the ME/CFS community. Many wonder if and when CFS Advisory Committee (CFSAC) recommendations will be honored, whether meaningful research will be supported, and even whether this meeting may mark the Committee’s end (its charter expires in September).”</p> </blockquote> <p>Mary Schweitzer is brilliant at expressing the issues, her excellent testimony is well worth <a href="http://www.hhs.gov/advcomcfs/meetings/presentations/cfsac_testimony_may_10th_mary_schweitzer.pdf">reading</a> or <a href="http://www.youtube.com/user/jasonj59#p/u/1/uGvWHJahFW8">viewing</a>. Annette Whittemore’s testimony is also worth <a href="http://www.facebook.com/note.php?note_id=385797573025&id=154801179671&ref=mf">reading</a> or <a href="http://www.youtube.com/watch?v=DkEbYQHHUuw&feature=youtube_gdata">viewing</a>. All written testimonies released before the meeting are <a href="http://www.hhs.gov/advcomcfs/meetings/presentations/05102010.html">here</a>, and some spoken testimonies are <a href="http://www.youtube.com/user/jasonj59">here</a>. Since I put this post up, the whole shebang is now available <a href="http://www.youtube.com/view_play_list?p=131A8EEA7ECD72CD">on YouTube</a> and Hillary Johnson has written a totally fabulous and hilarious <a href="http://oslersweb.com/blog.htm?post=700212">post</a> on the meeting.</p> <h3 align="center">THE UK: PEDALLING BACKWARDS</h3> <p><b></b></p> <p>The UK had a shocker last year and have followed it up this year with another. If the USA is 2010 queen bee, then the UK has to be terrorist drone bee. The rate at which things are going backwards is alarming. Last year the NICE guidelines were upheld. That was bad. The NICE guidelines tell NHS doctors how to (mis)treat patients.</p> <blockquote> <p><strong><em>THE USUAL SUSPECTS</em></strong></p> </blockquote> <p>This year the psych lobby mounted a rapid response to the initial XMRV study, pumping out dubious negative studies faster than I eat Vegemite on toast. The ubiquitous <a href="http://www.newscientist.com/article/dn17947-chronic-fatigue-syndrome-linked-to-cancer-virus.html">Simon Wessely</a> was a <a href="http://podcasts.bmj.com/bmj/2010/03/05/chronic-fatigue-syndrome/">naysayer</a>: </p><blockquote>"We're not going to go doing more and more tests to find out what was the virus because, frankly, even if we found it there's nothing we're going to do about it. We're in the business of rehabilitation." </blockquote><p>As alluded to in the US section, the shrinks in the UK who have built careers on the psychologising of ME/CFS via the creation of diluted diagnostic definitions were quick to offer up ‘their’ patients for XMRV research. The outcome was predictable. The studies did not find XMRV. This is why veterans like Dr David Bell are rightly concerned about the future of XMRV research. </p> <blockquote> <p><strong><em>UNUSUAL SUSPECT</em></strong></p> </blockquote> <p>Recently the British General Medical Council, after 9 years of sniper fire, finally took down Dr Sarah Myhill, an ME specialist greatly valued by her patients. Although the establishment seem to have been after her for years, no patient had been harmed or made a complaint against her. An ongoing issue appears to be that some GPs are unhappy with her for prescribing B12 injections. It beggars belief that this would be the impetus for yet another complaint since she’s been cleared so many times before, and indeed the GMC didn’t run with that again until the most recent complaint, this time about her website, instigated by a member of an online community of (self-described) sceptics devoted to fighting ‘bad science’. The complainant expressed his <a href="http://www.drmyhill.co.uk/wiki/Category:My_GMC_Hearing#Our_Anonymous_Complainant_has_announced_himself_on_the_Internet">surprise</a> that the GMC paid attention to his email, albeit in a hostile discussion thread where members dismiss Dr Myhill as a quack and her patients as unthinking acolytes. I'm pretty sceptical myself on the