CFS Awareness Day

batteryIt’s CFS Awareness Day today people! I’m wearing blue (the CFS colour) and heading to the CFS Health Centre this evening to gather with other chronically fatigued warriors and find some solidarity. It won’t be a late night, we’re bringing blankets and pillows and it will be delightfully low-key. I’ll also be surrounded by people who 100 percent understand my illness. Yes! This is an international awareness day and it’s inspiring to think of the people around the world raising awareness and each CFS warrior being a little bit more understood.

Any of my regular readers will be aware that when I mention CFS it stands for Chronic Fatigue Syndrome. They might not be aware of the alternate interpretations of this acronym… My personal favourite is “Crappy Fatigue Syndrome”, usually used in grumpy moments or as the email subject to a fellow CFS warrior.

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In preparation for CFS Awareness Day I wrote this article the Geelong Advertiser’s weekend magazine (my local paper).

If you exclude chronic fatigue syndrome in your google search for CFS you find a bizarre range of results: Combat Flight Simulator, Container Freight System, Chelsea Flower Show, Country Fire Service, Can’t Find Shit, Canadian Forest Service, Central Florida Symphony all the way to Common Fucking Sense and Chicken Fried Steak (America, what is that?).

The CFS Health Centre have another option, they believe that CFS can stand up for Choice Future Success and a jumper with this printed on it is winging its way to me in the mail to remind me that CFS doesn’t have to always stand for suffering from chronic fatigue syndrome.

hoodiesI’ve been feeling a bit miserable the last few days so I’m choosing Choice Future Success as my definition. I normally do a bang up job of keeping positive and celebrating my successes, however small they are, but there’s no denying that this is a very hard condition to live with. I’m all about progress in my recovery; I don’t expect to wake up fully recovered or find a magic pill, but I envisage a gradual recovery to health and happiness and maybe, you know, gainful employment and perhaps living away from my parents again (as fond as I am of them, and as awesome a place as the farm is, I’d appreciate some independence again).

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my lovely home

So, I was going along doing my exercises, pacing myself, writing this blog (when the brain fog cleared) and keeping a good mindset. Then I crashed. Big Time. Why? Well, I basically pretended I wasn’t a sickie and spent a week socialising, driving long distances, going to several appointments, cooking up a storm and finishing up the week by attending my 10-year school reunion. It was still significantly less than most people’s weeks but for me it was too much. I forgot to do my morning and afternoon rest, didn’t meditate, didn’t do my stretches and yoga, I pushed through the fatigue barrier too many times and operated on adrenaline… not good. I thought I was ok as I hadn’t crashed yet… Hmm not so much, my body was just waiting for when I gave it permission to pull the plug and relocate to bed. I then spent two weeks trying to recover from that crash, trying to resume my old baseline routine and not realising I needed to go back to the start and let my body rest and recover. I rallied myself for my birthday (28 now, woo hoo) and had a special day with friends and made myself an elaborate birthday cake but I then missed about five social engagements, got scared to drive anywhere, cried a bit, cried some more, felt my anxiety wreak havoc in my mind, hid my aching head under a pillow, had dizzy spells from low blood pressure and wondered what the hell was going on.

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my over-the-top birthday cake… I had so much fun making this 🙂

The thing is, it was the first time in a long time that this control freak just did what she wanted. I wanted to do all those things, so I did. And my body didn’t seem to stop me… Well, I think it tried, I just chose not to listen. And the thing with progress is that you don’t always see it. A year ago the crash would have come about three days earlier; I wouldn’t have made it to the school reunion as I’d have been in bed. And the resulting recovery? Well I’m not quite back to where I was but it’s a hell of a lot quicker than the last few crashes.

I know all this is a process and I try and find that lustre in the silver lining but it’s a hard gig keeping my mind under control and staying positive when I’m dealing with all this. So, today, I’m choosing the Choice Future Success definition of CFS.

Choice: This illness has made me aware of my choices in life; it’s opened my eyes to the stress I was choosing to put on my body. So, in the future I choose to value my health, to lead a less stressful life, to value my friends who’ve stuck with me through this illness and appreciate all that I have.

Future: I no longer see my future in fast forward as I did pre-chronic fatigue. I was bolting from task to task and place to place doing what I thought I should be doing. I saw being busy busy in Melbourne, pushing myself, climbing the career ladder and ticking more boxes. My new future looks nothing like that: I see my future as being happy with my health; living by the ocean, or at least being outside more; spending time with the people I love, and being supportive of them as they have been of me. My future includes showering without needing a nap afterwards, spending time with my adorable niece Eva and not needing the next day to recover, no longer napping in petrol station road stops on short drives and being able to go for a run when I want to. I wouldn’t mind helping others recover from CFS too, but one thing at a time, my recovery first. I will keep the good things CFS taught me and leave behind my bad habits like obsessively multitasking and pushing myself and taking my health for granted.

No more of this in my future please!

No more of this in my future please!

Success: This has been completely redefined for me. To this former overachiever success is now being healthy again, living a life I enjoy, writing when I can and loving my friends and family. It’s sounds a bit trite but this ambitious career girl doesn’t care about my old definition of success. I might regress to my former self and need the stimulation and satisfaction from working and being busy like I used to, who knows, but right now my success is being able to write when I want to, read when I want to, socialize when I want to and not doubt myself when it comes to my health. That would be success. A career that fits around those principles is what I need to find. A stellar boyfriend wouldn’t go astray either 😉

So, Happy CFS Awareness Day today! Choice future success is what I’m seeing that as, and it can apply to anyone, not just the chronically fatigued. Here’s to choices, future and success on your own terms.

I choose to spend lots of successful bonding time with my niece Eva in the future.

I choose to spend lots of successful bonding time with my niece Eva in the future. She was clever enough to send me this pic 🙂

P.S. I also like it when CFS stands for “Come the Fuck on Susan” when I’m feeling flat and need a pep talk from myself.


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4 thoughts on “CFS Awareness Day

  1. Hi Susie. I am in bed with a sore throat I’ve had since end April (comes and goes). I stumbled upon your article in the Addy and Loved it! It helped me feel better instantly!! And listening to your body is something I am a very slow learner at. Cute photo of Eva. Bet she’s gorgeous! Hey I read a good book recently by Daniel Levitan. Called ” the Organised mind” which isn’t what it sounds. Have a look. Meanwhile keep getting well or “just be”
    Love Deb West xx

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    • Hi Deb, thanks so much for your comment! Hope you’re on the improve, glad I could entertain you with my article and blog while you rested. I’ll look in to that book, thanks so much Xx Suze

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