I am 38, and I have atypical fibromyalgia. By “atypical,” I’m pretty sure the doctors mean “severe in a way that’s messed up on top of messed up and we don’t know why.” It’s been 8 years and 12 days since the initial onset. I remember this because I was supposed to be at the wedding of two friends that weekend. Instead, I woke up that Saturday morning unable to move. A hospital stay and years of testing followed. But every year I see their Facebook update celebrating their anniversary and even though it sucks that we missed their wedding, and it sucks more that we share such an important date in our lives in polar opposite ways, it makes me happy to see their celebration. Just when it hits that I’m at this craptastic milestone for an event that has shaped my life so completely, it also hits that people I love joined their lives together on this date, committing themselves to each other in the eyes of their friends and family, in joy and love. And I’m still here to bear witness to that.
It’s a good reminder.
Fibromyalgia is ever present, but it is also cyclical in nature, especially when paired with anxiety and depression, as it often is. Fall is a rough time for me. I don’t know why. Maybe it’s the changing of the season. Maybe it’s the colder weather. Maybe it’s my own internal chemistry, following its own unique tide. A pattern of ebb and flow that I haven’t been able to chart or navigate. I simply hold on for the ride.
In theory, I love this time of year. The brilliant blaze of leaves and the cold snap in the air, that certain smell right before the snow. The wood smoke that carries on the wind from the neighbor’s houses as they fire up their wood stoves for the first time. The smell when ours joins them. All the parties and festivals. Halloween. I adore Halloween.
In reality, I want to hibernate. My body starts to rebel and I can feel it coming on. My mood gets lower, my muscles stiffen, and pain flares. I’m exhausted all the time. I start to have panic attacks when I try to go to sleep. I throw up a lot.
8 years and 12 days ago, a ticking time bomb went off in my brain. If you had asked me before it happened if I felt anything coming on, I would have said no. If you had asked me afterward if I could look back and see signs that it was about to hit, I still would have said no. This was me, two days before I got sick. We took our girls on a ride on the Essex Steam Train, and then took the ferry over to Gillette’s Castle for a hike. My older daughter, Qualia, was two and a half years old. My husband took this picture of us while juggling the camera and our 15-month-old toddler, Bella.
I had no idea it was coming, and I’m glad. I’m glad we had a family day together, out adventuring in grand toddler style, unfettered by the anticipation of what was to come. Two days later, I was in the hospital, undergoing tests to determine if I would be able to keep breathing on my own, while my husband was torn between taking care of our children and being by my side. Because it was flu season and the girls were young, they weren’t encouraged to be at the hospital. I was still nursing both girls, and they missed their mom. It was rough and it was scary. I was desperately afraid that I wouldn’t get to go home to them, that I would have to leave my husband and babies.
8 years and 12 days later, we’re still doing tests. We’re still trying to figure out my symptoms and the progress of this syndrome. I go in tomorrow to look at my fertility, and the possibility that closing up shop on my uterus and ovaries and sending my hormones into a dramatically different pattern might help. It’s all theory and conjecture, but when you have an atypical case of something that isn’t well understood yet in the typical, that’s what you go with. I look back at the last eight years, and I see the cycles and flares, the pain, the invasive tests and exploratory surgery, and it starts to weigh me down. And then I look at my friends’ wedding photos, and the pictures of their beautiful little boy. I look at pictures of my girls growing up, great big smiles and goofy jokes, birthday cakes, friends over, picnics and playdates. I see my husband by my side in memory after memory. In love and joy, in sickness and in health. I have this one craptastic milestone every year. And I have day after day of being with my family.
Screw you, fibromyalgia. I win.