The F word

So. A few days ago I was diagnosed with fibromyalgia.

I figured it was probably either that or chronic fatigue syndrome, so I wasn’t surprised.

I had assumed it started after I was sick for six months in 2005. I was utterly exhausted, and they never did figure out what was wrong with me. After that, I had periods where I felt ok, and then periods where I was exhausted. The periods of exhaustion have been lasting longer and longer with much shorter periods of feeling ok in between.

I’ve spent the last few days learning more about fibromyalgia (this is a video of one of Dan Clauw’s lectures from last year). Watching it made me realize I’ve probably had fibromyalgia my whole life, or at least since I was a small child, and all of my other chronic conditions are actually symptoms of it. Different manifestations.

Later it dawned on me that when I was sick in 2005, that was probably actually a six month long flare.

This is all sort of making my head swirl. Ok, I really only have one chronic condition, not nine. That’s a major change. That’s good.

On the other hand, it’s a really major chronic condition that affects everything. That’s bad.

It explains a lot. It explains why I’ve never had much energy. It explains why¬† there’s pretty much always some part of my body that hurts. There always has been. When I was a kid I had sore throats and earaches all the time, then aching knees, then headaches, then backaches. It just went on and on.

Right now my entire back is killing me. My left arm is screaming. My shoulders ache. My neck is very unhappy. This has been my normal for the last several months.

It explains why I have never in my entire life woken up and felt rested. Ever. No matter how much sleep I got.

I can’t help but wonder how my life would have different, could have been different, if I had been diagnosed decades ago?

But not much has been understood about fibromyalgia until very recently. Many doctors didn’t even consider it real until very recently. So I really couldn’t have been diagnosed decades ago.

But you know? I still wonder. Because for decades I’ve been wondering, why can’t I just work harder, why can’t I just get my shit together, and earn an actual living like other people? Why do I have to be so fucking tired all the time? Why am I so fucking lazy? Why I am suck a slacker? What is fucking wrong with me?!

Oh.

Fibromyalgia is wrong with me. It’s not me being a lazy slacker who can’t get her shit together. It’s me trying the hardest I can and wearing myself out because I just don’t have any more in me.

So yeah. I can’t help but wonder how my entire life would have been different if this had been diagnosed and treated decades ago.

I’m grieving the past I never had.

It’s a process.

In a few days I’ll start to process the idea of a present and of a future. Right now that’s too much to wrap my head around.

I started a Patreon – what that means

If you’ve been following me for any length of time, you know that I have several invisible disabilities, most of them intermittent. Unfortunately they’re getting worse, and some of them aren’t so intermittent anymore.

I’d really like to keep working (I still have so many ideas!), but between the pain and the lack of energy, well, work isn’t happening so much. It’s not just the making. It’s the photography, the marketing, the shipping, the bookkeeping. It all takes energy. And without all of it, a business doesn’t work. And if the business doesn’t work, I don’t make enough money to live.

I’m in the beginning stages of applying for disability. And I started a Patreon.

If you’re not familiar with Patreon, it’s a place where creators (like me) can set up a site and patrons (like you) can subscribe to a membership community. Depending on the level you subscribe at, you get access to posts I write that I don’t post anywhere else, the haiku I compose about insomnia and pain, free knitting patterns, discounts on my jewelry and handspun yarn, access to a private Facebook group, and a pair of handmade earrings each month.

If you’d like to subscribe and become part of my community (for as little as $1 a month!), it would mean the world to me! Become a Patron today!

Thank you!

Become a Patron