The Fear of Psoriatic Arthritis Progression
Arthritis is destructive. Just as your body is effective at fighting off the common cold or that sore throat you developed over the holidays, it is equally adept at attacking perfectly healthy tissue, as is, unfortunately, the case in those of us with psoriatic arthritis.
Despite living with arthritis since I was just a child, it's a thought that makes me feel sick should I permit myself too long to dwell on it. Yet, there is one thought that churns my stomach more - the fear of psoriatic arthritis progression.
The game is rigged
I often describe my condition as a 'whack-a-mole' game to those who don't experience arthritis. Just as I address one problem, another pops up. This week's painful knee might quickly overshadow last week's rash.
Tomorrow, it could be the dreaded fatigue. It's a cycle of often repeat issues that can feel all too much to handle over time and almost certainly during periods of exhaustion. It also is in the hands of the length of time the current game or flare has been in play.
However, I have learned to appreciate that there is no way of winning this metaphorical game during my twenty-five years of living with various forms of arthritis. Yes, we may have periods of remission but what is often overlooked at the point of diagnosis, hidden away in the small print of the rules, is how the game will throw in new challenges alongside the reoccurring ones. The challenge of being faced with the progression of your arthritis.
Layers of difficulty
When I was a child, my challenges were simple. A stiff and painful left hip and slightly more difficult to control right knee. That was, until my late teens, when I developed active disease in my neck, spine and sacroiliac joint, leading to what was back then a diagnosis of ankylosing spondylitis.
Life was simpler then. We treated the active joints with a cocktail of steroids, anti-inflammatories, joint injections and hydro and physiotherapy. We didn't need to worry about historical damage, previous surgery or treatments that were no longer an option due to negative side-effects.
At 12 or 13 years old, I certainly didn't need to worry about responsibilities, a career, dependants or paying the bills!
A family man
Now, as a man in my mid-thirties and a toddler running around the house seemingly hell-bent on harming himself in as many ways possible during his waking hours, those concerns impacted by my arthritis rather than damage caused by arthritis, is all I worry about.
Leading to the fear of my disease progression bubbling to the absolute top of my list of potential risks to my family. Perhaps, unlike most, I have it the wrong way round, and of course, I worry about losing my mobility, wonky fingers and joint replacements - who wouldn't?
The part that really bothers me. The gut-wrenching, cold-sweat-inducing part is how that stops me from being an active parent, progressing in my career, providing financial stability for my family, and at what point do I become that thing many of us fear the most — a burden.
As I grow older and my fingers start to twist, my skin carries its scars, and my pain remains long after the flare peters out; I find myself looking forward more now than ever.
Looking towards what may not be possible with my son as he grows, how many more tasks can my wife take off my hands as things become more complicated. How many levels of resilience do I have left?
It's then here, in my darkest moments, when I think I am at the bottom of the barrel, do I see my strengths reflected back at me amongst the tears and the pain.
Progressing alongside the disease
For I have never found the bottom, I have never given up, and never ran out of lives. And as the progression of my disease pushes me to my limits and the chapters of life add more weight upon my shoulders, pressure that I put on myself to be a good father, husband, role model - that I realize I am progressing alongside my disease. The harder it gets, the tougher I become.
As it's these blessings, such as parenting and the pressure it brings, that adds weight to my punch as my scars grow in number. I may never beat the game, and I will always fear it, but I can still succeed.
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?