Friday, 15 January 2016

Living With Ankylosing Spondylitis

Rewind to August 2014. I can't remember what date, because as I had for two months straight, I was working 7 days a week and 12 hour shifts as a lone retail manager with no breaks. My doctor gave me the news and I only had ten minutes to digest it before I had another shift on my own in the shop, enforced by a boss that insisted my needs were not greater than a pregnant colleague who needed the time off more than me. A week later, I cracked a number of ribs due to overworking myself, but once again, pregnancy trumped my condition and I was forced to work that same 12 hours a day 7 days a week through the agony of cracked, irreparable ribs.
Since I was 11, my joints had been deteriorating. Cracking, snapping, stabbing, nagging, agonising. I slipped a disk in my spine at a gym session in school, but my doctors reassured me it'd just go back in eventually because I was young and still growing. Within months, my hips gave way, the first of many joints to volunteer their wish to depart from their neighbours.

To say I'd been in and out of GP surgeries, paediatricians, osteopaths, rheumatologists, physios and orthopaedics my entire life would be the understatement of the millennium. I've seen more hospital wards and surgeries than I care to remember. Every single one, however, had told me my issues weren't arthritis-related or anything to worry about, because according to every medical practitioner this side of the Milky Way, "everyone has clicky joints and a bad back."

Back to August 2014. I'd managed to persuade my GP to test me for the HLA-B27 gene, the gene which causes a condition called ankylosing spondylitis. Put as simply as my non-medical mind can explain, AS is the result of chronically inflamed joints that fuse together over time, both rapidly and glacially on a case-to-case basis. Sometimes known as the "bamboo spine," AS targets the spine and the vertebrae abruptly depart the friendzone and make a permanent commitment to each other.

The test came back positive. I have ankylosing spondylitis.

Fast forward to the present day and you'll find me perched on a riser recliner, wriggling in agony because there's no such thing as a "comfortable spot." Close by are a walking stick and a grabbing tool, should the nearest chocolate bar prove to be a stretch too far from the non-comfortable spot. My left knee is pretty much incapacitated, so I'm no longer able to sit with my knees up, the only way I've ever found comfortable in all my years of suffering. Soon, the not-so-comfortable spot becomes unbearable, so I retire to lie flat on the floor or back to bed to merely stare at the ceiling.

There are no words to describe having to watch my mum watch me deteriorate. When she has to completely rethink plans around the house to accommodate my inability to walk the dog or clean up behind my cat. When she has to park in disabled bays closer to amenities purely to save me from screaming in agony before I've even left the car. When she has to sit with me in the ambulance as it carts me off to another pointless A&E venture to explore why I can't move my neck, back or both. When she has to ask me if I'll need to take my walking stick into a shop, should the other customers assume I'm an able-bodied 23 year old woman that can duck and dive past trolleys and buggies.

Alas, I'm not an able-bodied 23 year old woman. I'm a 23 year old woman with a debilitating bone disease that won't go away no matter how many times I namedrop it on Twitter. No matter how many cocktails of medications I take on a daily basis purely to help myself sleep through the pain. No matter how many times I convince myself that my condition won't beat me, I'm still reminded that I can count my remaining mobile years on one hand, that my days spent in a wheelchair aren't far ahead of me, they're just on the horizon tormenting me.

This is not a plea for sympathy, despite how sickening the fact is that I even feel the need to lodge that kind of disclaimer. I'm merely hoping to raise awareness of conditions like mine that you may not otherwise be conscious of. If someone is taking a while to walk around the shops or down the street, don't immediately assume they're being obnoxious, they may not be capable of moving as fast as you. If someone cancels plans frequently, claiming they're not well enough, don't immediately assume they're making it up to dodge plans, perhaps they're seriously having a bad day and they don't have the physical strength to leave the house. If someone gets out of a car in a disabled bay, don't immediately scan them for visible disabilities, because perhaps you're part of the problem. Perhaps they'd rather the ground swallowed them up instead of having to feel your eyes burning into the back of their head.

Perhaps a little respect and consideration goes a long way.

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