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Chronic Fatigue Awareness Day May 12 2013

Now, before you go out to buy mummy that pair of slippers or that fluffy robe for Mother’s Day (12th May 2013 in Australia), take a moment to think of all the peeps out there living in slippers and that fluffy robe practically day in and day out because they literally have no energy to move, eat or speak. This is how bad Chronic Fatigue Syndrome can be.

Chronic Fatigue Syndrome is a debilitating condition and has many symptoms including:

– Persistent fatigue
– Widespread muscle and joint pain
– Sensitivity to light
– Headaches
– Cognitive difficulties
– Serve mental and physical exhaustion

and the list continues…..

A very close family member has recently been diagnosed with CFS, after a mentally/physically draining experience with multiple doctors, they are taking one day at a time- both good days and bad. I also knew that I had a reader, Nat (what a fabulous name), who was a CFS sufferer and recently noticed an awareness day. So what better way to raise awareness than learn straight from Nat about her experience. I’m grateful she was very willing to share her story with all of you on my blog.

All I ask on CFS Awareness Day is for you to share this post with your friends and family to increase awareness and shed light on this hard to deal with, painful and exhausting condition.

Natalie shares:

Why I never lack motivation

My name’s Natalie and I’m a 26 year old supply chain manager, food, fashion and life lover from Melbourne.  The Natalie that owns this excellent fitness business and runs this blog has asked me to write about a cause that has recently been bought to her attention and happens to share it’s awareness day with Mother’s Day (May 12); Myalgic Encephalomyelitis.

My-a-what?  I hear you say.  Maybe you would know it better as Chronic Fatigue Syndrome.

When I was 18 I was at uni studying multimedia and e-commerce and extremely happy with life.  I was insanely in love with my boyfriend and was taking off to the beach at every opportunity, all while getting straight high distinctions at school.  Life was good.

In August, 2005, when I had just started second semester, I started to feel very dizzy in a commerce class.  This was very quickly followed by sweating, shaking and extreme nausea.  I immediately left and although terrified to drive, took off home.  I was shaking and couldn’t concentrate, I just knew I needed to get home.  I knew inside me that something was very wrong.

For the next 12 months I couldn’t study and I could barely go out.  If I did go out, I became exhausted within 10 minutes, so most of my trips revolved around doctor’s visits.  Most of these Doctor’s visits ended in medical professionals, supposedly there to help me, laughing in my face or telling me I was mentally ill.  I remember one saying to Mum, ‘There’s nothing wrong with your daughter’, and laughing in my mother’s face.  Being so physically ill and no one believing me was the worst thing on earth.  I wasn’t depressed, but if I was, who could blame me being in that situation?

Thankfully in early 2007 I finally met a supportive Doctor who specialises in Chronic Fatigue Syndrome.  By this point I had declined to only being able to leave the house for Doctor’s appointments and then taking 3-7 days to recover.  It was hell.
But it got worse.  Following meeting the specialist and a spate of unsuccessful treatments, I became totally house bound and 99% bed bound – I could only get out of bed to use the bathroom and shower in a chair (most days).  It took me 10 minutes to walk the 10 metres to the bathroom, and I had to take a break half way.  I could not handle any stimuli – no sound through music, no TV or computer, no smells at all (not even my Mum’s amazing Italian cooking), my food had to be very plain (and very vegetable based so it was easy to digest).  Everything hurt all the time and I was always dizzy.  If I had to stand up for more than about 30 seconds, I’d fall over.  I was always cold, I dropped 30kgs and was seriously underweight, and at my worst, I could no longer decipher what people were saying and had to ask them to speak very simply (eg. instead of ‘Natalie would you like a drink’, it had to be as simple as ‘drink?’ or a hand gesture).  There were days I couldn’t pick up a fork (not even a plastic one), to feed myself.
Thankfully, for me, in 2008 I started an experimental treatment that did eventually work. After a year or so (of living in pitch black for the treatment), I was able to venture out to the supermarket. It was the most amazing experience of my life.  By 2010, I was able to return to full time wok.  It was hard at first, but 3 years later I am still sitting on the 9-5 wagon and am completely recovered and off all medication.
CFS/ME is a thing of the past for me, but it is estimated over a million people are still suffering in the US alone.  It is more common in Australian than Rheumatoid Arthritis, Multiple Sclerosis or HIV, but I bet you know more about those than CFS/ME.  Although rare, people do die from CFS/ME (Google my friend, Lynn Gilderdale – an amazingly strong woman), and thousands of people (25% of all sufferers, in fact), are suffering as badly as I did at my worst – or even worse, and for years and year – 40 years is the longest I came across.  

It’s a tough cause to support because although you can give money, every researcher is researching in a different direction.   Some still put their research into mental illness as a cause.  Sufferers all have different symptoms and varying degrees of severity, and there is no single treatment that all sufferers will respond positively to.  All I can do to help CFS/ME from where I am sitting is to raise awareness and hope that this increases understanding.  At least 50% of the people I knew when I got sick thought I was depressed or a hypochondriac, and, as a sufferer, that is a hard thing to hear from those you care about.

So why did I title this story ‘Why I never lack motivation’?

When I was sick, I literally could not move because a lot of the time, I was paralysed.
All I wished for was to be able to walk down the street on the footpath or in the grass, touch a tree, hear birds, feel sun on my skin and breathe fresh air.
Every time I can’t be bothered going for a jog or heading outside for some yoga or whatever it may be, I think back to the time when I couldn’t and remember that, one day, hopefully when I am old and grey, there will be a time again when I can’t.  I also think of all the people around the world suffering from CFS/ME and other debilitating illnesses my age or younger who don’t have the choice.  It springs me off the couch every time.
CFS/ME Awareness day is May 12 and the colour for awareness is blue.
Please share my story, or tell somebody you read about it, or post about it on Facebook – whatever you can to spread the word.
Me and over a million other people could not thank you enough.

You made my day just by reading this,
Natalie Ziegenbein 

Feel free to share your experience with CFS below in the comments and don’t forget to share this post with your friends/family members. There are a few FB groups/pages that may help you: 
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