Rheumatoid Arthritis and Disability - International Day of People with Disability

 At the time I was first diagnosed with rheumatoid arthritis, I had a nine month old baby, I'd been working a part-time job, I had a contract with the local state opera chorus, and was managing a household with a largely absent husband and a primary school aged child as well as the baby. 

My job was as a chef. I'd left my more high powered catering job and taken this part time job cooking in a child care centre. It was close to home, I could take the baby when I went back after maternity leave, it meant I could be available for school pick ups, and it was way less pressure than the previous job. It ticked a lot of boxes. Until my hands started to fail me. Losing control of my hands meant I had 'interesting' events like watching large chef's knives flying across my tiny kitchen, having to find another staff member to operate a manual can opener for me, struggling to peel potatoes for 45 meals, and so on... 

Ultimately, I left that job. Managing a new, unstable disease was hard enough, without trying to do a job that was clearly aggravating the situation. That was thirty odd years ago now. 

I wish I had the ability now that I still had back then. 

I struggle with the concept of disability. My social media today is peppered with posts commemorating the International Day of People with Disability. Lots of disability pride stuff. Lots of advocacy. Lots of attention being paid to various solutions that evolved to keep people working through pandemic lockdowns that happened very quickly - thanks, technology - but that the disabled community have been requesting for decades, with those requests falling on largely deaf ears...seemingly all too hard, until the majority of society required flexible arrangements to continue working. 

The thing is, my life hasn't changed enormously since COVID took over the world. The last time I worked in a job that took me away from home to an outside work environment was in 2013. That's the year the disease exploded without warning, and went from being mostly manageable to being completely out of control - to the point that it landed me in hospital, almost unable to walk. I continued, at that point, with remote access, to do most of my job - even from my hospital bed. Ultimately though, with insufficient pharmaceutical interventions due to the PBS regulations that saw me waiting almost six months to begin biologic drugs, I was medically retired. They needed a warm body in the office, sitting in my chair, and answering my phone, right there... And my warm body could no longer be guaranteed. 

It's taken me some years, but slowly I've built a mixed practice of writing and art that, while it doesn't earn me enough to live on, augments household income noticeably, and gives me a reason to get up in the morning. None of that changed with COVID. 

As I type now, I'm reminded via the pain I'm currently experiencing, of that time back in 2013. My most recent biologic failed. It had been failing for some time, and I'd been having an ongoing conversation with my rheumatologist about what to try next. But because a new drug takes time to kick in, there was the real possibility that in that gap between stopping the old one and the new one kicking in, I'd go backwards even further. And that's where I am now. I'm two weeks in on a new biologic. I am going backwards. My days are a haze of pain and exhaustion. My sleep is patchy, interrupted by pain. I'm getting work done, but not evenly, and not enough. 

I currently have a swag of deadlines. Art works that are time sensitive - because, Christmas. Sewing - which I took on almost a year ago to earn some extra dollars - which is also time sensitive, for the same reason. The writing, not so much as that will tail off a little now until next year. I finished the fourth drawing in a set of four miniature works, and should be drawing in one of the other pieces awaiting attention, but, my hands are really bad. Typing is painful too, but if I splatter typos all over the place, I can fix that and no one will know they were there. If I splatter paint or coloured pencils in the wrong places on an artwork, that's a whole other matter. And there's sewing to prep too, only I can't manage the cutting out scissors today, and I can't start any of the current batch until I can cut out the fabrics. 

The thing is, RA is a progressive and degenerative disease. It's not curable. The only way is down. The drugs, if a combination can be found that is tolerable - I am REALLY good at adverse side effects - and that works, help slow down the progress of the disease and prevent damage. But they can't stop it. In the time up to 2013, while it was comparatively mild, I was on very little medication, apart from NSAIDs and pain meds when required. Now, I have piles of pills to chug down twice a day, and a slow release opioid patch stuck on my left shoulder that I change every three days. These meds enable me to live a relatively normal life. 

Except, it's not normal any more, in that I can't work. Not if working means showing up in an office at the same time every morning day after day for the whole week. My body won't tolerate that at all. It's far too unpredictable. I can't rely on it to be consistently OK. Well, I can't rely on it to be any kind of OK... 

What I'm dealing with is known as 'dynamic disability.' It's a relatively new term in disability speak. It refers to those of us with chronic illnesses that cause unpredictable ups and downs of wellness. We have days where we can manage to do most of the stuff we might want, or need, to do. And then we have days when we're on the couch. In between, there are the days recovering from those days we did stuff... 

Last week, I had a morning when I woke up and tried to get out of bed, only to discover that one hip had decided overnight that not working at all would be a fun game to play. It took me a very long time to get to the point of sitting on the edge of the bed. Then I had to figure out how to get out of the bedroom - the pain in my hip when I put weight on that leg was excruciating. The nearest walking stick was folded up on shelves in the front hall, about six or seven metres away. The bathroom was another six, the kitchen seven or eight more, and the living room and its couch, a further eight or so... I did get there, eventually, and incredibly painfully. And added extra painkillers to the eggcup of morning meds, then jammed a hot wheatbag between my hip and the back of the couch, exhausted, waiting for the painkillers to kick in.

If I'd had to have been anywhere early that day, I'd have been in real trouble. Dragon Dad is working night shift at the moment, so although he was at home, he was asleep. I'd have woken him had it been an emergency. But it wasn't. It was just a bad day, when the RA bit me hard enough to remind me that I now live with a disability. A disability that doesn't play fair - ever. A disability that changes unpredictably. That one day lets me get out of bed, albeit stiff and sore...but then the next day makes that an almost impossible challenge. 

Most of the people I know with diseases like mine also struggle with the idea that we're disabled. Most of us tend to keep pushing ourselves to manage, adapting and working around the pain, the stiffness, the joints that don't work properly, the fatigue and the brain fog. But we resist labelling ourselves as disabled. 

Why? There's no shame in being disabled. Well, there shouldn't be. The lived experience can be very different though, for many people. I have been very fortunate, in the scheme of things. I have skills I can use to create work for myself. I have a partner who earns enough to support us both. The money I earn covers most of my personal expenses, and sometimes can add to the household kitty. There's no denying though, that our lives would be easier if I could just go out and get an actual job. At the same time, we both know that that's not physically possible for me now, because where are the employers who will take on someone who can't be counted on to turn up each day, and be well enough to stay all day?!  They don't exist. Neither do the jobs. 

So, on this International Day of People with Disability, I'd like to offer a shout out to the people who, like me, have autoimmune diseases that tease them with good days that let us think we're still normal, only to bring us crashing down with flares that leave us on the couch for days in a haze of extra painkillers. I see you. I understand the difficulty of claiming that disability label. I understand the conflict you may feel when you see other people with disabilities talking about disability pride, and loving their disability. The people who don't want to be 'cured' of their disability. I see them too. And I'm accepting of the fact that their stories are different. That they're absolutely right to be proud of the people they are. 

But, if someone comes up with a cure for RA, believe me, I'll be lining up for it. 

Work in progress, mixed media