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The Road to Recovery with Chronic Fatigue Syndrome

Susan

 

Published in the Geelong Advertiser GT magazine on Saturday 8th May 2015

 

The Road to Recovery with Chronic Fatigue Syndrome

 

 I am a formerly busy, formerly fit and formerly multi-tasking girl who has been dealing with Chronic Fatigue Syndrome (CFS) for 21 months. I used to work full time, study part time, play lacrosse and do boot camp. I took my health for granted because I was young; young people don’t get sick. Well, actually, it turns out that they do. I now excel at napping, binge-watching TV series and overanalysing my recovery.

 

When I first got sick I spent three months in bed in a world of pain and fatigue and nausea. I had such severe headaches that I was terrifyingly convinced I had a brain tumour, my whole body ached despite my complete inactivity, I lost 10kg as I could barely eat and showering became the most exhausting thing I had ever done.

 

The 12th May is CFS Awareness Day and while most people will have heard of someone suffering from CFS, very few people understand it and recovery from it is still rather a mystery. From elite athletes to parents to teenagers to young professionals, CFS is a condition that comes along and knocks you over and changes your life. It is so much more than tiredness, it’s a condition that brings on exhaustion, muscle pain, anxiety, headaches, dizziness, digestion problems and my biggest issue: cognitive dysfunction (that’s brain fog in CFS speak). Brain fog is the feeling that your brain is made of cotton wool, when even forming a simple sentence becomes a monumental task.

 

At its worst CFS is jet lag plus a New Year’s Day hangover with a side serve of the flu; it’s brutal and scary, because unlike those three things you don’t know when it will end. At its best it’s a few hours of feeling completely normal then overdoing it and crashing back to ground and paying for those precious hours for several days – I actually felt well enough to go surfing a few months ago, had a brilliant time, then spent two days in bed paying for those waves.

 

To go from being a fit and busy young woman who could do whatever she wanted to a bed-bound mess, completely dependent on my parents was rather an adjustment. But with help from the CFS Health Centre in Melbourne I am on the road to recovery and am stepping slowly back in to life. Not my old life, I don’t actually want that one back, but a new life with health and happiness at its core. I have completely stopped the glorification of busy in my life and my priorities have changed; busy be damned, being healthy is far more important.

 

And the thing is, when I’m not pushing myself and I’m doing things properly I actually feel kind of almost ok and I forget about the progress I’m making. Sometimes it’s the little things that mean I’m getting there.

 

It’s when I read a book in a café and suddenly realise that I’ve been reading for an hour and my coffee is cold that I need to stop and appreciate that that’s a big deal and that I’m recovering. I just read for an hour and I’m not curled up in a ball sucking my thumb whining for painkillers for my aching head. Take that brain fog!

 

When I notice that my shirt is tighter across my tummy than it has been for a while, rather than berate myself for this extra weight that has taken up residence on my middle I should think, hey, I actually have an appetite again! My face is no longer gaunt! Woo hoo! That’s a good thing.

 

It’s when I stop to think about when was the last time that I physically couldn’t keep standing up because of crushing fatigue that I realise I’m recovering; I haven’t scanned a room and found its lack of chairs frightening in a very long time and I haven’t had to nap in a clothing store’s change room in months. I am getting better.

 

When I wake up in a cold sweat mid-way through the night I can go, hmm, this hasn’t happened in a while, I’ve clearly been taking pretty good care of myself lately, good job. Then I will get up and change my pyjamas because that’s gross and I’d definitely prefer it didn’t happen.

 

Basically, what it comes down to is that I am now actually having symptom flare ups of CFS, not battling with its awfulness every day. When I do too much, or I am fighting off a bug, or sometimes for an unknown reason I have a flare up, but it goes. CFS then becomes about pacing myself and not doing too much and morning and evening rests and measured amounts of effort through the day; not a horrible painful brainfoggy sweaty awful day in a miasma of despair. That is recovery, I’m getting there, there are just bumps in this poorly maintained road to recovery.

 

By Suze Mackenzie

 

She blogs about CFS at www.asnoozielife.com

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