Category Archives: Fibromyalgia

whatismesummary – The Hummingbirds’ Foundation for M.E.

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whatismesummary – The Hummingbirds’ Foundation for M.E.

whatismesummary – The Hummingbirds’ Foundation for M.E..

.What Is Myalgic Encephalomyelitis?

Dr Byron Hyde in Canada has definite ideas

we assume he uses good science

to be fair most of what I’ve read  seems to me to be very good research.

www.nightingale.ca

where you shall find his link to his Nightingale  Definition of M.E….a pdf file.

then there’s

http://www.name-us.org/DefinitionsPages/DefOverview.htm

with links to Drs Dowsett & Ramsay

& others.

.Dr Rob Yates, who worked in the Sudan in the midst of their famine keeping as many children & babies alive as he could Later he worked at the local Aboriginal Co-op where, one Sat arvo he was on call doc and took a phone call from my then partner.

He came to the house & after taking a look at me lying collapsed in the bed and rang an ambulance and the hospital and I was admitted pronto!  I have very vague recollection of that  day, except relief to have finally found a doctor who didn’t just dismiss me as hysterically neurotic.

He later said if I’d been left in that bed another 24 hours without treatment I’d have died…3 & a half years: bronchitis, pneumonia lung infections coughing blood diarrhoea vomitting and so so so much pain

and not one so called doctor in the area would put a stethoscope to my chest.  just tell me to go back to the psychiatrist…and the shrink who was crazier than his patients saying What are you coming to me for? Go see a GP.

And this almost killed me.

To Dr Rob Yates I owe my life.  He not only made sure I didn’t die just yet, he also got me out of bed, onto my feet, move into my own house (away from the ex) and take up the reins of being a real mother to my toddler daughter..

Under his care my illness gained a name.

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Update (Finally)

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It has been a long long winter, a winter that continued well into late spring.  Month after month of freezing rains, downpours that went on for days & weeks on end.  It was like full-blown monsoon, except not warm rain, but icy in huge drops pelting down. The freezing gale-force winds driving them sideways. Snow & hail melting as it slid down the window glass.

So much water for so long roads made unpassable, the railway line washed out causing all trains cancelled for months, & on-going flooding including the  Yallourn coal mine filling with millions of litres of water as the mine walls collapsed and Latrobe and Morwell Rivers fell in…and they are still struggling to drain the opencut…or Lake Yallourn as the locals have dubbed it.

We live on the side of a hill and walking to the veg garden, the compost heap or the back fence was like trekking through a swamp, feet sliding & sinking into grass covered wet mud.  It was amazing, after so long a drought, to each day see how the ground moved, holes appearing where there had been small hillocks and small hillocks replacing dips & holes in the lawn. 

Lawn?  What lawn?  It was impossible to mow, too wet, too muddy, the mower sinking into the boggy ground, hardly a day without more downpours. Once Spring arrived (if spring is what you can call it, a couple of days with 40C temps followed by more weeks of wintry gales) the grass took off, growing more than four feet in places.  It just about hid the compost, nor once cut was the grass any good as compost because it all went to seed.

Yet the leeks flourished.  Growing tall and strong.  Some we used in soups but most of the 40 plants are still out there, now sending up flower stems.  These will look so pretty when the flowers bloom.

It was a hard winter for me as well.

I’ve never been much of a cold weather person. Since getting Myalgic Encephalomyelitis and Fibromyalgia cold weather is sheer torture. And this past winter was one of my worst.

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more later.  i need to rest.

Overdoing it!

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It was a lovely day outside today. High cloud, brilliant sunshine and only a whisper of  cold breeze.

I spent as long as I could enjoying the sunny day.

I took a fork and turned over a garden bed…it’s about 3’x 4’area.  Many months ago I dug out the weeds & overgrown grass then put a thick layer of grass clippings, mulching to kill weed regrowth.  So it’s been overdue for digging it over again.  The soil is not too wet.  Not exactly dry either but okay for forking. Hopefully sometimes on the weekend I’ll be up to putting some bulbs in.

