G’day I’m Bruce I work in the engineering sector and I’m also known as hottriggeredkiwi. A clue to my history is that I grew up on a dairy farm near a tiny town in rural Waikato.
I was diagnosed with sero-negative ankylosing spondilitis back in the late 80’s, and have since had further health issues with more arthritis with associated complications.
My day generally starts in the dark and finishes long into the night. I try to just enjoy life and get the most out of each day, spending time with my lovely wife and indulging my passion for photography - mostly of cloud formations, seascapes and landscapes.
As someone with arthritis, I find it a tough ask to deal with my ‘self’, especially as this self is in constant denial about medical conditions. This self needs to be the tough one in the family, to be able to know where to go, how to do stuff, on call and ready to go anywhere at any time. They need to fix stuff, be there to support the supporter, and pick up the pieces as required. I’m fine with all that. The need to keep going and get everything done is vital for sanity and there’s no-one else to draw on, except at work for work stuff.
The support role for a driven person with an introverted personality is equally tough.
It’s about being the anchor, being grounded enough to know where to draw the line, even for such a driven person as myself. Even when she knows I will go quietly out the back door and spend a few hours digging, doing ground prep in the garden, chopping firewood, or just helping the landlord in the orchard.
The anchor has to be yet firmer at times, especially when it’s raining or windy and this person has come back to our hut after being down the coast or down on or in the river. Then she’ll have to issue painkillers which are the price to pay for carrying kilos of camera gear for kilometres…because she loves me.
My wife goes with me to the doctor to explain what actually goes on in our hut because although this person can shut down in his head, the pain still exists, so she’s there to say where, when and how often this occurs.
The pharmacist’s hat comes out when she issues meds, as and when required. Even when this person says he doesn’t need them, she knows he does and he’s all the better for taking them.
My encouragement unit is there in the background, and even without saying anything, I know she is always on tap if required. Without being told, she knows when the bad days happen.
Work is rarely the issue. It’s those spring, summer, autumn days that are the worst, when the barometer goes up or down within hours, and the hygrometer elevates. This person instantly feels it, so then she dons her comfort cap.
For those days when inflammation takes a greater hold and time critical duties have to be done inside and outside the hut regardless of weather or level of suffering, she issues tea, tabs, telling off and tears as required. Beautifully timed hugs and attention are tendered and tended.
The motivational supporter comes out on days when a road-trip occurs, especially if the weather’s been rubbish for a while. Chores and duties remain on the shelf as the picnic stuff goes into the car and off we go, to places new or old, with camera gear and boots at the ready.
One thing with having her around, I’ve had to learn to communicate better (still a long way to go). Hat’s off to her who knows best, who has been with me through better and worse times, and does her best no matter what, even though she suffers as well. Between us, we muddle on and through; it’s just us two, and that’s fine.
It was so quiet and peaceful on the river this morning. The weather wasn’t brilliant, requiring the Swanndri for warmth and some protection from the impending rain. Even the hunter’s long pants got used as the riverbank grasses are now thigh deep; they dried quickly enough once I was back in our hut with a fire going.
One of the very rare people out this morning was a white-baiter who served as my model for the morning. He was totally unaware, and that’s perfectly fine. We all go out to find our pieces of quiet to put our minds back together again from whatever our week throws at us in an attempt to pull us apart. I left him totally at one with his world as I was with mine.
We rheumatoid arthritis warriors and Spoonies (those living with ankylosing spondylitis) talk about fatigue and how draining our challenges can be; and yes, as much as I bury my head in the sand, it’s a constant in my life too. But that’s it.
Personally, I try to rise way above that and carry on with as normal a day as I can. I found years ago that it’s easy to do so and every hour, day, week month that I extend myself, the easier it’s been to keep that extension going. When really young, I developed an ability to shut down pain and have since used the same technique to not only ignore fatigue but use it as a motivator.
In my employment, I usually work the longest hours with the least amount of breaks. I still feel pain and get fatigued but that’s in the background; before and after work I manage (sometimes force myself) to hunt down a few images, light permitting. At weekends, I’m up at the same time as during the week. The days are even longer to get what I need done for myself, my wife, and the property we live on.
That’s it for now. I look out the north window – the black chooks await attention. Out to the west, I can see the Kaimai Ranges under some of my favourite clouds – black and textured with impending rain. A quail is sitting on the corner post, so I know the others are feasting down by the ramp.
Oh bother, it’s time; and, look, outside it’s dark and raining again. No, it’s hail too, wow, it must be cold, time for the Swanndri.
Bah, it’s a struggle, what is it now? Oh of course, yesterday on the river with the whitebaiters in the rain, must’ve gotten wetter than I thought, and the fire didn’t dry it out, and the bush shirt still feels wet as well. Sometimes it’s hard being driven, as I struggle to pull on the Swanni on top of the thick bush shirt. No feeling in the fingertips again. Bugger, oh well, it’ll warm up as soon as I get it on and I get going. Ah, that’s better and far too cosy now.
Sooo grateful I don’t have the morning stiffness of the bones that a lot of AS (ankylosing spondylitis) warriors struggle with, and thankful for the toasty warm cup o’ tea.
Fingers still struggle with the tripod, extending those lower sections. I’m sure they get tougher each time. Nah, just cold is all – head in sand again.
In praise of medications
I love my meds – all of them. If it wasn’t for them I couldn’t get here, and wouldn’t be here where I am now. They keep me at work, and working for up to 12 hours a shift; usually, though, my work hovers nicely around a 50-hour week. It’s the meds that, right now, let me wade through the riverbank high grasses, slither ungracefully over the edge and negotiate the balancing act over the rocks and onto and into the riverbed mud.
Even with my meds, my tripod now doubles as a support structure, both to help me get into shooting position and then for the camera. This weekend photographer is not quite as supple as he once was, and the mountaineer, tramper, hunter, gymnast and rock/ice climber are now but a distant memory of previous lifetimes.
My favourite meds enable me to unwind and recover from the frenetic pace of the working week, at least partially. I’m generally fatigued come Friday. The weekend’s activities rest and reset the mind to a level that enables me to connect with people for another week, and all this while maintaining a pace of activity that isn’t really sustainable.
With an already weakened immune system, and as someone who has never had a high iron count, I do become exhausted, with a bout of pneumonia every year or so. At such times I raise the levels of certain meds (most times with the quacks’ pre-approval and certainly afterwards) and I’m back at work within the week. I know I will recover over the next few months by keeping my hours down to less than 10 a day and hence working a slightly shorter week.