Fibromyalgia – Riin Gill

I give up

I can’t do this anymore. I’m exhausted all the time. I’m in pain all the time. I’m lucky when it’s only mild pain. More often it’s severe pain. I’m sometimes happy, but I always return to being depressed. But what’s really doing me in is my increasing inability to concentrate. I just can’t do it.

I’ve known for years that I had depression, anxiety, migraine, asthma, and anemia. When I was diagnosed last year with fibromyalgia, it made perfect sense. I’m pretty sure I’ve had it since childhood.

But I’ve realized in the last few years that I’m also autistic and have ADHD.

When I was a kid, they didn’t think girls could even be autistic or have ADHD. (Yeah, that’s what happens when you list only the symptoms of boys who have it and say “these are the criteria.” Kind of like when they write cardiology textbooks and only describe heart attacks in men, and then a woman goes to the hospital having a heart attack and they say, “You’re not having the textbook symptoms of a heart attack, therefore you’re not having one. Go home,” and she goes home and she dies.)

I’m realizing now how much autism and ADHD have affected my inability to make a living. I have tried. I have really, really tried. But there are so many things one needs to do to make a business really work that my brain just cannot do.

And getting a job somewhere is just something I don’t have the energy to do anymore. I get really tired. And executive dysfunction and inability to concentrate are big problems in pretty much any job.

I’m in the beginning stages of applying for disability.

I am not going to be making jewelry anymore. I just can’t do it anymore. I started selling off some of my beads in another etsy shop I opened a few weeks ago, TreetownBeads.etsy.com (yeah, I forgot to tell you about that. Told you my brain wasn’t working). I’ve been adding things pretty slowly (because I have no energy), so let me know if there’s something you’re looking for.

I took down the listings for custom spinning. Realistically, I am not going to have the energy to deal with carding someone’s fiber, so yeah…no. And I am not going to take any custom orders for jewelry. I still have a few pieces of jewelry that came back from a gallery that I haven’t had the energy to photograph and list yet (are you seeing a pattern here?), but I will not be making any new pieces. If you want to buy any of my jewelry, ever, well, it’s now or never.

I still have a ton of my mom’s jewelry to list. I think I’m going to start putting some things up in lots rather than individual items. When I have the energy.

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.

Slowly I get things done

I added five new pairs of earrings to the shop last week. Like a turtle wading through molasses, I’m finally showing them to you now. [I finally got a diagnosis for my exhaustion and pain. I have fibromyalgia. I’m not happy to have it, but I’m glad to finally have a diagnosis. I’ll be writing more about that in a later post. As you might imagine, I have a lot to say about it.]

But for now, earrings. All images link to their respective listings in the shop.