I didn’t even know there was such a thing.

You know that awfulness you feel when you have the flu? The exhaustion. The all over hurtiness. That’s what I feel like everyday, even on good days. I know exactly how much time I’ve spent in the last few years not feeling pain. It was 2 hours I spent in a hot springs pool. Imagine that, counting in minutes or a few scant hours when your body feels almost normal.

I dream of being a head in a jar. Or having a cyborg body.

Fibro is this stupid disease where your brain interprets any work done by your body or pressure put on your body as pain. There are a gazillion theories. It’s autoimmune! It’s neurological! And you get to play the illness roulette. Is it MS? Is it lupus? Is it some flavor of arthritis? Chronic fatigue? You won’t know unless something definitive happens. In the mean time- it’s fibro.

A few months ago I was at a party and this woman was telling a story about how her dad is one of those guys who just won’t let go of a joke. She illustrated by poking me, repeatedly, in the arm while saying “did you get it”. For someone without fibro, this would be annoying. But for me, that stupid round of arm-poking meant 3-4 days of pain. And I knew that’s what would happen, but I felt frozen and unable to say “stop” because I didn’t want to talk about this stupid disease and explain that her actions were doing me real, actual harm.

Sometimes I wonder if part of the reason for the exhaustion is the amount of self-control I need to go out in the world and not show pain. I make it to the bus stop most nights on willpower alone, ordering my legs to move and grimacing with every step. Then there are the nights that I just can’t make the 2 block walk. Those nights are getting more frequent.

Blood pressure cuffs and those stupid rubber tourniquets they use to draw blood make me cry. I wear braces at work so that I can keep typing even when my hands are screaming at me. I have a deep and meaningful relationship with shoe insoles. They are the only thing that makes wearing shoes and walking possible for me. Every single step I take every single day is pain. The insoles cushion the blow a little.

I get tired just taking my bra off, and it’s the kind of tired where you don’t know if you can make it the 3 steps to the bed. I am pretty sure that someday soon I will be out somewhere and my body will hit the exhaustion/pain wall and I will fall down in the street and not be able to get up. 

I take a fist full of pills twice a day. Pills for pain caused by nervous system issues. Muscle relaxers. Pills to combat the horrid insomnia which may or may not cause fibro. Supplements like potassium and vitamin D that are supposed to help. I see an acupuncturist/naturopath once a week.  With extremely good health insurance, I still spend several hundred dollars a month out of pocket. And I am in this horrid loop where I have to work so I have healthcare/money to spend on treatments, so that I can make myself functional enough to work. But that’s as good as it’s ever going to get, functional enough so that I can work and not much else.