Hi there, my name’s Martin, also known as Fibro Jedi. I’ve been married for nearly ten years and have a “fur baby” (a wee tabby cat), and a human baby who I refer to as NJ.
Without wanting to sound like I’m introducing myself in a “Chronic Pain’s Anonymous” group, I wanted you to know about me, then about my coping mechanisms.
My Road to a Diagnosis
I’ve probably had symptoms of Fibromyalgia since I was 13. It started out as a neck sprain lifting sound equipment while touring with a band. Gradually it moved to my shoulders and nothing improved the pain levels for more than about an hour. It was only in my early twenties, some ten years later that I was finally given a diagnosis by a specialist in my local hospital.
“You probably have Fibromyalgia,” she said.
Probably. Because Fibromyalgia is diagnosed firstly by ruling out all other possibilities, then testing major pressure points—a test that hurts! Fibromyalgia is a wide-spread nervous system problem. The whole body is wired with this so when it goes wrong, the whole body knows about it. I get pain in my hands, arms, head, necks, shoulders, and more recently, in my legs.
I am on a wide variety of medication, but the doctor is trying to get me off many of them so we can see what is going on. And hopefully start a plan for managing the pain in the new year.
So that’s my health. It also explains the “Fibro” part of my alias. But why “Jedi” and what does this have to do with writing?
Star Wars and I
While not knowing everything there is to know about the Star Wars universe, I do know a fair amount. And historically I had seen my life as leaning more towards the Light Side views of the Jedi. Maybe I’m more a balance between Dark and Light these days. Hence the name: Fibro Jedi.
Gaming as a Distraction
One of my main coping mechanisms with chronic pain is distraction—making the time go faster. And my way of doing this is gaming. I play an online game called Star Wars: The Old Republic. I can socialise there (if I feel up to it), but I can also develop characters and stories. A combination of storytelling and combat action, it gives me breaks to rest my hands. And it successfully passes time quickly.
Writing for Sanity’s Sake
What this game has helped do is re-ignite a love I used to have: writing stories based in the Star Wars universe. In the past I would get on an old-school forum and add a post in linear timeline with the previous person’s post. Now I am in control of the whole story. Although the game triggered my imagination, I use it as a “springboard” but nothing more. I aim to be creative and to build believable characters. I don’t want to publish a book (I couldn’t afford the publishers anyway); I want to write, to quote a former client when I used to work, “for Sanity’s Sake,” and for the love of doing it. So I use my blog to do just that, developing characters like my most recent story-writing, Talitha’koum.
I knew I’d begun to really get into my characters when I had an emotional reaction to both writing and proofreading one of their chapters. I am already thinking about the next few episodes for these two characters and hope readers will continue to join them, and me on their journey.
Creativity Can Help You Cope
Being creative, without having to be creative, is a great outlet for me as a Fibromyalgia sufferer. It enables me to think about something else—anything else. And when people give me good feedback, or say they want to get the next bit soon, then that’s a positive experience in what is otherwise a challenging life.
I’ll leave you with an excerpt from one of my character’s stories.
Seeing her enter the chamber, Ulthius unsheathed one Vibroblade and then a shorter version, flicking them both on. The buzzing seemed to echo around the chamber.
“So you made it this far, Talitha. But this is the nearest you will get to being Sith.”
The Twi’lek was just taking in the scene. They hadn’t been trained to dual wield, making this fight against rules. Only rules didn’t apply down here.
She took off the outer layer of her garments, leaving her protected torso and loose trousers on, which gave her more manoeuvrability.
“You presume too much, Ulthius.” she stated quietly.
“Maybe, but I know the Masters despise you. I am darkness and I will destroy you.”, he adjusted his stance.
Talitha flicked her blade on and prepared herself.
“Well let’s see if you can back that claim up then, shall we?”
He curled his lips in a snarl, drew on the Force to increase his speed and leapt at her with both blades.
From: Survival of the Sithest (View all Chapters)
You’re Never Alone
I hope this wee article helps someone else out there to see that the Chronic Life is really, really hard—but there are ways to shine small lights into the darkness, instead of know you being drowned by it.
Whatever you need to do “for Sanity’s Sake”, do that. But know you’re never alone with your illness.
Martin, also known as Fibro Jedi, is a Fibromyalgia sufferer who lives in Scotland with his wife, furbaby, and human baby. Feel free to follow him on Twitter. He says,”I type when I can control my hand pain, but I aim to reply to everyone eventually.” You can also follow him on his website!