The Story of My Bones: Life With Rheumatoid Arthritis

I can feel it in my bones & it doesn’t feel good.

It’s raining outside & I know it before I even open my eyes. I can feel it in my bones. Literally. There’s a painful burning sensation in each of the joints of my fingers & my shoulder aches a white-hot pain that send flashes of electricity through the left side of my body. I open my eyes & hear the rain on the tin roof outside.

I knew it was raining, I tell myself, as if I have some psychic, superpower connection to the weather. Really, all I have is pain.

I read once that this is a myth. I read that people with arthritis don’t endure flairs of pain when it is rainy & humid outside.

Come to think of it, I’ve read a lot about my illness.

I’ve read that if I stop eating meat my body will heal itself. I’ve read that if I cut back on coffee the pain will subside. I’ve read that if I don’t eat tomatoes, or other nightshades, everything will be fine. I’ve read a lot about cure-all remedies. I’ve even had anonymous people invest hours in sending me unsolicited advice via Facebook, as if they had a point to prove, like somehow, the studies they found on Google trumped my own experiences.

I’ve lived with this disease for 15 years now & I’ve tried it all. I’ve tried diets. I’ve tried exercises. I’ve tried invasive & side-effect ridden medicines. I’ve tried everything & still I ache.

Living With Rheumatoid Arthritis

A Fading Body & A Tired Mind

Worse things have happened to better people. That’s my mantra. Those words play over & over in my head as I stare down at my twisted fingers.

I recently realised that I can’t hold a pen properly anymore. When I try to write, my once impeccable printing is now crooked letters written almost on top of one another. Still, worse things have happened to better people.

So I build up walls. They are thin walls built out of my other mantra, dont look too closely. I try not to, but the walls are a thin & permeable membrane & I can see the certainty of fear on the other side. If this is what I’ve become at 34, what will it be like when I am 50? How much more will I lose.

“Shut-up, Britten”, I tell myself & I try some other diet.

I gave up gluten for years. I deprived myself of the deliciousness of freshly-bake bread. I stopped eating Sour Patch Kids, which were my favourite. I read labels of everything I consumed. Still my fingers curled into claws & people kept telling me about the secret cure they’d just read about.

“Just try this one thing,” they’d say. It was well meaning advice, so I would have looked like the bad guy if I’d slapped them across the face like I wanted to. Also, it would have hurt me more than it hurt them. Again, literally.

My hands throb. My twisted little fists ache every single day & that’s just the tip of the iceberg. My wrists are always white-hot knots of pain which delight in sending out zingers every now & again making me outwardly flinch in public & at inappropriate times. My elbows burn, my shoulders are pierced my paralysing pain that wakes me in the night. My feet…god how my feet ache. My ankles & my knees hurt & when they’re called to action, they send blistering pain pulsing through my body on nerve synapses that burn & explode like fireworks in my body.

What trumps of all of the pain is that I’m tired.

My body aches, but, more than that, it is deeply & profoundly exhausted. I feel this need to rush, to accomplish before my body gives out & I am a crumpled & immobile mess, but I am tired. I am exhausted. The depths of exhaustion are something uncharted for those with healthy bodies whose minds aren’t foggy with fatigue all the time & I want to fight someone because the thought of this isn’t fair seems to creep into my mind in the moments when I realise the limitations imposed on me by the failing vessel that is my body.

“Shut-up, Britten! Just shut-up!” Worse things have happened to be better people.

Why Not Me

On the other side of the thin membrane wall that exists in my mind is the self-pitying thought that I can barely keep at bay, why me? My mind wants to shout it out as a battle cry, like screaming would make anything different.

“Shut-up, Britten”, I tell myself & on the heels of that I say, “why not me?”

Humans speak in platitudes. We utter quips & phrases which offer comfort in their concept, yet offer no real practicality. What doesn’t kill you makes you stronger. What? That’s hardly correct. What’s not killing me is making a husk of a person & I feel like I would blow away in a strong wind. I am weakened physically & mentally. There is no strength here.

The utterance of these phrases gives us solace in the moment, but that solace is a shallow thing. It’s the wading pool my sister & I used to play in as children when we’d summer in Toronto. The water was a murky shade of brown, & every now and then there’d be a warm spot where we’d huddle until the warmth dissipated – never did we realise this was probably where someone had peed.

Instead of platitudes, I’ve built my own internal doctrine of mantras & thinly veiled denial, all held together by the theory of “why not me”. Who would I place in the circumstances in which I find myself. Whose body should achingly curl into immobility? Who would I swap places with.

If I’m honest, my answer would be “absolutely anyone” & “to be pain-free for a day, I’d swap bodies with anyone”. Then, I flip the narrative in my head & proclaim that I wouldn’t wish this on anyone else & on the heels of that – worse things have happened to better people.

Worse Things Have Happened To Better People

“Stop moping, Britten”. This is the self-talk that plays on a loop in my head. “Stop moping, Britten! Worse things have happened to better people.”

In writing an article for a website I used to work for, I once spoke with a mother whose daughter was fighting for her life in a hospital. Her 8-year-old body had 3rd-degree burns to 97% of her body. There’d been a house fire & her father carried her out of the house before perishing in the fire.

The little girl languished in the hospital for 64-days before her body gave up & that isn’t even the worst that life can throw at us. There are illnesses that turn us to stone. Diseases that rob of us of control of our body, ones that slowly paralyse us until our lungs & heart eventually give into the illness & our lives fade away. There are diseases that take our cognitive function from us & leave us confused & unable to sort out or comprehend that world which had previously been seen & devoured as our oyster.

Comparatively, I should be grateful. Worse things have happened to better people & self-pity is among the remedies that just don’t work.

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Who is Britten? She's a reticent little beast born in the wilds of Northern Alberta to a foul-mouthed, French-Canadian father & an angry, stiff-upper-lipped mother. Britten is, almost always, wild-haired & poorly dressed. She recently left the beautiful & untamed chill of Canada for the blistering & somewhat oppressive heat of Australia. Her list of pastimes is short & includes reading, writing, petting cats, overeating & alphabetizing things. She's a fan of Windex on Facebook because who doesn't want a streak free shine? She dreams of one day writing a super-awesome novel that affords her & her partner a comfortable lifestyle, a large property, a few horses & the means with which to foster children in need...or just becoming a red panda.

When Britten isn't writing, reading, or organizing things in her home, she can be found cuddling with her boyfriend, arguing about why Rajon Rondo is the best point guard in the history of ever, browsing Gumtree for a future cat or kitten, or contemplating days gone by, the passage of time & how ridiculous it is that humans have yet to evolve enough to grow a third set of teeth.