whole, so to me all this is sad. If they had turned their attention to the actual bad science rampant in the study and treatment of ME/CFS, they could be a great force for positive change, rather than needlessly taking away a doctor whom <a href="http://www.greenwordsgrowing.com/2010/04/please-help-dr-sarah-myhill.html">many depend upon</a>. </p> <p>It is hard to explain to people outside the ME community how thin on the ground good ME doctors are, how important they are to the patient community - often a beacon in a storm of medical apathy. At the GMC hearing Dr Myhill lost the <a href="http://www.drmyhill.co.uk/wiki/Category:My_GMC_Hearing">right to prescribe</a>. </p> <blockquote> <p>“The judgement of the IOP was based on no charges, no evidence and no case. The IOP response was irrational and not evidence based. The sanctions are completely out of proportion to the allegations made.”</p> <p>- Dr Sarah Myhill</p> </blockquote> <p>Of my personal friends with ME in Australia, I barely know anyone who isn’t prescribed B12, so from this side of the pond it all seems bizarre. I was also astounded at the degree to which the GMC lack consistency. In January this year, a doctor involved in the death of numerous patients had a GMC hearing and <a href="http://www.dailymail.co.uk/news/article-1247000/Dr-Jane-Barton-escapes-struck-prescribing-potentially-hazardous-levels-drugs.html#ixzz0mkkazWwi">only lost the right to prescribe opiates</a>. In that case the GMC took into account the 200 letters of support from patients and colleagues. In Dr Myhill’s case, the GMC received 800 letters of support, but did not take these into account and went out of their way to state they made their judgement without “fear or favour”. There are far too many procedural anomalies in Dr Myhill’s case for me to detail here, but people have described the GMC as a ‘kangaroo court’ and unfortunately it seems an apt description. </p> <blockquote><strong><em>SMALL VINDICATION</em></strong></blockquote> <p>On the bright side, the <a href="http://blog.aboutmecfs.org/?p=1512">FINE trial failed.</a> Hallelujah. This was a long-term, government-funded study into nurse-led CBT and GET approaches (cognitive behavioural/graded exercise therapies) and cost over a million pounds. They could have used that money for something useful, like biomedical research, but instead they used it to find out what we could have told them all along. It’s immensely frustrating. Hopefully the failure of the trial will induce someone in their bureaucratic ivory tower to see sense very soon. As Invest in M.E. <a href="http://www.investinme.org/Article-015%20FINE%20Trials.htm%20">said</a>, “The FINE trials and the <a name="PACE">PACE</a> trials seem to be the two ugly sisters of MRC policy on ME - leaving biomedical research eternally to play a Cinderella role.” </p> <blockquote> <p><strong><em>LIGHTS, CAMERA…</em></strong></p> </blockquote> <p>In other good news in the UK there is a <a href="http://www.greenwordsgrowing.com/2010/04/doco-about-me.html">doco about M.E.</a> being made which looks like it’s going to be a ripper. Stay tuned.</p> <h3 align="center">AUSTRALIA: NOTHING TO SEE HERE</h3> <p><b></b></p> <p>In light of the <a href="http://news.theage.com.au/breaking-news-national/cfs-link-prompts-blood-donation-review-20100420-sr25.html">potential XMRV link</a>, the Australian Red Cross <a href="http://www.donateblood.com.au/news-detail.aspx?IDDataTreeMenu=33&ID=390#">amended their blood donation guidelines</a>. Anyone ever diagnosed with ME/CFS is indefinitely deferred from making donations, whereas previously patients were only banned until ‘full recovery’. I think the revised approach is prudent, it’s better to be safe than sorry when it comes to protecting the blood supply.