let's start at the very beginning

Thursday, 8 February 2007

The Yellow Wiggle

Greg Page, the artist formerly known as ‘The Yellow Wiggle’, has sadly had to hand in his skivvy. After being unwell for quite some time, and going through the rigmarole of being repeatedly told he was perfectly healthy while becoming progressively more disabled, he was finally diagnosed with orthostatic intolerance:

Page said he was suffering from a chronic condition called orthostatic intolerance.
When he stands up his heart doesn't pump enough blood around his body.
The Australian, 30/11/06

As awful as it is for Greg Page, it's often beneficial for others when someone famous develops an obscure condition. It prompted a good article [no longer online] in the health section of the Weekend Australian.
Very broadly speaking, orthostatic intolerance is when the body responds abnormally to being upright. There is a profound drop in blood pressure, the heart rate is substantially elevated (tachycardia), and blood flow is significantly impaired. It can cause a range of debilitating symptoms – including loss of consciousness when upright, extreme dizziness, blurred vision, cognitive problems due to lack of cerebral blood flow, slurred speech, chest pain, difficulty breathing, crushing fatigue, nausea, exercise intolerance, palpitations, pain across the shoulders and into the neck (referred to as ‘coat-hanger pain’), weakness in the legs, and migraines. Attractive blue toe-nails from blood pooling in lower limbs is the least of the issues. (I sort this one out by wearing nail-polish, the other symptoms are trickier.)
Orthostatic intolerance is a medical condition in and of itself, but is also commonly found in ME/CFS patients, and makes sustaining upright activity problematic, if not impossible, in severe, chronic cases. I have Postural Orthostatic Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension (NMH). My OI is a damn nuisance and a major contributor to the amount of time I’ve spent in bed over the years.
The doctor people are trying to see if we can get me some more verticality. So far we haven't had great success, but I hope we'll get there if we persist. During a recent appointment my doctor was assessing my blood pressure and heart rate while I briefly stood, and as the dials swung wildly in the wrong direction, yelped, "Hold onto something, I don't want you collapsing on me!"
I wouldn't have collapsed, I’m down with the warning signs. I lay down on the nearest horizontal surface whenever and wherever necessary. I have lain on the ground at major tourist attractions, at rock concerts and music festivals, on the tiles at the hair-dresser, in the hallway at the pathology lab, on the seats of all types of public transport – I’ve even had a nice lie down on hospital chairs while escorting someone else to Accident and Emergency. I might look like a goose but it’s safer than breaking bones (or worse) from passing out unattended when the body decides it needs to reboot.
It's been handy for explaining to kids the reason I'm perpetually horizontal, they know all about the Yellow Wiggle. A five-year-old I know nodded wisely, and clarified, "What about when you’re sitting, what happens then?" (A more astute question than most adults ask!) I told her that sitting wasn't as bad as standing. She nodded again, then asked, "Do you like my necklace?" I did. It was cute, a white plastic heart, painted with a rainbow, dangling from a chain.
I'm genuinely sorry that Greg Page is ill, and can no longer be a Wiggle, and I hope he finds some answers. I should find him a consolation necklace, I know where you can get nice ones with hearts and rainbows - I'll send Dorothy the Dinosaur out shopping.
(If you're unfamiliar with the Wiggles I can arrange a long car trip with small children for you - you'll be singing "Wash your face with orange juice!" for days. The Wiggles are a group of four children's entertainers who wear coloured skivvies, dance and sing, have a support cast of characters, travel the world performing to packed concert halls of joyous three-year-olds, and I believe they’re Australia's highest earning entertainers.)
Further reading:
Orthostatic Intolerance and ME/CFS – if you have ME/CFS I recommend asking your GP about testing for OI. Not everyone with ME/CFS has it, but if you do, treating the OI may help improve your quality of life. Dr Peter Rowe at Johns Hopkins is doing a lot of research into OI and ME/CFS. OI is a broad term which can include both POTS (postural orthostatic tachycardia syndrome) and NMH (neurally mediated hypotension).
Patient info sheet from Austin Health, Victoria
Orthostatic Intolerance on medscape – long, very thorough article.
The Wiggles website - Greg Page and Orthostatic Intolerance
Treatment of Orthostatic Intolerance
Orthostatic Intolerance Syndromes
Greg Page Fund for OI
You can also search for info using the term ‘dysautonomia’.

Thursday, 1 February 2007

An accidental curmudgeon

I'm trying to decide whether I've become an ME fundamentalist or an accidental curmudgeon.

Why did I pounce on the bad things about the article in The Australian, and not emphasise the good? It mentioned the Canadian Guidelines. That's a very good thing. Some people rebutted the GET and CBT tripe. That was good too. Overall, a lay-person reading that article would come away with a far better understanding of the condition than many articles provide.

I don't want to be like the critics in the paper who sit on their high horses and gallop triumphantly over everyone else's work.

Yet it's hard to explain how crushing it is, when you're bedridden with a horrible illness - seconds minutes hours days weeks months years rushing past like a river - to have the experience described as 'yuppie flu' and 'chronic fatigue', and people endlessly discussing whether it's real or not.

I dislike fundamentalism or extremism of any kind. I often reassess my ideas. But pain has ground me down. I'm probably a curmudgeon, at the least.