What’s with the creaky joints?
I‘m not always thrilled to be one of the 6.8 million Australians to have a musculoskeletal condition. But I have learnt to adjust my life like so many to accommodate the burdens of muscle, bone and joint health conditions. Otherwise known as Creaky Joints.
I have good days, bad days and CRY days. (AKA Creaky Rheumatoid Yelps days).
I regularly grapple with aching, swollen hands and painful knees and ankles cricoarytenoid arthritis which means my throat is swollen in pain and my voice box hoarse. I also have TMJ in my jawline and Osteoporosis in my neck. Somedays I get incredible ear aches. Kinda sucks, but them’s the joint breaks.
On the tough days even crossing my tender legs to get comfy in a chair, or driving a car with stiff and tender elbows, or typing at a keyboard are impossible. Where I can, I’ve adapted my life and created a business to work around the challenges.
Still, like 6.8 million others I put on the happiest face I can (with liberal sprinkles of grimaces) and get through my days, and restless nights. I’ve learnt to adjust and accommodate an invisible illness that is often incredibly difficult to ignore when your body fights with itself.
Over the years I have altered treatments, become a better advocate for my health regime and created a positive relationship with my specialists. It’s been a battle but I have also learnt that this is a disability that limits how I can plan to go about my days, and that pain management is a daily consideration to ensure I can move.
I have a self-injection regime with a biologic for joint stability and swelling relief. These come with other side effects such as a higher risk of skin cancer and possible compromised organs as the spin off. But bit’s my gamble to maintain movement. I complement this program with my Rheumatologist with aqua warm water therapy, yoga, nutrition advice, an Ear Nose and Throat specialist (because lucky me gets TMJ and also a raspy throat joint) and attending workshops and webinars put on by helpful organisations..
So, what’s with the creaky joints?
Some days you’ll see me walk with a cane, or hear me mention that I can’t type on my phone (tiny keyboards are the worst!) or you may see me have a hard time swallowing or sounding as hoarse as if I spent a misspent youth behind the bike shed smoking fags (nup, I didn’t).
Rheumatoid Arthritis can make anything from peeling spuds, putting petrol in the car, holding a folder, standing, sitting, lying down, sitting at a desk and even brushing your teeth painful. And if I’ve got a full dance card of events I plan very, very, very carefully in the days, weeks ahead to make sure I rest so as not to have a flare up. I rest a lot when I can. I say ‘No’ to things. Most days I move with joints that feel like they are molten flames – but I am so used to that that it’s the flare up times that send me gnashing (or whimpering) into my flare up pain cave.
I may not have my b-b-bounce but my creaky joints and I manage. I am my best advocate. As in anyone else who lives with this auto immune illness.
On other things I’ve learnt over the years is that I know my illness, and I know the treatment that works best for me. I also know that folks who stand in front of me and tell me all about their arthritis ailments (NOT the same as RA), how tumeric will cure all, how they cured themselves without any drugs at all, how I am too young to have RA, how putting biologics in my body will make me more sick, how I’ll feel better after a bit of rest and a Panadol – well, these are not my people, nor do I turn to them to plan my healthcare.
Over the years I’ve been surprised to learn how insensitive and ableist folks can be for people living with chronic illness. Sometimes people get tired of me stating my health situation. So I keep quiet. Sometimes I feel disappointed and bemused all at once when people extend sympathy or acknowledgement only on the days I walk with a cane – an interesting experiment on how this is an unseen illness.
Over the years I have been an ambassador for Rheumatoid Arthritis and shared my experiences in interviews
I share the many interview links below as I’m often asked to share my experiences.