</p> <p>The Australian Red Cross ban on donations has been reported in some places as if this were new, but the policy of not accepting donations unless an ME/CFS patient had made a full recovery, which had to be confirmed in a letter from the treating doctor, is long-standing. They will review the current arrangement in 2 years time. </p> <p><a href="http://mecfs.org.au/">ME/CFS Australia</a> has a new management structure and is now to be <a href="http://mecfsaustralia.wordpress.com/">administered by the Victorian group</a>, which has access to more resources. ME/CFS Australia has a good blog (though infrequently updated, not that I can talk) and released a concise article about how dismally the Australian<a href="http://mecfsaustralia.wordpress.com/2009/11/11/health-system-failing-people-with-mecfs/"> health system fails people with ME/CFS</a>: </p> <blockquote> <p>“Government funded ME/CFS research is approximately $1 per patient (compared to $400 for each AIDS patient)…</p> <p><em>and</em></p> <p>…Despite ME/CFS becoming prominent in the last 25 years, there are no Government-funded specialty programs treating people with ME/CFS (there are some fatigue clinics) and there is no Government-funded clinical or epidemiological research being conducted in Australia.”</p> </blockquote> <p>Charmed, I’m sure. They care enough to stop healthy people receiving blood from our pestilent selves, but are otherwise leaving us to rot in our bedrooms.</p> <h3 align="center">NEW ZEALAND</h3> <p>New Zealand has also <a href="http://www.voxy.co.nz/national/chronic-fatigue-set-disqualify-blood-donors/5/45805">reviewed their blood donation guidelines</a>:</p> <blockquote> <p>“New Zealand's blood banks plan to reject donors with a record of chronic fatigue syndrome (CFS). The move follows research overseas which has raised concerns about the potential for a recently identified virus XMRV to spread through blood transfusions.”</p> </blockquote> <h3 align="center">CANADA: WE LOVE YOU</h3> <p><b></b></p> <p><b></b></p> <p>Canada has also <a href="http://www.healthzone.ca/health/newsfeatures/article/791225--virus-causes-canadian-blood-service-to-ban-chronic-fatigue-donors">banned blood donation from people with ME</a>, and were the first country to do so. This year <a href="http://www.prohealth.com/library/showarticle.cfm?LIBID=15283&UTM_CONTENT=Google%20Reader&UTM_SOURCE=feedburner&UTM_MEDIUM=feed&UTM_CAMPAIGN=Feed:%20Prohealth_me-cfs%20%28ProHealth%27s%20ME/CFS%20Research%20and%20News%29">Canada officially recognised ME as a neurological illness.</a> This is in alignment with the World Health Organisation’s categorisation of the illness since 1969.</p> <p>They already have the world’s best guidelines for diagnosis and treatment, and now ME is formally recognised as a neurological illness which has major implications for welfare support and access to medical care. I'm sure it's a long way from being all roses for patients over there, but mad props for big steps in the right direction. Let’s all move and become patients of Dr Byron Hyde, shall we? I’ll start learning the anthem.</p> <h2></h2> <h3 align="center">THAT’S ALL, FOLKS</h3> <p>I haven’t covered everything, just the major stories, and even then not in depth. Feel free to add any additional 2010 ME/CFS happenings in the comments. What have I missed that deserves mention?</p> <p>Thanks for taking the time to read. I know this is not everyone’s cup of tea, and to be frank, I wish it weren’t mine, either, but I am passionate about fighting for improved quality of life for people with ME. When we’re both up to it, my good friend and I have short chats, he is very ill and sick in bed for some years now. His illness has progressed from moderate to severe, despite his diligence in seeking treatment. He is brave, never complains, and jokes that ‘CFS’ is short for ‘Chronically F***ed Situation’. I feel helpless in the face of his suffering and would do anything to be able to wave a magic wand to make things better. I’d love for him to be able to surf in the ocean, build things, drive his ute wherever he wants. It’s ordinary people like us who get this disease: anyone, any day, out of