Fibromyalgia is a condition characterized by chronic pain and fatigue. It isn’t the same thing as Chronic Fatigue Syndrome (or “CFS”), although there are many overlapping symptoms. For many people with this disorder, diagnosis comes after a long period of testing for other things, many of those pretty terrifying. Lupus, Lyme Disease, Crohn’s Disease, Multiple Sclerosis, even cancer.
By the time I heard, “It’s fibromyalgia,” I felt relief. I’m not dying! And then after a few days it sets in: the realization that there is no cure, no treatment. No, I’m not dying, and that is a lot to be thankful for. But feeling like I’m 80 years old when I’m only 37? And knowing it will never get any better, and will likely get worse? And that not only is there no cure and that this condition seems to boggle the mind of researchers, but that a lot of doctors still think it’s all in your head? It will not surprise you to learn that the most common concurrent conditions with fibromyalgia are depression and anxiety.
I’ve been in a flare-up since Sunday. A “flare” is when the symptoms ratchet up in strength and intensity, and it’s extremely stressful. Every obligation in your life is now on hold while you wait for your body to stop flaring. Our family had three weeks of non-stop activity, birthdays, camps, and visitors, and it was all awesome, but just….exhausting. I knew I was losing spoons at a dangerous rate, but I didn’t realize how badly until I went to work on Monday. I was dizzy in the car on the way over, and in huge amounts of pain while I was there, which isn’t normal. By the time I got home, I could feel it, the heaviness, the pain, setting in, deep into my muscles. My eyes felt hot, another big sign of a flare-up for me. Headache. Brain fog, lack of focus. Yep. Here we go.
I have a very understanding workplace, and I’ve been home since Tuesday, trying to get better. Normal people can borrow their energy from the next couple of days, and make it up through extra sleep and daily rest. Fibro folks can’t do that. Our rate of energy replenishment is astonishingly low. It’s like watching a turtle cross a desert. Movement is slow, and there is no end in sight for miles around. On Wednesday I drove ten blocks to the library to return my books and pay off my rapidly-accruing fines, and just that one trip was enough to send me back to bed for half a day.
For me, the hardest thing about a fibro flare-up, is that I don’t feel productive. I have to rest my body, even while my mind wants to be active. I’m dizzy a lot, so I try not to drive, and I’m exhausted, and in large amounts of pain, so I usually have to stay home and just hang out around the house. My pain has this unnerving characteristic of spiking in intensity when I’m either too active or too still, so during a flare-up there is this maddening dance of trying to find just the right amount of activity to keep myself in the zone of least pain, while not overdoing it and still letting myself rest.
This is where the spinning wheel becomes a magical thing. I sit at the wheel, and I begin to treadle – that means my two feet are moving on wide flat pedals that spin the wheel – but the movement is so gentle that there is no pain. However, there is movement. Soft, but meaningful, movement.
I hold the roving, I sit up straight, and I gently let the wool twist and wind onto the bobbin. The whole time, my body is moving, but gently. No twisting, no lifting, no bearing weight, but still; movement. I’m often in pain while I’m at the wheel, but it’s the same pain I have anyway. Nothing about spinning makes the pain any worse.
Spinning has a profound effect on my well-being. I can sit at the wheel for fifteen minutes to maybe half an hour if I’m really feeling strong, and when I’m done, I have yarn. I realize that for people who aren’t fiber freaks or weavers or knitters (you know, you normal people), this may not seem that exciting. I would not be too impressed by someone telling me, “Hey you know if you sit here and move this pole up and down, in a couple hours you’ll have the most incredible thing! Butter!!”
“Yeah. That’s…..uh……great. Good for you.”
But I am a knitter and a fiber freak, so what the spinning wheel gives me is the ability to, even through pain, feel like I’ve done something with my time that’s meaningful to me. Like playing an instrument, no amount of practice time is a waste. Every minute I spend at the wheel I’m learning how better to do this craft that I love so much. And at the end of the day, I have fiber! I can knit what I spin and make beautiful things.
In addition to feeling productive, sitting at the wheel teaches the relaxation response. A spinning wheel is truly a bio-feedback machine. If you’re hunched over, stiff, if you’re not breathing well, if you’re contracted and distracted, the yarn coming out of your hands will show it, right there, every second. It will be clumpy, it will fall apart, it will shift rapidly from thick to thin – and not in that pretty way. The minute that you sit up, take a breath, glance out the window, and try to relax, that’s when it all comes together, and what comes out of your hands is uniform and beautiful.
Last night I plyed a bunch of yarn (that’s when you spin two single strands of yarn together), and wound a bunch into balls, and at the end of the day, as I turned off my office light and went to bed, sitting on my work table I had this visible, tangible thing that I’d created. Something that was colorful, true art therapy, sitting there, that came out of my hands. Even though I’d spent the day in pain, I was still able to do this beautiful thing. Every day that I’ve owned my wheel, I’ve thanked my husband for getting it for me. I’m sure eventually I’ll stop the daily thanks, but today will not be that day.