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Australia: One woman's battle with chronic fatigue

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
One woman's battle with chronic fatigue

By By JODIE STEPHENS
June 29, 2013, midnight
GEORGIA Eastley never had a chance to finish high school, celebrate her 18th birthday or go to university.

While her friends leapt the milestones to adulthood, the Deloraine teenager was trapped in a dark room wearing sunglasses and earplugs, her senses so frayed she couldn't even handle deodorant in the house.

Ms Eastley, now 20, has myalgic encephalomyelitis, otherwise known as chronic fatigue syndrome.
Initially dismissed as a "yuppie flu", ME is now recognised as a serious and debilitating illness which can cause profound fatigue, muscle and joint pain, headaches, disrupted sleep and immune system problems.

The cause is unknown.

Ms Eastley said the illness first presented during a basketball game when she was 16, and the "attack" left her unable to breathe or move her limbs.

She said doctors initially dismissed it as asthma, but in the months that followed attacks became more frequent and severe.

"I had to give up netball and I had to give up basketball, but then the attacks started happening in class, and my arms would lock up and I couldn't breathe, no matter how hard I tried," Ms Eastley said.

"I would have to miss a few days of school afterwards, in bed, feeling really sore and lethargic with headaches and nausea."

Ms Eastley said she tried various doctors as the disease progressed, but they all said nothing could be done.

"At first they didn't believe me, there were lots of different reasons why I was sick - I was missing my sister, who had just moved out of home, or it was just in my head, I was just being a stubborn teenager, or I didn't like school," Ms Eastley said.

"After six months I had a diagnosis, but they still told me there was nothing they could do. It broke my heart every time."

Read more...
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Such breathing "attacks" are a feature of my illness. Last year I called an ambulance, my first trip in one. The paramedic tried to convince me I was just anxious. The doctor saw me and tried to convince me I was just anxious. I had a very severe throat, and this was triggering the attacks for me. He said, take a deep breath ... and suddenly I could not breath at all for about twenty seconds. I had an instant convert then, but he still didn't know what it was or how to treat it, so sent me home.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Sad story. The title is so annoying -- 'One woman's battle with chronic fatigue'. It should be 'One woman's battle with myalgic encephalomyelitis'. First irritation of the day. :rolleyes:


or CFS, because CF is another "disease" right?!

GG
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Such breathing "attacks" are a feature of my illness. Last year I called an ambulance, my first trip in one. The paramedic tried to convince me I was just anxious. The doctor saw me and tried to convince me I was just anxious. I had a very severe throat, and this was triggering the attacks for me. He said, take a deep breath ... and suddenly I could not breath at all for about twenty seconds. I had an instant convert then, but he still didn't know what it was or how to treat it, so sent me home.

I haven't had exactly that problem, but when I had severe hyponatraemia it affected my breathing through an effect on the breathing muscles, along with all my other muscles both internal and external. When my GP failed to come out (or even tell me whether he was going to or not, and I phoned him two or three times) I phoned the emergency service in desperation. They came, they phoned my GP, and obviously he told them that it was a panic attack - something I have no history of. They ignored my repeated assertions (also made to the GP) that the illness was physical, and tried to get me to slow my breathing by breathing into a supermarket carrier bag they had, which turned out to have a hole in it! After an hour of wasted time and energy (and NHS money) they left me alone, barely able to move from my chair, speak or lift the phone. Their report stated that my breathing had improved, but the figures showed that it was in fact unchanged. They also invented two blood pressure readings. Their bp monitor battery had been flat so that they had not been able to take a reading.

It wasn't until I had another attack 3 years later, this time bypassing the GP and phoning an ambulance straight away, that it was found to be severe, potentially life-threatening hyponatraemia. In the interim period I had suffered a fracture and substantial dental damage as I had clearly been losing other electrolytes as well as sodium.

All this could have been avoided if medics had just LISTENED.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Or an abbreviated term for CFS. Or a symptom. Etc. Would be nice - wouldn't cost them much - to be consistent and use 'correct' terminology. Wouldn't catch them calling Parkinson's, Parkies :)

Trouble is, journalists know even less about medical science than doctors do. They also have this weird thing of preferring to put things in their own words rather than use the language supplied to them, with the common result that what they print is wrong. For example, after I graduated, the university press release stated that I was housebound. I had said (accurately) that I needed to work from home. A local paper, to whom I had supplied the info that I had just failed to get the First Class honours degree that I had been on track for, stated instead that I had failed to get a 'First degree' and talked about doing 'retakes', which was certainly not on my agenda. This was potentially damaging for my attempts to get back into work after years of hard study.

On another occasion a paper reported that the organisation I was involved with had organised an event that they were reporting. My press release had not stated this, as it was untrue. The untruth resulted in a furious phone call to my workplace from the organisation that DID organise the event!
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
MeSci I don't actually have a big issue with their use of the abbreviated term. Not when the full term is used elsewhere; but I think in a title it should be explicit. Of more concern to me would be incorrect terminology in science publications and in medical ones. I think they are obligated to be precise. However, some places are researching the symptom of course. Can't help but include the King's College lot in this. Perhaps it demonstrates perception? Check out the picture they use of a 'typical patient' :)
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
MeSci I don't actually have a big issue with their use of the abbreviated term. Not when the full term is used elsewhere; but I think in a title it should be explicit. Of more concern to me would be incorrect terminology in science publications and in medical ones. I think they are obligated to be precise. However, some places are researching the symptom of course. Can't help but include the King's College lot in this. Perhaps it demonstrates perception? Check out the picture they use of a 'typical patient' :)

Can't help thinking that she must be exhausted after putting on all that makeup...