I haven’t written much on here recently; instead I have been playing music and trying to stay dedicated to the twice weekly hydrotherapy and once weekly yoga classes I rely on to keep this arthritis-riddled body moving.
Last month I saw an orthopaedic surgeon for the first time, who looked at my misshapen and barely functional feet and made a few suggestions.
So, I will be presenting the long-ago-fused bones on my right foot for CT scan and intra-joint steroid injections, and having one of my gnarly left foot toes surgically straightened before month’s end. And hoping for good enough results that might even see me walking more than 20 metres without pain and limping. But I am not overly hopeful.
All of this has started me thinking again about mobility in general. Thirty-seven years ago my Rheumatoid Disease really did a number on my hands and feet, completely destroying a number of my small joints and forever impeding my ability to walk, stand, or use my hands in repetitive ways for more than short periods. I don’t ‘look disabled’ but ‘disabled’ certainly applies to the way I live in the world.
Instead of travelling, I follow friends’ facebook feeds to experience places I will probably never visit and, even if I could visit, would invariably not be able to physically access due to my compromised mobility. (Well, it’s better than nothing.)
I don’t go places that require walking very far. If I can’t be dropped at the door or park nearby, I just don’t go. A weekly supermarket shop requires rest for the remainder of the day. An exercise class, likewise, often with extra pain medication. A music gig necessitates one to two days in bed afterwards. A recent trip to Melbourne for a family wedding took four days of recovery, and a truckload of (extra) pain pills and steroids.
I used to have a Disabled Parking Permit but let it lapse. I can’t use it in Brisbane anyhow. Some years ago, the City Council’s response to limited disabled parking spaces was to make them only accessible to people with blue permits (ie. wheelchair users), leaving red permit holders (everyone else who is disabled but not using a wheelchair) with no access. I know because I was fined for using a BCC Disabled Parking Bay with a Red Permit. So, attending anything in Brisbane City is usually out of the question.
(Since posting this, I have received some updated information: The Queensland Government has now stopped issuing the red permits, which is encouraging. Might be worth reapplying for a blue one now after a decade without one.
Also, I wonder if I could get a refund on the $100 plus fine I was slugged with for … y’know … ‘using a disabled space while disabled’ … which has kept me out of the city for so many years.)
In the first decade of living with this disease, I would frequently dream of running, usually on a beach … but that has stopped now, as has my hopes of ever actually running again.
Yes, things could be worse, but I write this to point out how invisible a disability can be, while still impacting significantly on someone’s life.
Do not pity me. I’m doing well. Most people I’ve known who have had RA for this many years have had multiple surgeries. These are my first. I have been fortunate, and I call myself an ‘RA Warrior’ – because that is what I am.
I am strong. And I never give up.
I have done battle with this shitty disease for close to four decades – and will continue to do so for the rest of my life.
So, if you take one thing away from this post, let it be this: You can never tell what’s going on in someone’s life just by looking at them. Disability is not always visible. And please, don’t be unkind to people who need welfare. It may be because they actually need it.
One thought on “Living with an Invisible Disability 101: So, finally, the surgeries come for me …”
Very true, Liz. You are a strong person and I am sure you will get through all this. This blog is very nice, informative and, no doubt, a great therapy for you. We can all learn from your experience. We tend to prejudge people too soon. Yet all of us have some sort of disability, not necessarily physical as in your case, but prejudging in itself is also being unable to empathize with others. That is to me one of the worst disabilities of humankind.