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Monday, May 21, 2018

International Awareness for ME / CFS & Fibromyalgia



This month, I decided to illustrate an animated gif for May 12th International Awareness Day.

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A little history...

"May 12th was chosen as it is the birthday of Florence Nightingale. She was believed to have suffered from Myalgic Encephalomyelitis (ME), otherwise known as Chronic Fatigue Syndrome (CFS) or ME/CFS." ~ quoted from www.may12.org

Why it's personal...

Myalgic Encephalomyelitis (ME/CFS) and her ugly sister Fibromyalgia (FM) have impacted my life over the last 5 years in a profound way. The last day I remember feeling 'normal' was August 11, 2013.

That was the day I manned a face painting stall and painted hundreds of little faces at my children's school fete. That day was so frantic, I didn't have time for a short lunch break, or even a toilet break.

Unbeknown to me, I was also coming down with the flu that day. The flu that never really left.

During my mission to find out why my body was broken, I had visited multiple specialists and was diagnosed and treated for multiple autoimmune diseases. However, the one most debilitating symptom remained, Post-Exertional Malaise (PEM), and finally the diagnosis of ME/CFS was added, and was shortly followed by the diagnosis of Fibromyalgia.

PEM is that bone crushing fatigue that turns your blood to led and makes your glands swell up and your head pound and spin, and your muscles burn (like you've just sprinted up 6 flights of stairs), but all you've done is wash your hair!

ME/CFS and that dreaded PEM, have robbed my ability to function as a 'whole' person since August 12, 2013. And it has peeled away a little more of me every year since. This year, I've had to put my dream career of illustrating children's books on pause.

I'm usually a very private person and only share my artwork to the world. It's taken me some time to work up the courage to draw myself struggling along with an invisible illness and to share my personal story.



I created this illustration to give others an idea of what it feels like to me, to have ME/CFS.

On better days, I only have the wet cement to wade through, on worse days, I have that stubborn elephant to contend with. Sometimes, that bothersome elephant likes to sit right on top of me. Fortunately, I don't have too many days in a row like that, where I'm completely bedridden.

I consider myself lucky to be in the moderate spectrum of this neurological disease (meaning, I currently function anywhere between 30% - 60% of my former-self).

Why am I lucky? During this journey, I've discovered there's a darker, more severe end of the spectrum. And to be honest, it terrifies me.

The patients in the severe spectrum have given me the strength to speak out, because they can't. They lost that ability long ago. They've lost the ability to walk, talk, feed themselves. They've been 'fully' missing from life for years. Some, missing for decades. Hidden away, in a quiet, darkened room: no light, no conversation, no music, no books, no movies, no social media to distract themselves from their suffering. Any stimuli causes them more pain and will exasperate all symptoms.

Life is hell for those at the severe end, and for their families. They watch on helplessly, as their loved one's life is stripped away, leaving just a shell of what was once a happy, healthy, and energetic person with a promising future.

There's currently no approved medical treatment for ME/CFS. Researches are coming close, but they need funding and they need the support from our government and our medical system.

Despite clinical studies revealing that people with ME/CFS are 'measurably more disabled' than people with Multiple Sclerosis (MS), ME/CFS receives a great deal less funding and disability support from the Australian government.

Even though ME/CFS is estimated to occur at a higher prevalence than MS (0.42% verses .09%), ME/CFS receives less attention in medical training.

"The name Chronic Fatigue Syndrome was given to this condition because people didn't understand what it was," said Professor Don Staines, co-director of Griffith University's National Centre for Neuroimmunology and Emerging Diseases (NCNED). Professor Don Staines and his team have found it's a malfunction in the body at a cellular level.

Professor Staines said, "There's a defect in the receptor meaning they no longer function the way they should. What the receptors should do is to be able to transfer calcium from outside the cell to the inside.

The discovery of abnormal calcium immune system affects people with ME/CFS in three main areas of the body where ME/CFS-related pain usually occurs – the brain and spinal cord, the pancreas and the stomach.

Calcium Ions are absolutely critical for cellular function, in every single cell and every single tissue, in the body."  ~ quoted from the Huffington Post and Today Tonight Adelaide's Story.

"Although it's known as Chronic Fatigue Syndrome," Professor Don Staines said, "fatigue is an unfortunate word because it trivialises the severity of the condition. The formal name of the illness, Myalgic Encephalomyelitis, is far more accurate because, in medical terms, it relates specifically to brain and spinal cord inflammation with associated muscle pain."

ME/CFS is a far cry from 'chronic fatigue' - so can we start calling it by its correct name?

Myalgic Encephalomyelitis (or ME)

It's a tricky word to get your mouth around. It's a bit like that word, supercalifragilisticexpialidocious, which takes a little practise to say it right.

So let me break it down for you:

MYA                     muscles

ALGIC                 painful

ENCEPHALO     brain

MYEL                  nerve

ITIS                      inflammation

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If you would like to know more about ME/CFS, please visit the following websites:

Watch the documentary 'Unrest' available on iTunes and Netflix. And 'After Unrest' a free Australian documentary.

Watch a short story of Dr Ron Davis' race to save his son Whitney from dying from this disease.

4 comments:

  1. Hi, Amanda - I noticed you and your gorgeous illustrations earlier today on Google+ and then realized just now you were the same person who left such a nice comment on my blog!

    I am SO sorry to hear that you also suffer from ME/CFS and fibro, too.

    Thank you for helping to spread the word with this very informative post. I LOVE your elephant/cement illustration!! That's just perfect, and I;m going to share it widely. Is it Ok for people to copy and share it?

    Nice to "meet" you and sorry to hear you are in the same boat. Thanks for helping to raise awareness!

    Sue

    Living with ME/CFS

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    Replies
    1. Thank you Sue, and yes you're welcome to share my illustration :)

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  2. Amanda GRAZIE anche dall'Italia, ogni testimonianza su CFS/ME รจ importante, con ogni tecnica, dobbiamo creare la consapevolezza di questa malattia, in Italia รจ quasi tutto da fare. Un forte abbraccio <3

    ReplyDelete