the blue. It was me, it was him, it could be you. Our story could be your story. </p> <p>It doesn’t have to be this way. Good research can and will help, I dearly want to see progress in my lifetime. Please consider donating time or funds to one of the research organisations mentioned in this post, or doing whatever you can to raise awareness. If you blog, tweet or chat on facebook you can mention ME Awareness. I also have some blue ribbons, if anyone in Australia would like to spread the blue ribbon love, <a href="http://www.greenwordsgrowing.com/p/contact.html">email</a> a postal address and it’ll be on its way. (I have 2 left!)</p> <p><a href="http://lh5.ggpht.com/_hN6vrv9jvJU/S_nLcP4T_BI/AAAAAAAAAkE/j4txeCZksyA/s1600-h/blogging%20for%20me%20%26%20cfs%20awareness%5B3%5D.jpg"><img style="border: 0px none; display: block; float: none; margin-left: auto; margin-right: auto;" title="blogging for me & cfs awareness" alt="blogging for me & cfs awareness" src="http://lh5.ggpht.com/_hN6vrv9jvJU/S_nLc7IQa0I/AAAAAAAAAkI/7lsgVpFcR2E/blogging%20for%20me%20%26%20cfs%20awareness_thumb%5B1%5D.jpg?imgmax=800" border="0" height="400" width="200" /></a> </p> <p><a title="http://www.donateblood.com.au/news-detail.aspx?IDDataTreeMenu=33&ID=390#" href="http://www.donateblood.com.au/news-detail.aspx?IDDataTreeMenu=33&ID=390#"></a></p>greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com14tag:blogger.com,1999:blog-11110655.post-25663819252096919012010-04-21T10:49:00.012+10:002010-06-21T10:42:37.174+10:00Doco about M.E.<p>Been meaning to post this for a little while, but got <a href="http://www.greenwordsgrowing.com/2010/04/please-help-dr-sarah-myhill.html">distracted</a>.</p> <p>My friend Nasim <a href="http://velo-gubbed-legs.blogspot.com/2010/03/film-about-me.html">recently blogged about</a> an impending doco; it looks like it’s going to be excellent. Nasim and others are interviewed, and our long-time champion Professor Malcolm Hooper is absolutely sterling. </p> <p>Watch the <a href="http://www.whataboutme.biz/index.html">trailer</a>! </p> <p>And if you’re inspired, you can get <a href="http://www.whataboutme.biz/getinvolved.html">involved</a>.</p> <p>I don’t want to detract from the trailer, but if you’re interested in some historical context about the Lake Tahoe outbreak, here’s a longer <a href="http://www.rescindinc.org/primetime1996.wmv">Prime Time Live story on ME/CFS</a>, circa 1996. When it was shown in the US I’d been sick for a year - I wish I knew all this stuff back then, rather than feeling stranded in the wilderness of illness, trying to understand how I’d evaporated from my normal life and become a wraith who drifted in and out of a bedroom. </p> <p>Watching both bits of film, one made so many years later, it’s bizarre to see how little has changed. Why do we persist with advocacy, despite the decades of apathy? I like what the first trailer says:</p> <blockquote> <p><em>“Why should we care?</em></p> <p><em>Because it could be you.”</em></p></blockquote>greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com8tag:blogger.com,1999:blog-11110655.post-70298084899547496962010-02-24T12:00:00.003+10:002011-08-30T14:15:53.595+10:00Sound familiar?From a recent article about Hepatitis C:<br /><blockquote>McGuckin confirms the disapproval directed at people with HCV. “It really does exist, in social life, amongst some nurses, doctors, and other health professionals, and of course in the workplace. There’s a distinction between ‘innocent victims of disease’ and people who are deemed to have only their behaviour to blame. It’s very discouraging.”