Just over a year ago, I had ambitious but realistic plans. I was traveling, hiking and exploring the U.S. as much as I could. Then, out of the blue I began struggling with pain and fatigue Every. Single. Day. That’s not just a little headache or I’m tired. That’s full body aches like I have the flu. That’s fatigue like I haven’t slept in 48 hours. That’s everyday. That’s my constant baseline. It waxes and wanes but it never goes away, at least it doesn’t for me. My normal existing is you on a sick day. Or hungover. That’s how I’ve lived for the last year and eight months.
For reference, I’m forty years old; I am petite, and not overweight. I look perfectly healthy. Everyday it’s something new. Each day is a constant battle on an all-terrain track: full of dangers, no idea where I’m going or what I’ll hit next. I’m in an infinity roundabout of symptoms. Every obstacle is calculated to avoid risk but the outcome is never predictable no matter how hard I try. The variables don’t matter.
I’m always thinking ahead, and calculating, “How am I going to react? What’s going to flare (that’s how I describe ‘when shit hits the fan’)? How long will the transit take from X to Z location? Once I arrive at Z location, will I need to leave at any point? How much energy do I have to use when I get there?”
Everything is a fucking calculation because there’s a bug in my database. I try to predict what I need to function. But there’s no pattern in my code anymore. Everything is unknown.
Stand up every 45 minutes to reduce pain level by 5%. Walk at least 4000 steps to reduce pain level by 10%. Rest after 20 minutes of walking. Be in bed for at least 9 hours to function at ~25% the next day.
Recharge. Rest. Self care.
While running basic errands, it hits me like a ton of bricks that turn to beads of sweat, and then I’m overheating; so hard I have to “take a break,” because buying more than just toilet paper at Target is too fucking hard.
I can’t even eat without experiencing symptoms. I eat something; it sends me running to the bathroom. There isn’t an aspect of living that Fibromyalgia or the slew of co-existing conditions do not touch. You name it; there is an ill effect to go along with it.
Having a chronic illness really does take its toll on you. Fibromyalgia holds the power to destroy lives while lurking in the shadows. It masquerades as other diseases, so I’m put through a gamut of tests. It turns my friends and family into skeptics. It makes people think (and makes me feel) like I’m a liar, faker, and lazy. It tries to take my job, my relationships, my love and passion for life.
I have to fight every day to open my eyes and take that single step out of bed. There are many mornings when I wake up too sore and too tired to attempt what I know will be helpful for myself. As soon as I’m awake the emotions easily settle in. First, there is the guilt. The guilt for being sick, for feeling down. Then, there is the shame, because what type of person can’t pull it together enough to just get out of bed? It’s hard to explain that I probably spend 80% of my energy just trying to appear “normal.”
It is humanly impossible to explain living with pain and fatigue to someone who does not have it. I’ve resigned to just saying, “I don’t feel good, thanks for asking,” instead of trying to explain one of the myriad of ills I’m feeling at the moment.
My elevator speech usually goes a little something like this, “I have a central nervous system disorder that causes widespread chronic pain and fatigue.” I try to make it sound bad, because it is bad.