Covid and Cancer get all the attention but there’s an epidemic of chronic disease niggling at the wellbeing of a generation, writes GARY STEEL.
Yesterday at breakfast I tried and failed at a very simple task: opening a new jar of Marmite. The effort of trying really hurt. I just couldn’t do it. I felt great shame at having to ask my wife to do the job for me. I’m not one of those guys who has to demonstrate physical strength to impress, but it still felt wrong.
Lately, I’m finding it difficult getting into various kinds of jars and pottles. I guess they make it hard to stop people from opening them in the supermarket and to make sure they’re completely air-tight. But it’s a nightmare for those of us who, later in life, have developed arthritis. I’ve had episodes with petrol pumps at gas stations that have made me feel like setting the whole place on fire, such was the frustration.
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At 63, I’m reminding myself increasingly of my late mother, who in her 80s had to devise time-consuming rituals to overcome obstacles that younger people would never think about: a magnifying glass to read the ingredients in packaged food products, a contraption to help put your socks on when you can’t bend down to do the job anymore, etc.
I keep on chancing across stories and television items claiming that we boomers have got it good and how back then, we had it so much better than today’s young adults. This coverage feels like it’s pointing the finger. Let’s blame the old guy for all the problems of the world.
But my generation respected elders. That’s gone. Instead, we’re shamed and torn to pieces for imagined transgressions.
Well, I would happily do a swap. I would happily give up whatever imagined privileges I have for a body that functions as it should and isn’t full of chronic aches and pains; for a future full of promise and potential.
Most of my issues stem from a disease that’s been with me most of my life, a condition that goes by the ungainly name of ankylosing spondylitis, with a side order of fibromyalgia. Ankylosing spondylitis is a kind of arthritis of the spine that ultimately fuses the discs of the spine right up to the neck, and while it’s doing the damage it can be extremely painful. It’s literally a pain in the neck. It can also be deadly, causing calcification of the aorta and lung and ultimately, heart issues.
I’ve learned to embrace my pain. I take meds for it although the gnawing unease never goes away. But hey, my symptoms are mild when compared to many sufferers of the disease. I can still walk, for one thing. With the help of the Biologic that my wife kindly injects me with every 10 days I can bend down to do the weeding and lift up my children. The downside is that it also lowers my immunity and much of the time I have a mild chest infection. So I stop taking it until I can’t stand the pain, and so the cycle goes on.
One chronic condition leads inevitably to another, and my early-onset osteoporosis is linked to the AS, as is a tendency at this point of life to have stomach issues. Lately, I’ve been diagnosed as having detached retinas, which makes my eyes super-sensitive and limits my screen time. Just on new year, I spent a night in hospital with atrial fibrillation. The beta-blockers my GP advised me to take for a year decrease my general sense of well-being while limiting how much exercise I can do without feeling faint.
But here’s the rub: at 63, you don’t want to be like my mother was in her 80s, visiting old friends and spending the vast majority of her time bemoaning the state of her health and the various ways in which society makes it hard for an ill person to cope. At 63 you still want to be vital. You should have years to enjoy the experience of life. And you’d like your experience to be harnessed by younger generations, but it seems the younger generations know everything there is to know because, you know… Google.
It feels churlish in your 60s to complain and make a fuss. So why do I know so very many in their 50s, 60s and 70s who struggle with the sort of issues I’m outlining? They struggle, they’re depressed, there’s no one to turn to, they’re not admired or respected, sometimes they’re alone, often they don’t have two coins to rub together. And all of them are really great people, with something to give. (You know who you are).
You don’t want to be a litany of complaints, you want to contribute. But you fall down the cracks. You’re not classed as an invalid, you’re not compensated by ACC, and you can hardly earn a wage but you don’t want to give up and go on the dole. Chronic conditions are rife and they eat away at the humans they inflict but there’s little acknowledgement of the suffering they cause.
I’m incredibly lucky. I’ve got an amazing wife and two children who I adore. Life is full of riches, despite the issues I’ve outlined. You’ve read about my experience but I’d love to hear from others with chronic diseases who have found it tough going. I suspect that on the edges of Gen X and baby boomers there’s a story to be told about those of a certain age dealing with a conflagration of chronic disease. In this new column and section of Witchdoctor – Age Against The Machine – I hope to look at all of the issues around getting older and chronic diseases and hopefully increase awareness.