</blockquote><a href="http://www.theaustralian.com.au/news/features/bad-seed/story-e6frg8h6-1225832273087">Kate Legge, ‘Bad Seed’, Weekend Australian magazine</a>, Feb 20-21 2010, p 15greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com0tag:blogger.com,1999:blog-11110655.post-17895553604240549662010-02-15T18:30:00.012+10:002010-04-09T08:05:50.817+10:00Victory garden<p><a href="http://lh4.ggpht.com/_hN6vrv9jvJU/S4-b9kWulzI/AAAAAAAAAiY/RuXslqW5-aU/s1600-h/soft%20and%20faded%5B5%5D.png"><img style="border: 0px none; display: block; float: none; margin-left: auto; margin-right: auto;" title="backyard rose" alt="sea foam rose in backyard" src="http://lh3.ggpht.com/_hN6vrv9jvJU/S4-cCXr61bI/AAAAAAAAAic/VG3AWjOGGgU/soft%20and%20faded_thumb%5B3%5D.png?imgmax=800" border="0" height="381" width="400" /></a> </p> <p>If I recovered next week I would garden from morning ‘til night. As things are now, I settle for <em>thinking</em> about gardening from morning ‘til night. It’s a lovely thing.</p> <p>I’ve been flicking through a couple of Edna Walling books and wondering if I’ve found one of my garden soul-mates. She loved erigeron (seaside daisy) - until now I had never come across a garden writer, or anyone at all for that matter, who loves erigeron like I do. Edna also loved birch trees, dry stone walls, and bossing people around. Say no more. </p> <p>I germinated some erigeron and my husband planted them out. The seedlings are doing splendidly and flowering with gusto. I show them to visitors, but perplexingly, there have been no cartwheels in honour of their brilliance. </p> <p>When I was a whipper-snapper I thought gardening was boring, although I loved my grandmothers’ gardens. </p> <p>Granny (maternal side) and Papa’s garden is a cottage garden in the true sense - a mixture of productive and ornamental plants. It tells the story of their life together and emanates simplicity, charm, and grace. There’s a small vineyard in one corner, a nod to Papa’s profession as a viticulturist. They are instinctive and knowledgeable plants-people, if I grow up with a skerrick of their combined knowledge I’ll be thrilled. Their garden is my favourite place in the world. When I travel in my mind to my happy place, that’s where I go. I'm not sure I'll see it again in this lifetime - I'm in Queensland and they're in South Australia, but it will always be my sliver of heaven.<br /></p> <p>Nana (paternal side) and Grandpa’s garden in Victoria <a href="http://www.greenwordsgrowing.com/2009/02/flames-made-ghost-of-everything.html">was</a> more formal. Beautiful mass-planted roses by the house, agapanthus along the drive. A whacking great bunya pine. I never saw either of them gardening, Nana worked full-time and Grandpa wasn’t well so I think they had a man who came to help, but Nana adored the garden. I remember helping her water the roses, she was always reminding me to give them a <em>nice long drink</em>. I also remember splashing in the bird bath as a baby, no matter the people who say you can’t remember things that far back. </p> <p>In my early 20s I travelled from Queensland to Adelaide to convalesce at Granny and Papa’s, and spent many hours on the cane lounge gazing out the window at the hollyhocks, quince tree, lavender, and all the other wonders. On my return home, my mother gave me some herbs to grow in pots on the verandah. I toppled into garden love. As love so often does, it took me by surprise. I was much stronger than I am now and could garden a little bit, though no heavy work. I used to read the same <a href="http://diggers.com.au/">Digger’s</a> catalogue for three hours at a time. My passion continued fully-fledged until I had the Great Relapse of 2004 which coincided with an apartment-living lifestyle and the prison of bed. Along with any activity not related to basic survival, my garden involvement shrivelled up. In 2005 I started this blog, a little garden of words, instead. </p> <p>Now I’m a born-again gardenista, working on finding ways to participate in a garden of dirt and leaves and weeds. My body is still recalcitrant - very much so, but I love gardening with my eyes. I’m the garden sentinel, or maybe the garden is mine. There is something so perfectly hopeful about a growing plant. Each bud that emerges is a victory, an unspeakable beauty, a bold solace, a declaration of the natural