By:N.A. Le Brun
I’m a writer. It’s what I do. I write fictional pieces because I envision these worlds of make believe so clearly, and the characters within them with such detail, it’s easy to put them down on the screen to share with the world. But I can’t explain what it feels like to be trapped in a body encumbered by the total agony of fibromyalgia. Why does it hurt this much?
In the past 18 months, I’ve gone from using walking sticks and crutches to needing a wheelchair outside of the house. My hips and legs no longer give me the support they once did. My muscles and joints hurt on a constant basis, the only difference is the type of pain and the severity. Is my spine made of glass?
A good day with fibro means I have the spoons to see friends, go out, get some basic tasks done. If I’m lucky I have a few of these in a row. A bad day means I’m lying on my bed too sore and too fatigued to even sit up, and turn on my laptop to watch Netflix. Today is the latter and I know I need to go outside to get food, so my sister is having to help me get up and get dressed. Every little task is taking four times as long and every little movement sends a ripple effect through my body. Why are my thighs burning after sleeping?
My beautifully creative brain is trying to rush off to those lands of science fiction its created, whilst my body is screaming for my nerves to stop misfiring and sending pain signals every second of the day. Hair shouldn’t hurt, should it?
Being dressed is an accomplishment, even though I had help with it. Part of me remembers with envy the days when taking an hour to get dressed was because I couldn’t find something I liked the look or feel of for that day. These days, if it takes an hour, it’s because for every item of clothing I put on, I need to take a rest. Does it really matter if my socks don’t match?
A trip to the shops after getting dressed on a day like today means that I’m exhausted and I want to just collapse once I get home. But, I force myself to put on the laundry and I make an agreement with my sister that she’ll hang it in the airer and cook dinner so I can lie down again and watch Netflix. Why does my skin feel like it’s on fire?
The rest of the day is spent with my sister helping me back into pajamas, and lying in bed watching my favorite shows and films. I can’t really do much else. Although my characters beg to be written, and I’m desperate to work on them, I can’t sit up for longer than five minutes or stay lying down in one position for long. Is my head really this heavy?
I’ll take my meds an hour before I attempt to sleep, and I’ll pray that sleep happens and sticks tonight. If it does, then tomorrow may be an easier day and I might be able to catch up on the things I wanted to do today. But if sleep is evasive, as it often is, tomorrow will bring whatever it brings. Will this whirlwind of pain and insomnia ever stop?