Arthritis / chronic fatigue / chronic pain / Spoonie Challenges

I’m not a ‘real’ Spoonie.

It’s just aches and pains; I’m not a real spoonie. That’s what my brain tells me and has been telling me for the past five years.

I was first diagnosed at 30 years old with mild Rheumatoid Arthritis (RA) in the joints of my big toes. At the time, it felt like I had dislocated or broken my toes.

It took me four years to associate that pain with the ache in my hands and arms. RA is an autoimmune issue, which means, just like my severe allergies (a whole other post), my body is attacking itself. In this case, it’s my immune system attacking my joints and tendons.

I remember my mom complaining about the ache in her hands, and I thought it was something you get when you’re old. She wasn’t much older than I am now, so I was definitely wrong—I’m not old.

Thankfully, my RA is mild. What this means is that most of the time I’m living with a pain level of 3 or 4 (annoying but I can still work). As I write this, it’s closer to a 6 and on my worst days can reach a 7 (I want to cry but can get things done anyway).

Desktop featuring a cup of coffee, a spoon, and part of a laptop keyboard and screen.
ID: Desktop featuring a cup of coffee, a spoon, and part of a laptop keyboard and screen.

As a writer, coffee roaster, and layout artist, my work is completely dependent on my hands (and partially on not falling on my face while walking). Thankfully, the pain doesn’t get too high too often, but the other symptoms are what frustrate me.

I’m not a fan of the weakness, random fevers, and loss of energy. I haven’t experienced the loss of appetite or Rheumatoid nodules (firm lumps under the skin).

Clumsiness is the worst part of RA (technically it’s stiffness and swelling)—it makes my hand feel like they’re ten sizes too big for all electronics. Unless I’m actively concentrating, my hand lets go of things. Even worse, if I’m not careful and stretch, my level of pain increases. I also have to make sure I pay attention when I walk or my big toes will lose balance.

I’ve ways of working around it. I have special computer mice that let me rest my hands in a casual way. I know that I can’t type on a keyboard if the keys are too close together and I’ve increased the size of my onscreen keyboard for my phone. I avoid handwriting anything. I make sure to stretch and flex my fingers and I take regular breaks. The most important thing is for me to listen to my body. When I start feeling extra sausage-y, I have to compensate and not get frustrated.

The way things are going, I’ll probably need to see a specialist soon, and they’ll give me a better idea of how to manage as things get worse.

The great thing is that typing doesn’t hurt more. When I get into the zone, everything falls away, and it’s like I’m suddenly watching a movie instead of making up a story.

So it’s just aches and pains, but I guess I am a Spoonie. I can HANDle that.

Pun intended.

Éric Desmarais.

Éric Desmarais has had an eclectic career, from casino dealer to canal boat captain to radio station DJ. Since 2009, he’s worked as a layout artist and desktop publisher for the federal government. During his off time, he works as a freelance layout artist for various Canadian-based authors and publishers, roasts gourmet flavoured coffee, runs several pen-and-paper role-playing games, writes, and helps run (Home of the Prix Aurora Award fandom blog, The Travelling TARDIS. ) Éric has published several novels with Presses Renaissance Press, and the second book of his Baker City Mystery YA series, The Sign of Faust, is shortlisted for a 2019 Prix Aurora Award.

He lives in Ottawa, Ontario with his wife, daughter, and newborn son. You can read more about Éric on his website and find a list of his books at the Presses Renaissance Press online shop!

One thought on “I’m not a ‘real’ Spoonie.

  1. Pingback: Carpal Tunnel Syndrome and Stress – JenEric Designs

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