rhythm of growth and expansion. The plants are generous enough to share all that with me. I thank them. </p>greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com14tag:blogger.com,1999:blog-11110655.post-63940012245333735342010-02-12T12:00:00.005+10:002010-02-12T20:41:36.569+10:00Position Vacant: Robot<p>Seeking a robot to be my arms and legs. Like Inspector Gadget, except you obviously have your own robot body separate from mine, so not really like Inspector Gadget at all. Must be competent and cooperative. Willing and able to work in garden, cook, type, sew cushion covers, turn pages of books, keep secrets, make beds, wield a hairdryer, memorise telly guide, brew tea, etc. Tap dancing skills a bonus. Cute robotic squeaks acceptable, but no disputes relating to why something should be done differently to how I want it done. If you accept the position I am the benign domestic dictator and you my robot underling. We will start with making pesto. We can share the pesto. </p>greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com13tag:blogger.com,1999:blog-11110655.post-58922640224802519672009-12-23T13:07:00.003+10:002010-08-22T00:02:30.895+10:00The silly season<p><a href="http://lh4.ggpht.com/_hN6vrv9jvJU/SzGJdFxeH-I/AAAAAAAAAgg/QPDfk_ztYaw/s1600-h/IMG_4394%5B4%5D.jpg"><img style="border-right-width: 0px; display: block; float: none; border-top-width: 0px; border-bottom-width: 0px; margin-left: auto; border-left-width: 0px; margin-right: auto" title="xmas lights on house, inc the word 'shelby', palm trees and a kangaroo" border="0" alt="xmas lights on house, inc the word 'shelby', palm trees and a kangaroo" src="http://lh6.ggpht.com/_hN6vrv9jvJU/SzGJeDbImtI/AAAAAAAAAgk/Rit70Srq8gs/IMG_4394_thumb%5B2%5D.jpg?imgmax=800" width="500" height="375" /></a> </p> <p>This year I’m not being silly about it. Last year I had extreme post-festive payback. As March rolled around and I emerged from the dungeon of very low functionality, I concluded It Wasn’t Worth It. This year I’m setting boundaries, mostly with myself. I’m generally the culprit who needs reigning in. I’m in a prolonged crash anyway so it’s not too hard. </p> <p>No writing of cards, no presents – the functional time involved in selecting, online shopping and wrapping is just too much. No meals with hordes of people. People are more than welcome at our place, but they have to bring the tucker. </p> <p>Yes to a decorated tree, eating far too much, and our annual tradition of a short evening drive to see the lights on people’s houses. By evening the stinking heat of the day has subsided a little, and you gotta get out sometimes. You gotta get out so you can try to figure out who or what 'Shelby' is (the family dog?), and be impressed that the same household loves <a href="http://www.holden.com.au/home">Holden</a> so very much. </p> <p><a href="http://lh4.ggpht.com/_hN6vrv9jvJU/SzGJex0TgbI/AAAAAAAAAgo/YOMK557Qisc/s1600-h/IMG_4393%5B5%5D.jpg"><img style="border-right-width: 0px; display: block; float: none; border-top-width: 0px; border-bottom-width: 0px; margin-left: auto; border-left-width: 0px; margin-right: auto" title="xmas lights on house, inc the word 'holden' (brand of car)" border="0" alt="xmas lights on house, inc the word 'holden' (brand of car)" src="http://lh6.ggpht.com/_hN6vrv9jvJU/SzGJfy0RQDI/AAAAAAAAAgs/5K4P1PGzGc4/IMG_4393_thumb%5B3%5D.jpg?imgmax=800" width="500" height="375" /></a></p> <p></p> <p>I just love unabashed enthusiasm. There’s something about the effort people go to in putting up all these lights that’s absolutely heart-warming. </p> <p>There’s one house that’s my favourite. I tried to take a photo but it turns out it’s quite hard to photograph lights, especially from a moving car. In many ways the display is more unassuming than others, but they have strings of white fairy lights draped on some kind of frame over their whole yard, creating a magical twinkling ceiling. The owners always stand out the front, and if you drive past slowly, the man calls out, “You’re welcome to come in and have a look!” </p> <p>For obvious reasons I’ve never gotten out to have a look. But every year I call out the car window, “Yours is my favourite!”