I can’t remember the last time I felt normal. The moment, so long ago that I hold it with the same nostalgia that one holds their Christmases of childhood or their College years. I have Fibromyalgia. It’s a chronic disease that causes widespread pain, extreme fatigue, stomach issues, and brain dysfunction.
The first time I knew something was wrong with me, the first time my disease scared me was on the way to my children’s school. It was a route I traveled every day but on this particular day, I didn’t know it. I made a wrong turn somewhere along the way, a right instead of left and I was unsure of my surroundings. I couldn’t figure out where I was or how to get back. My daughter eventually helped us out, and we found our way to school, but that event forced me to see a doctor.
I went through a battery of tests. I was poked and radiated with various imaging machines. They through around diagnoses like Cancer, Lyme Disease, Lupus, and Multiple Sclerosis. Until finally they sat me down in a room and told me I had Fibromyalgia like I was supposed to be relieved. “It’s only Fibromyalgia.” I was supposed to be relieved. It wasn’t Cancer, but it was no less insidious.
When I think about it now, I felt awful for years. It started slowly. I would get up in the morning and feel like I’d never slept, my back and legs hurting. I blamed it on a bad mattress, poor diet, and finally old age. But I was barely in my thirties at the time; surely old age hadn’t come for me so soon. I felt like a ninety-year-old living in a thirty-year-old’s body. I was no longer able to make it through the day, between the constant pain and the fatigue, I was ready to give up.
I took the pills, changed my diet, tried vitamins, and exercised more. Each thing I tried eased one symptom only to draw another to the surface. I felt like I was in a never-ending war with my body. For three years, I fought valiantly until finally, I had to give up. I had to come to terms with the fact that there’s nothing I can do that will make it go away. This is my life now, I am a chronically ill person, and I have to find a way to live as a chronically ill person, whose illness makes them disabled.
But I don’t feel disabled. I feel encumbered by my disease. Even while I know that the definition of a disability, a condition that limits a person’s movements, sense, or activities, is everything I experience. But my assumption of what disability looks like does not fit my life, and yet it does. I know that on my bad days, weeks, months, I’m barely able to walk. Simple things like going to get groceries zap all my reserve energy for the day and render me useless to even undress for bed. There are days where I wake up, and I don’t know who I am, or who my husband is, and I just have to wait for my brain to reboot itself. I lose track of things, my surroundings, and words. Having a simple conversation about what I did today becomes a herculean task. I lose track of the conversation, can’t find the right word and simply give up.
During these flare-ups, I tend to hide away. It’s embarrassing for me to get lost in conversation or slur my speech constantly. When my symptoms get worse, I don’t talk to anyone, not even my husband. I try not to walk around, so no one sees me stumble. I don’t go out because usually, my skin is so sensitive, I can’t wear clothes. It’s for this reason I have so many robes; it gives me the illusion of not being the complete slob that I so often feel.
Hiding away is easier than to have to constantly explain to others that I have this illness and this is what it does to me. Most people don’t even believe that it’s a real illness anyway and yet it affects 12 million people, ninety percent of them being female. I am one voice out of 12 million that knows that it’s real. I live with the depression it causes. My brain tells me that I’m a burden to my family and I’m better off alone, to suffer in silence. When that’s precisely the moment that I need people the most. I need the hug that hurts or to be told that “It’s going to be alright,” even when I know that it won’t.
I know that my condition will never go away. I grieve for the person I once was, the person I will never be again. I know that as I have gotten older the flare-ups, their severity, and their duration have gotten stronger and longer and that worries me. I wonder if there will come a day where I will wish I had the body I have right now, partially broken, barely sustaining me. I live the old cliché of taking things one day at a time because I don’t have a choice.
I hope the future holds a cure. Until that day comes, I live my life between the flares, inside those golden moments where I can experience life just for a little while like it once was. I never take those days for granted; they are few and far between.