On the front porch there’s a bag of flowering bulbs…five different kinds, a handful each .  I bought them at a market stall in Trafalgar and have had them so long I can’t remember what sorts of flowers they are.

Grandma’s Magical Mystery Garden.

It’s a mystery what plants I’m growing…oniony things that turn out to be 40 leeks & two garlic plus a pineapple happily surviving the frosts. Oh and the spuds too, born from peelings  And now tulip/dutch/iris/jonquil/maybe daffs or even hyacinth…have to grow them to find out…lol. 

 

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Week’s End.

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WEEK’S END.

It’s Friday and another wet, cold, rain falling in gentle flurries.

There is snow falling on Mt Baw Baw…and on other mountains in the High Country I should think. A pretty winter wonderland soon to be filled with skiers. Best viewed on a postcard.

I woke up feeling like I’d been run over by the proverbial Bondi Tram.  The bed’s been a torture rack.  How can a soft mattress be so hard?  Sore in a lot of places, a lot of sharp pain deep in my hips.  Had to get up and make the coffee.  Walking around the kitchen, slowly loosening up my spine & hips & shoulders too, stretching ever so carefully while the kettle boils…gritting against protesting tendons & muscles. Ouch, ouch ouch!

It takes about 2 hours to coax my body into moving without excess pain.  Slowly but surely I can flex most fibres with less & less pain.  Pain never goes away completely…ever…today though I’m okay without the morphine. At least, for a while yet.

I made it outside…wandered down to the compost heaps, circled the tomato bed & back…twice.  It may be a cold wet day but the view across to the Jeeralangs is wonderful, with thick black clouds roiling across the hills.   I took a couple of photos…and patted Puss the miniture panther, who came to say hello. The sun came out & warmed my face…the rest of me was well covered. 

Inside I washed a couple of dishes, managed to dry & put away the cutlery (mostly teaspoons).

another cuppa and back to bed…where this laptop is set up on an over-bed trolley…relaxing with Bob as he wakes up.

In a while, I’ll wander back to the kitchen…probably on my way through on one of my multiple trips to the loo…and check out the cupboards for lunch.  There’s fresh bread & some cold meat…or I could attack the strawberries.  Or both…depending how I feel.

Bob has just left for work.  He may be back later, about 6 or 7-ish…to eat …maybe tomato soup & cold lamb sangers…sounds good…then maybe around mid-night if it’s not too busy. He’s a taxi-driver, and a very good one (& I’m only a little bit biased).  He is also a good man…a rarity I treasure…Amazing to think we’ve been together 11 years. And still enjoying each others company…well…most of the time.  Bob works long long hours night & day shifts, most weekends.

More about him later………..maybe.

probably.

for sure…

It takes a fair while to type this…and lots of backspacing & other corrections.

I love typing…some people love playing pianos & other keyboards…but the qwerty keyboard is my thing.  I used to be able to type 65 to 70 wpm…my shorthand was never that fast…lol

I would type to music…keeping the rhythm, the keystrokes dancing to the beat.  Can’t do that now…not yet….one day I will relearn the skill…maybe.

One of the first signs of M.E. was suddenly mis-typing words…such as department…& it kept coming out on the paper as departmnet…time & time again I found myself having to backspace & correct…time & again I’d type it again…departmnet.  I later found this was due to the nerves in my right arm firing quicker than those in the left. d=left hand e = left hand p = right a=left r= left t= left m = right  e = left n = rightt t = left.

and the n right stroke kept hitting the key quicker the e left stroke.

At one stage the electrical activity was looked at by a neurologist…Nerve Conduction Test. 

I thoroughly do NOT recommend this one.  It was soooooo incredibly agonising painful…yet the neurologist, after affirming the slowed nerve conduction…lost interest.  He was too totally into Epilepsy…and M.E. wasn’t on his agenda.  Not his field of neurology.  Still at least he proved I didn’t have a pinched nerve in my carpal tunnel…though my GP actually asked for the nerve conduction test to investigate my neck & wasn’t done.  But there’s no way I’m volunteering again to be zapped & zapped with excruiating electrical pain.

There’s no cure anyway…so why bother.

Hmmm….yep. More later:

Perhaps!!!