</p> <p>‘Tis the season. </p> greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com8tag:blogger.com,1999:blog-11110655.post-67331813624064895332009-12-04T11:23:00.006+10:002009-12-09T09:24:05.101+10:00First tomato flower<p>in the new garden, from a plant I grew from seed. It makes me very happy.</p> <p><a href="http://lh3.ggpht.com/_hN6vrv9jvJU/SxhkiE8yQwI/AAAAAAAAAf4/-wZA97AhhQY/s1600-h/IMG_3904%5B5%5D.jpg"><img style="border-right-width: 0px; display: block; float: none; border-top-width: 0px; border-bottom-width: 0px; margin-left: auto; border-left-width: 0px; margin-right: auto" title="tomato flower" border="0" alt="tomato flower" src="http://lh5.ggpht.com/_hN6vrv9jvJU/SxhkjCTolAI/AAAAAAAAAf8/dbozhFLyPxA/IMG_3904_thumb%5B3%5D.jpg?imgmax=800" width="400" height="412" /></a></p> greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com5tag:blogger.com,1999:blog-11110655.post-81116125570866880732009-09-02T09:31:00.006+10:002009-09-14T06:48:54.756+10:00New nest<p>We’re moving, due to the highly thrilling fact we’ve bought a house. Which means an amazing thing: a garden. I loved gardening long before it was socially acceptable, even somewhat trendy, for younger people to appreciate the art. These days <a href="http://www.jamiedurie.com/">Jamie Durie</a> and his ilk are on the telly, extolling the many virtues. But back in the olden days, when I was at a party one evening, a guy looked at me askance and said: <em>I hear you’re a bit of a Don Burke, eh?</em> And then I told him about my sweet corn.<br /></p> <p>I may have already been purchasing seeds on the internet and obsessively perusing mail-order catalogues. <a href="http://www.greenwordsgrowing.com/2009/01/heres-to-good-memories-in-2009.html">I told you it was going to be a good year</a>, and when I said that, I didn’t know a house and garden were in the offing. Housing has become ridiculously expensive in Australia (second only to Spain and Ireland, according to <a href="http://www.theage.com.au/national/property-avoids-the-plunge-at-a-cost-20090822-euhk.html">this article</a> my friend told me about), and with one income and hefty health bills, we’d long accepted that we’d be tenants until further notice. Then there was a global financial crisis, interest rates went down, and we went <em>oh yes,</em> and thought we’d give it a go. It was one of those ‘now or never’ scenarios. It has been one of my dearest wishes to one day have our own place, I can scarcely believe it’s true. </p> <p>I’ve designated myself boss-lady in charge of seed raising. Brace yourself for lots of seedling reports, after I recover from the transplant shock. </p>greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com10tag:blogger.com,1999:blog-11110655.post-6488127194761319602009-08-26T11:23:00.006+10:002010-02-15T10:10:33.197+10:00Business as usualExisting diagnosis is intact. I will admit to a flash of disappointment about this. Although the new idea seemed a tad unlikely due to the rarity of the condition, it was a reasonable <a href="http://www.greenwordsgrowing.com/2009/08/if-wishes-were-fishes.html">hypothesis</a>. And all in all, despite the general unpleasantness of the process, I’m grateful when anyone puts their mind to looking at things afresh – treating the patient, not the diagnostic label.<br /><br />I still have a bit more testing to organise, but it’s in the realm of making absolutely positively sure there’s not something else, rather than a potential new lead.<br /><br />It’s amazing what a difference a husband makes – he came with me to the most recent appointment and Mr Hostile Doctor had a personality transplant on the spot. In fact, afterwards my husband described the doctor’s demeanour as sobered and confused. I started to feel compassion for him, the poor man has a list of very strange test results to try to make sense of.