A Hat Tip to everyone facing a health challenge. Sometimes it slows us down and forces us to take a slightly different direction, but the journey continues.
I learned a couple of things this week which blew my plans for the latest post out of the water.
First I came across a hashtag for Ankylosing Spondylitis, which indicated there was a whole Month dedicated to the condition which has played a huge part in the establishment of my blog.
Further investigation suggests that Ankylosing Spondydoodah Month was in April LAST year, so I am fashionably late once again.
The other thing I learned was that AS continues to lay waste to the best laid plans.
I had intended to write a follow-up to the Keys to the Lodge, a post I wrote back in January as an attempt to assess Gillard’s political prospects for the year ahead.
Instead, I found myself lying in a darkened room hoping against all hope that the pain in my left eye wasn’t the start of an Iritis flare-up, right on the Easter long weekend.
So far, so good Gentle Reader, but now that I’m back at my keyboard my thoughts are turning not to the Canberra Punch and Judy Show but the impact of AS on my writing.
This time last year, when it really was Anky Spondoodle Month, I was in dreadful shape.
I first experienced symptoms at 17 and, while it’s unpleasant, I’m lucky that AS had never given me any great dramas through my life. Except for people really close to me, I’ve always managed to keep it pretty much to myself.
I landed a dream job a couple of years ago, filled with creativity, excitement and unpredictable working hours. My daughters had hit adulthood and for the first time in my career I could really go for it.
The AS had other ideas.
What I didn’t understand – ironically because I was always locked into a steady routine for the sake of the kids – is that, as an immune disorder, it doesn’t take much for my system to think it’s fighting off an illness.
When that happens, I get inflammation, usually in my neck and hips but it can affect any joint and in recent years it’s also affected my eyes. Iritis is an inflammation of the iris associated with AS.
The best defence is to avoid stress, eat well, exercise and stick to a good, steady routine. As much of dull, colourless and boring as you can stand and still consider yourself a functioning human being.
Which was the exact opposite of my dream job.
As time went on, the spaces between the flare-ups grew shorter and instead of getting Iritis roughly every two years, it was turning up every few months.
My rheumatologist put me on a very low dose of chemotherapy to try and dampen down the symptoms, which it did, but the tiredness remained as bad as ever.
I was at my wits end. I can’t describe the level of pain and exhaustion I was living with, along with the panic of knowing that I simply wasn’t functioning enough to trust that I was making good decisions.
Exactly 12 months ago, during Anky Spondo Month as it turns out, I did the only sensible thing and walked away.
A year later and the change in my well-being has been remarkable.
I’m off the chemo and taking only anti-inflammatories and the occasional painkiller. My energy level is back to normal and my work-life balance is everything I could wish for.
I started the blog in January as a bit of a replacement for that cool job which I loved so much and it’s given me nothing but enjoyment.
The role of casual observer and occasional remarker has not given a moment’s stress or anxiety.
I can’t explain this latest wobble. Sometimes the cause of a flare-up is obvious. Sometimes it isn’t. Accepting that is one of the biggest challenges of living with this disease.
So a Hat Tip to everyone facing their own health challenges. Sometimes they slow us down and force us to take a slightly different direction, but the journey continues.
I’ll get back to Gillard, just not this week.
I’ll also continue to wander the intricate laneways of the Twitterverse and report back on what I find. And there’ll be more dipping into the family history with tales of the Big Baxter and the Hong Kong Beat.
If you came for the Ankylosing Spondilitis, welcome, and I hope it’s been of interest. I do hope you’ll stick around for the ride. No idea where we’re headed, but with a little wit and good humour we might have some fun along the way.