Propping up a dodgy memory

For those not on Facebook. I did eventually go to the fuss of submitting it to The Mighty, but then learned some disturbing things about the way the site was headed, so I withdrew it.
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Maybe this will explain my life a little more clearly. Having worn myself out writing it as a first draft, the plan to submit it to The Mighty as a contributor article is now beyond me. Maybe one day I'll find the spoons to tidy it up, go through their submission process, write a bio, find a photo, deal with their editors... but maybe not. It got this far. It is enough.

eta: This entry will change a bit over time as I make small edits but will not change substantially.

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I am a Fibro Gladiator

People with fibromyalgia/ME, chronic fatigue syndrome, and related disorders and complications often refer to themselves as “Fibro Warriors”. I get that – every day is a battle, but warriors have some choice in the matter. They may have been conscripted as soldiers, but you don’t make it to warrior status without training and dedication and a degree of choice. Warriors can even retire. I have yet to encounter a fibro person who has dedicated and trained themselves to be where they are today. Both have fought and survived many battles to be alive today, but that’s not the only way to fight.

I am not a Fibro Warrior: I am a Fibro Gladiator. I am a slave with no hope of release except through defeat and death in one of my daily battles. (For argument’s sake I’m a political prisoner who will never earn my release, ok, historians?). Every day I am forced out into the hot sand or icy cold of the arena, armed with a random and inadequate supply of weapons and armour, to face an unknown opponent or opponents. The To-Do list, the shopping, cooking, endless decisions, basic self care, paying the bills, dealing with government websites or the tax office, the disappointment of constantly turning down invitations from friends, unavoidable family gatherings, doctor’s appointments, unwanted advice, actively harmful advice, deaths, house maintenance, laundry, crime, storm damage, random injuries or viral infections, physiotherapy, disbelief, pet care… and the minor issues of pain, fatigue, stiffness, loss of balance, brain fog, unregulated temperature, anxiety, depression, doubt, fear, guilt, grief, loss, rage, tears, and whatever else the world decides to throw at me that day.

If I am lucky my weapons will include a net, so I can subdue at least one of my opponents for a time, but they always return.

Some days the odds are in my favour and I can spare some energy on flair to entertain the crowd. I like that.

Somehow I’ve survived every match I’ve been forced to fight so far, but every day I'm injured and worn down that much more. As in ancient Rome, I have many supporters in the crowd who want to see me win every day and come back for more. They shower me with love, cheering, and rose petals, but they are all distant dots behind the barricades. I am not the only Fibro Gladiator by any means, but we must all fight our own battles as individuals. When we are returned to our cells under the arena we might exchange tips and tricks, but with every battle and every day being unique, it’s rare that any of these has practical value. The camaraderie helps a little, but only a little.

And so to my cell, which is at least surprisingly comfortable, with lots of cushions and books and a laptop. There I do my best to recover for the unknowns of the following day. There is no bed, because sleep is a foreign concept. I have attendants, a few familiar faces I see regularly, but I have to always tell them what to do – they care, but they have no initiative. All the emotional labour is mine to bear.

And that is my world, day after day after day until I fall: the battles in the arena; the heartfelt but distant support of the crowd; the voices of my fellow gladiators through the walls who sometimes don’t make it back; and my lonely cell.