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Adventures of a Girl Reporter, Ankylosing Spondylitis, Australia, Observations

The highs and lows of living with an immune disorder

It was inevitable that a big life change like buying a house would spark a flare-up of an immune disorder which reacts to stress. Anything which deviates from the flat line of normality is a risk. My particular flavour is called Ankylosing Spondylitis but I’m writing this post for anyone who ever feels the effects of stress.

My reaction to stress might be extreme but it is something which affects all of us in its own unique way and yet it is widely misunderstood. I am less surprised these days by the things I find ‘stressful’ but it has taken a long time and many visits to the emergency clinic to appreciate the way little things can build upon each other to ratchet up the pressure.

Relax! It's fun - taking pictures like this is one of my favourite chill things. What's yours?

Relax! It’s fun – taking pictures like this is one of my favourite chill things. What’s yours?

The role of stress in my condition wasn’t made clear to me until I was more than 20 years in to living with it when I saw a specialist in Brisbane shortly before he retired.

He had treated my uncle Fred for the same condition in the past and so the first part of the consultation was spent reminiscing. He didn’t know Fred had died some years before from prostate cancer. But he was unsurprised to hear how hard he’d fought that illness, right to its bitter end.

He was a fighter, old Fred, much braver than me. Ankylosing spondylitis is a painful condition which primarily affects the spine, in extreme cases fusing the vertebrae into a fixed, immobile position.

Fred had it far worse than your Girl Reporter. He told me near the end that he had been in continuous pain until finally his spine fused completely. At least it didn’t hurt anymore.

Then he broke his neck and was delighted to be able to move his head freely for the first time in years. He was laughing as he told me that the horrified medical team, far from sharing his joy, put a stop to that before he could do any more damage to himself.

Fred’s experience was extreme and nothing like mine, which goes to show that everyone’s immune disorder plays out differently, whether it’s AS or anything else. I wish I could deal with mine with the same good grace as my uncle Fred but this isn’t a whinge fest, this is about the things which are the same.

When we got down to business the rheumatologist asked me what had been going on in my life recently. It was an odd question which no doctor had asked before. And yet, he said, he had never known a case of inflammation which didn’t have stress as its trigger.

In other words, a compromised immune system will react to any change – perhaps an elevated heart rate or a surge of adrenalin – as if the body is under serious attack.

In my case that means pain in any or all of my joints, cold-like symptoms and extreme tiredness. Sometimes, but not this time, it affects my eyes with painful inflammation of the iris called Iritis or Uveitis which can lead to blindness – a symptom my uncle Fred never experienced.

The thing about stress which is hardest to get to grips with is the fact that it is neither negative nor positive. As Hans Selye, who coined the term in 1936, put it: it’s “the non-specific response of the body to any demand for change.”

Sounds simple enough, but we are accustomed to thinking of stress as purely negative. In the months of house-hunting, house-choosing, house-buying, house-moving I heard over and over, “Don’t worry.”

But I wasn’t worried. I was excited, I was happy. This was a great thing. And, sensing change in the wind, my immune system wheeled out the big guns and went on the attack.

The best I can hope for before, during and after a flare-up is to try and keep myself on an even keel both physically and emotionally. Change is inevitable for all of us so even if you don’t have the pleasure of something like AS you will have a non-specific reaction to change which may not be immediately obvious or understood.

Stress is acknowledged as a major factor in a range of physical and mental disorders and there are numerous recognised strategies for minimising its effects. The purpose of my article is not to expound the benefits of meditation or gardening but to highlight the elusive nature of stress itself.

The highs of life can be just as challenging as the lows, as my recent experience demonstrates.

The great excitement of moving into our dream home and finally putting down some roots after years of wandering has laid me low for weeks now. The pain has been manageable for most of it but the lethargy lingers on.

There’s a link at the end to a long but rather good explanation of the debilitating effects of chronic pain and fatigue using a simple spoon analogy.

Put briefly, every day begins with a calculation, the must-do against the want-to, with most things adding up to the can’t-manage.

This will pass and when it does, experience tells me, it will pass pretty instantly.

I know the fog is clearing because I’m writing this, after weeks of simply not having the energy for anything other than the essentials.

The fog will lift and all of a sudden I will be skipping down the street and jumping on to a train flushed with the excitement of a brief run down the station platform. It will be euphoric.

And that euphoria will be a new danger. Coming out of a stressful situation can be a whole new stressor. Even as I long for the fog to clear I must remember not to dance too long upon the sunlit slope when I finally reach it.

And that’s where meditation, bush walking or healthy eating and regular bedtimes show their worth. A strong base line, however you choose to maintain it, is the best way I’ve found to keep the sine wave of simply living within manageable bounds.

It’s not the most exciting strategy, nor does it offer any guarantees against another flare-up. But it does provide a degree of protection against the worst effects. And if it can do that for me, out here on the perimeter, then a little stress-resilience must be worth building whatever your non-specific reaction to it may be.

I’m taking a winter break. I’ll be back in July with more Adventures of a Girl Reporter, more delving into the Big Baxter story, more observations both light-hearted and serious. Til then, relax! It’ll be fun.

Further reading:

What is stress? – The American Institute of Stress

Explainer: What is the immune system? – The Conversation

The Spoon Theory – Christine Miserandino

Want more Baxter? Your Girl Reporter writes the occasional culture piece too. I know, versatile right? Check it out here  

© Sally Baxter 2015

This post was also published at the Australian Independent Media Network

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About Sally Baxter

Once I was a girl reporter. Now I'm an interested observer covering the past, present and future of journalism and whatever else takes my fancy. All views my own.

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  1. Pingback: Sorting through the wreckage – a year in review | Sally Baxter - December 20, 2015

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