Crafting with Chronic Illness: How Fibromyalgia & HNPP Became Part of My Story

It’s been a little while since our last blog post — life got busy, my body got tired, and here we are. Today, I wanted to share something a little personal. At the end of 2024, I was officially diagnosed with fibromyalgia — my symptoms really started showing up in April of 2024 — and more recently, Hereditary Neuropathy with Pressure Palsies (HNPP). It’s a mouthful, I know — sounds like something you’d need a wizard or a spell book for. But these diagnoses have finally given me answers for things I’ve lived with my entire life.

Fibromyalgia makes me incredibly tired. My joints ache constantly, and sometimes simple tasks like sewing, cutting fabric, or even just holding a pen feel like running a marathon — except nobody hands you a medal, just an ice pack. And with HNPP, I’ve finally learned why I’ve experienced chronic numbness in my hands and feet for as long as I can remember.

HNPP is actually a genetic condition. It’s passed down through families in what’s called autosomal dominant inheritance — which basically means you only need one copy of the altered gene from one parent to end up with the condition. The wild part is, we have no idea which side of my family it came from. Our family has always been creative, handy, and constantly busy with their hands — and they never really showed signs of slowing down, so it might’ve just gone unnoticed or chalked up to “getting older” or “working too hard.” Either way, it’s part of my story now.

Getting that HNPP diagnosis was actually a huge relief. For most of my life, I’ve dealt with my fingers and toes going numb for months at a time — especially when doing things like push-ups, using scissors, or really anything that puts pressure on my nerves. And I honestly thought it was normal for your finger to go numb for 3 months. Turns out… it’s not.

And it wasn’t just my fingers and toes — for the last 20-some years, I’ve randomly had spots on my body go numb for months at a time. That was the scary part, because it mimicked symptoms of other chronic illnesses, and no one could ever quite explain it. But having a name for it, and understanding why it happens, has made such a difference. It doesn’t make the symptoms go away, but it helps knowing it’s real, it has a reason, and it’s something I can manage and work around.

For example — tonight, I was cutting out a bunch of fabric for a new set of bookmarks (which I’m so excited about!) and just like clockwork, my fingers went numb. But here’s the thing — it’s not just a few minutes or hours of numbness. My numbness lasts for months. Yep — months. I’ve been this way since I was a kid, and now I finally know why. And you better believe I’ll still be over here cutting out bookmarks with my half-feeling fingers, because apparently, I’m stubborn like that. 😜

Even though these conditions can be frustrating (and frankly, a bit rude), they don’t get to steal the things I love from me. Stitch & Timber Co. was built around our love for creating things by hand — and while some days are harder than others, I refuse to let chronic illness be the reason I stop doing what makes me happy.

And it’s not just me navigating challenges. Mike (AKA Timber) recently had rotator cuff surgery, which, while totally different from what I’m dealing with, comes with its own frustrations and limitations. He’s been taking it easy while recovering, but he’s still carving out time to work on his craft and create a few new pieces when he’s able — and really, with his other hand. He’s a little ambidextrous (lucky him!). It’s just another reminder that we all face seasons where our bodies slow us down, but that doesn’t mean we have to lose the joy in the things we love. Sometimes it just means adjusting how, when, or how much we do them — or learning to pick things up with the other hand.

I wanted to share this because maybe you’re someone (or know someone) living with chronic pain, fatigue, or an invisible illness. Maybe you’ve had to give up things you once loved because your body wouldn’t cooperate. I get it. We both do.

And moving forward, I’ll also be sharing tips, tricks, and little adjustments that help me keep working with HNPP and fibromyalgia. From hand tools that reduce strain, to workspace setup ideas, to learning when to stop and binge a show guilt-free because your body says so — my hope is that these little things might help others hold onto the things they love doing too.

Your illness, your injury — they don’t define your creativity. And while they might boss you around some days, they definitely don’t get to take your joy.

We’ll both be sharing more about how we adjust our work around our health in hopes it might help others find ways to keep creating too. If you’re navigating something similar, we’d love to connect and hear your story.

Thanks for sticking with us on this journey — and stay tuned for those bookmarks, a few new Timber creations, and plenty of helpful (and hopefully slightly humorous) ideas to come. Numb hands and healing shoulders won’t stop us.

❤️ Megan