Wednesday, 28 June 2017

I miss being tired!

Post card from sick-town

Dear friends, 

there is a feeling that I have now realised you should really appreciate, if you have it. And that is being tired!  

Yeah, but I've got chronic fatigue syndrome, so I'm tired all the time, right? 

Yeah, I am really tired all the time, but I'm sick tired, stressed tired, wobbling on the edge of the scary abyss tired. I'm sure we all know this feeling, from times of being sick or over-stressed. Its quite different to healthy tired. That good, sweet, delicious tired, like when you've gone for a massive swim in the ocean and you get out and into your warm dry clothes, wrap your hands around a steaming mug of tea, and drive home with the heater blasting in the car to a big hungry lunch and then an afternoon nap in the sunshine. 

Or you've been bushwalking for a week and you get home and watch all the muck run off your legs in the shower and have a little wimper because all the scratches sting and the bruises hurt, and you dump all your stinky wet gear in a pile outside to deal with tomorrow, and tuck into eating a meal of fresh vegetables and summer-fruit and ice cream, and sleep like a baby in your soft, warm bed, then wake up the next morning a bit sore and limpy, but also fit and refreshed to your core. 

Or when you've just organised a big event with heaps of people, spent all day running up and down a hall, serving food and washing dishes, dealing with minor emergencies, and you've just packed up the last bit of equipment with the last remaining volunteer, and you don't want to speak to anyone else or think at all any more, but it was heart-warming and satisfying, and you'd do it all again the next year. 

In retrospect, I probably used to spend most of my life chasing that lovely, sweet, exhausted tired feeling. That having-lived-life-to-its-fullest tired. 

But CFS makes you sick, fluey tired, with a side serve of bodily-anxiety. I'm not anxious in my mind, but my body if often very stressed, just from standing upright, or needing the find the mental-energy to follow a conversation when there are other noises going on. And despite the exhaustion, I often can't even sleep properly at night, just because a lot of the systems in my body are whacked, including the hormones that regulate sleep cycles. 

This is one of the main reasons many people with CFS really hate the term CFS. Too often the response from others is 'yeah, I get really tired too'. When we're not just chronically tired, we're chronically sick. A new, and I'd say much more appropriate name for this illness is Systemic Exertional Intolerance Disorder (SEID), which I will try to begin to use instead of CFS. 

In conclusion, a reminder that next time you feel healthy, good tired - please appreciate the delicious sweetness of that feeling xxx 

Having a rest on a clump of buttongrass, on the rather muddy track leading to the Western Arthurs, 2011. Yeah, I was tired. But I also got up again, walked another four hours through the mud and rain, drove three hours back home whilst sitting upright and talking to my companions at the same time, showered, ate and went to bed and slept like a log. With CFS I've had a good day if I can achieve the showering and eating bit! 

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