<br /><br />Welcome to my world, Mr Doctor. It’s a parallel universe, the weird medical version of Alice in Wonderland.<br /><br />Next post: happy news, and nary a mention of health matters.greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com9tag:blogger.com,1999:blog-11110655.post-31192287827171812972009-08-19T23:37:00.007+10:002013-07-25T21:04:25.631+10:00If wishes were fishesI was referred to a consultant physician and endocrinologist for a third opinion on some medical things. The appointment was unexpectedly awful, like being in the witness box for a dreadful crime. The crime of illness. He interrogated me with gems such as: "<i>So you’ve done absolutely nothing for the last 12 years, is that what you’re telling me?"</i> and ordered every test known to humankind. He was the epitome of rude skepticism, openly challenging everything I told him.<br />I returned home, disappointed to have used a precious trip out of the house on such an aggressive encounter, shed a tear under the doona, then pulled myself together and started organising the tests. It’s taken months and great expense to work through the list. I thought I already had the most tested bodily fluids in Australia, but apparently not.<br />He has since conferred with his learned colleagues at a posh hospital interstate (once my results started to come in he must've seen I wasn’t such an unreliable witness after all) and they collectively think I may have <a href="http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=dbh">a rare condition with lots of syllables</a>. As my GP joked, he’d never heard of that one before, but there’d be a support group for it in America, ha ha. No final results back yet, but surely I’m not the only person with a specific diagnosis who fervently wishes to find out they’ve got something else? Something more treatable? I don’t mind how hostile the physician is if he figures something useful out. My GP and I have our fingers and toes crossed.<br />I’ve looked this condition up and there <i>is</i> a medication for it. Hope springs eternal. I always suspect that around the next corner is a breakthrough, I’m incorrigibly optimistic. Along the way the cardiologist told me, among other tachycardic tidbits, that the secondary <a href="http://www.greenwordsgrowing.com/2006/12/yellow-wiggle.html">OI</a> or <a href="http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome">POTS</a> component of things is much worse than we realised, which in his opinion explains the ongoing symptom severity and extreme lack of functional ability.<br />Memo to my heart: settle down and stop acting like I’m swimming away from a shark. Let’s sway gently through the ocean grass fronds like a seahorse instead. It’ll be nice. greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com8tag:blogger.com,1999:blog-11110655.post-64434999469054909942009-07-16T08:23:00.001+10:002009-07-16T19:51:57.423+10:00Wall cloud<p><a href="http://lh6.ggpht.com/_hN6vrv9jvJU/Sl5X4MC_cKI/AAAAAAAAAc4/Ma3jEZbSzIU/s1600-h/IMG_2710-1%5B8%5D.jpg"><img style="border-right-width: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; margin-left: 0px; border-left-width: 0px; margin-right: 0px" title="wall cloud" border="0" alt="wall cloud" align="left" src="http://lh5.ggpht.com/_hN6vrv9jvJU/Sl5X5XPBUhI/AAAAAAAAAc8/07Ap7zGanLk/IMG_2710-1_thumb%5B6%5D.jpg?imgmax=800" width="400" height="278" /></a> </p> <p align="center"> </p> <p align="center"><font size="1"><font face="Trebuchet MS"><font color="#000000"></font></font></font></p> <p align="center"> </p> <p align="center">floating on the wall</p> <p align="center">beside the office bed</p> <p align="center">dreaming cloudy dreams</p> <p align="center">drifting near my head</p> <p align="center"> </p> <p align="center"> </p> <p align="center"><font color="#ffffff">,</font></p> greenwordshttp://www.blogger.com/profile/06503951554199147368noreply@blogger.com5