Rules for Fatigue Management…

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Hello world! My name is Suze, or as my little cousins call me, Snoozie. I’m 27, have flaming red hair (of the genetic variety), split my time between regional Victoria and Melbourne, love reading, writing, baking and photo taking. I am a touch too competitive and I also have post-viral fatigue.

A year ago, almost to the day, I went down like a sad soufflé. I was very busy, I won’t deny that, but I had been studiously ignoring the run-down-illness alarms that my body had been setting off. Whatever, I’m fine, a trip to hospital isn’t that big a deal, coffee wakes me up, exercise keeps me sane, I’m fine. Well, my body decided that enough was enough, I was going to stop whether I liked it or not and in snuck a mystery virus… And what a virus it was! I saw far too many doctors who had alarming ideas about what might be wrong with me (googling Lupus turned out to be truly terrifying), I got junkie-like arms from all the blood tests they ordered and in the end, they assured me nothing scary was wrong, it’s called post-viral fatigue, is quite common but not much you can do about it…

So, post-viral fatigue, what the hell is that? It’s a bizarre phenomenon that doctors really don’t know much about, but it’s not killing anyone so they don’t seem overly concerned about it; they figured out I didn’t have Cancer, HIV, Rickettsia, Addison’s or Lyme Disease so they were happy. I was told: “rest, graded exercise, off you go now, there are people in the waiting room”.

Before this happened I had never made the distinction between tiredness and fatigue, weren’t they just synonyms? Err, no, the overwhelming urge I feel to curl up in a ball and rest my head on whatever unsanitary surface is nearby isn’t feeling tired, I’m not yawning or feeling sleepy, I’m struggling to stand upright or even say out loud ‘it’s time I went home’. It reminds me of people who realise that depression feels nothing like sadness; fatigue feels nothing like being tired. So you’re basically suffering from narcolepsy, add in muscle pain, headaches, stomach upsets, the inability to concentrate and a messed up sleeping cycle and that’s post-viral fatigue.

For the first three months I lay on the couch at my parents’ farm, moving only to change a DVD or to be force-fed by my very caring mother. The exercise thing proved more problematic as merely having a shower sent me back to bed. And who knew blow-drying your hair could be oh-so exhausting? About six months in I began shuffling around the farm and feeling slightly human again and even made it through Christmas Day with just a nap between turkey and trifle.

I executed a DVD raid on eBay (much to my accountant father’s alarm), I listened to Stephen Fry read all the Harry Potter books on iTunes, I ditched the high-brow literature my uni had taught me to like and returned to page-turners with spies, detectives and thwarted romance. I began to bake again (fail-safe recipes like ANZAC biccies and caramel slice became staples in our house), joined Pinterest (and lost days of my life), got RSI in my thumb from too much Facebook on my phone and learnt to knit.

It’s an ongoing process and since I’m feeling the need to use my brain again (and not just to stare at a screen or measure out mounds of butter) I thought I’d start this blog… I’ll document my adventures be them DVD marathons, trips to the theatre, new books I’ve discovered, Instagram uploads, walks that I take and dinners that I make. Hopefully there will be a trend, with more energy and less snoozes, but no matter what I’ll be dressed before midday.

 

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6 thoughts on “Rules for Fatigue Management…

  1. Hi Susie, I’ve had PVF for a week and a half now – only a week – it is so positive and inspiring reading your blog. Keep writing! My sister had ME for two years, I had no concept of the exhaustion, brain fog, and complete inability to function that she used to describe until experiencing it myself. My life sounds similar to yours before I ‘went down’ – hectic job, trying to fit in friends, family and things I love doing between the working hours. The sad thing is, I’d already recognised that my brain and body had had enough and had handed my notice into my job – I finish at the end of next week but have been signed off with this PVF. What a great ending to an 8 year career! I was supposed to go to the top, but had decided to opt-out and find something to do that made my soul happy. Thank you so much for putting your experiences of how to manage this online. Writing from my bed on my laptop, trying to google what in the world gets my body and mind back up and running again, what super-foods to eat, what to avoid etc I came across your blog on Pinterest. Stay positive, you have helped me feel better today xx

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    • Thanks so much for your comment Gemma! All the best with your recovery, it is a bizarre thing fatigue, but at least you have your sister who understands. My friend who has had PVF has been invaluable to me!

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