Monday, 5 June 2017

I'm still here

This is a short post to document that I'm still here. Still alive, still breathing. Just not quite winning yet. Here's a graph of my number of steps per day in 2017.

This is numerical proof from my wrist-band pedometer that my fatigue and other symptoms got worse around the end of April, for no clear reason that I've deduced. So I've been stuck horizontal a lot more, and the only exercise I've been achieving is imaginary qi gong (imaginary yoga is still a bit hard, and I can't even imagine having the energy to do imaginary star-jumps). I also haven't had the mental power and clarity to convert my thoughts, feelings and scrawled notes into something I feel okay about publishing on the internet. To be honest, one of the main reasons I write this blog is because I am very socially isolated by this disease, and I want to call out to the world that "I am still here!". Any 'raising of awareness' about CFS that I can achieve is really a side-benefit. But I also don't want this blog to be just more boring ramblings of a sick, desperate, lonely person. There's enough of that online already.

Even though I haven't really written or drawn anything I deem worth publishing, I still have a lot to say. Ideas swirl around in my head. Themes around the topic of being physically, mentally and socially straight-jacketed, by a completely unexpected and disabling illness in my early 30s. One that, despite my best efforts at pacing, doesn't appear to be going anywhere soon.

Hopefully one day soon I'll be able to write something again. It's on my to do list every day, along with 'get out of bed', 'have lunch', 'wash up' and 'rest rest rest rest rest'. I have more than a dozen story ideas.

In the meantime, here are two cartoons that demonstrates the rapid variability of this illness. How people with ME/CFS can occasionally look and act okay, and then can completely and rapidly wilt into an puddle of swollen, aching glands and brain fog on the floor, usually when the person we are talking to has left, and we no longer feel the need to hold ourselves together.

(Source unknown, sorry)

I don't know how to copy and paste those little moving gif pictures, but here is a link the second one (just scroll down the page a bit).

And, here is my interpretation of the above experience, which comes from the fact that one of the most frustrating things about having such craphouse batteries, is not that I can't do my favourite happy-making things, like go bodysurfing, climb mountains or hang out with friends, its that I can't clean. Its sooooo frustrating. And imaginary cleaning just doesn't quite cut the mustard.

If only I could visit my past self, standing at the sink, grumpily banging around pots and pans, and say "Young Jen, you can stand up long enough to do the dishes. You have so much to be grateful for!"

Oh well. 

Next time Gadget, next time. 

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