Unless you live with a chronic disease, it’s hard to imagine what life could be like. People accuse me of being miserable because I want to be. It’s hard to explain to them that sometimes, everyday things make me feel like I have flu. Two weekends ago, I went to the campground. I woke up Saturday morning with pain in places I don’t normally have pain. I spent the day struggling to catch up with the pain and failed miserably for 5 days. I was a week out from my refill of pain meds and then I was out… for 6 days because the flare was that bad. So the following weekend, there was a dart tournament in town. J had to work but asked if I wanted to go out after he got off. I told him quite firmly no.
Because even if all I do is go and sit in the dart hall for a couple of hours, my flare is going to come back. My life is all about finding a comfortable place to lie down or to sit depending on what I’m doing. I can’t stand very long. Even when I have pain meds, standing or sitting in an uncomfortable chair can cause pain flares that are out of control for days.
Perhaps the hardest part of a pain flare to explain isn’t just that it hurts even more, but how I physically feel. It’s like having flu. My head hurts. My body is exhausted. My brain gets stuck. Even eating is brutal. It hurts to cook, it hurts to eat, it makes me feel sick to my stomach, and it just isn’t worth it to consume food. Thankfully, my mom who has fibromyalgia does understand and will take over the cooking duties for me when this happens.
Most of the time, my pain is a 50 on a scale of 10. And it’s located in my right hip. It feels like it’s been broken, stabbed with a sword, and run over all at the same time. But when a flare hits, I often have pain in the knee on that side. I try not to limp because limping makes it worse. I can also have it in my ankle, my back, my buttock, and radiating into my torso above my waist.
The only thing I can say about this is that at least on normal days, my pain is localized. When it flares and radiates, I want to start hacking myself to pieces.
Here’s the worst part, I know a flare means that I’m going to have to go without pain meds for a few days, because I’m going to overuse them for a day or two or five to try to get my body back to some kind of normal. I remind myself of this every time I take a pill. But when you are in that much pain, it’s hard to imagine or care about the future.
But I have to make these trade offs every day. Can I handle going grocery shopping or is today’s pain level high enough that a shopping trip might trigger a flare? Is it high enough that doing laundry might cause a flare? Is 70 degrees warm enough today for me to go outside without a chill causing a flare? When I watch TV tonight, do I need to build a fortress of blankets and pillows so Kelly can’t jump in my lap and cause a flare? If I throw a Frisbee for Lola and she returns it but refuses to let go, will I suffer a flare if I tug on it?
Every day, this question rises up, and I have to make decisions based on the possibility of causing a flare.