Side Selfies and Word Porn

The Internet is the gift that keeps on giving.  Lolcatz and Grumpy Cats, the home of Chuck Norris facts. Challenges involving cinnamon and ice buckets, dubious dance moves of the dabbing and flossing variety.

In addition to the memes and the challenges — and the dances banned from my house — the World Wide Web also provides us with a global community where we can share our experiences with chronic illness. It’s an isolating experience where our friends and family don’t quite understand (as much as they try), however international strangers can support you in a virtual intimacy that is hard to replicate in our everyday reality.

Our social media groups are not for the fainthearted.  Administrators pop into threads exclaiming ‘Gentle reminder, we aren’t medical professionals!’ while we all plough on comparing lumps and bumps, pulling back eyelids to show the latest uveitis flare, rashes and bruises around injection sites. Ankles spill over trainers and kneecaps are lost in swollen joints. TMI warnings reserved only for boobs, bums and nudie time dysfunction.

A common sight is the side on selfie, or the written post equivalent. This is when a Spoonie is at breaking point, comments are of the ‘gentle hugs’ variety, Snoopy is the current GIF du jour and we all lament together about our awful diseases. Suicide posts are common and members rally to find a poster’s location if our R U OK messages are unanswered.Continue reading “Side Selfies and Word Porn”

But you don’t kick hoops?

I know right? Don’t let the avatar fool you. I don’t play basketball either. Shooting some b-ball after school doesn’t mean much to me outside the theme song from Fresh Prince.

I developed the little adage ‘Kicking Hoops’ as a reference to my lack of sporting prowess that has plagued me since childhood. Somewhere in a box at the back of a shed is my year one school report which contains the actual sentence: ‘Mary Jane’s throwing and catching skills leave a lot to be desired.’ While I don’t subscribe to the notion of participation trophies for the athletically challenged like myself, I feel that as a 5 year old my teacher’s words are what Cher in Clueless would have dubbed as ‘way harsh’, convincing me from an early age that physical activity was not in my future.

So aside from dabbling in yoga and recently taking up lawn bowls, my first real team sports participation — swayed mostly by bowling club beer prices — I have largely avoided all things Sporty McSportface as a participant and a spectator. While this is mostly due to disinterest, it has remained in a state of dormancy due to a complete lack of competitiveness.

This was until I met the competition. My competition is my illness. Basketball players might have the large scoreboard with the digital timer but I’m dealing with a sands through the hourglass vibe in a race against time.

Over ten years ago I was diagnosed with Ankylosing Spondylitis (AS), an autoimmune form of arthritis which causes inflammation of the joints, affects mobility and causes levels of pain that would make a circus strongman cry. It is not only restricted to joints and can affect organs, in my case my eyes and lungs.

To make matters worse autoimmune diseases come in collections. If you have one you can almost guarantee there is another stalking it. My second and most recent addition is Fibromyalgia which in a nutshell is more pain with the added benefit of fatigue and brain fog.  Technically it’s not autoimmune but it does like to cosy up to arthritis and is prevalent in our community. #Twinning.

Along with some pretty nasty drugs that range from chemo to injecting immunosuppressants, a key focus of pain relief and disease progression is exercise. It was my Fibromyalgia diagnosis that inspired my ‘game on moll’ moment and now my previously sedentary arse has to start moving whether I like it or not.

Sporting activity has never come naturally to me but I refuse to let this illness “win”. Any gain I have to me is ‘kicking hoops’.

I will fall, I will fail but I will be winning.

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