Feeling bad, feeling better, and making it work with illness
“Have you ever felt pain in literally all of your joints at once?” I asked W. last night.
“No,” he said. “No, I never have.”
“Oh. That’s how I feel right now,” I told him.
On fibro pain days, the pain is most noticeable in my fingers and toes. (On thyroid/autoimmune pain days, it’s in my knees and ankles.) There are 30 joints in each of my feet. There are 27 in each of my hands. (If you have more or fewer than 10 fingers or toes, you have a different number of joints.) I can feel each one a little bit as I move. As I type. As I walk. As I wiggle my toes. The pain isn’t intense, but it is pretty much constant. It disrupts my day.
I often don’t tell people how I’m feeling, physically, because I’ve gotten to the point where it’s a baseline of not great (but, like, kind of okay? tolerable, we’ll say) and I just assume they’re tired of hearing me enumerate the ways I feel not good. But I thought it might be useful to get specific, today.
So today, yes. I feel all the joints in my fingers and toes creaking. My knees, elbows, shoulders, same thing to a lesser extent. I can feel all of my cervical vertebrae stacking on top of each other. I have a headache mostly concentrated over my left eye. It’s like a migraine, but I think it might not be a migraine. All of this is, I believe, because my muscles just sit in a constant state of tension, without my having much control over it.
Please don’t suggest your favorite remedy: I have a plan of action and am working on it. My doctor gave me some advice and I’m working through The FibroManual: A Complete Fibromyalgia Treatment Guide for You-and Your Doctor (affiliate link).
In other news and kind of related, I got some really good work done on my dissertation yesterday, tackling a problem that I’ve been struggling with for about two months. I think a couple of shifts in my working process are responsible for this:
I’ve given myself permission to work in bed. All the sleep hygiene people will tell you that you should only use your bed for sleeping and sex. That’s all well and good, but I think that advice is for people who aren’t dealing with chronic pain. Esmé Weijun Wang has a bed in her home office, which is brilliant, but I’m not about to buy an extra bed. (The home office doesn’t have room for it anyway.) Leonie Dawson was put on bedrest because of hypermobility problems and stayed productive in bed:
I did some reading of journal articles in bed the other day and it was brilliant.
I’m doing my thinking in a different space than I do my research and writing. I’ve been thinking while lying on a hammock, looking up at green leaves and blue sky. If you can get into nature for your thinking, I highly recommend it. But even if it’s just that you move from one chair to a different chair, I think that might work. Having my laptop in front of me, I feel like I need to be producing. But thinking time requires a different mindset. Lying on the hammock was more productive than many of the hours in front of my computer have been.
Next steps: So my next step is to embrace this mindset. I’m going to keep a backrest pillow and a lapdesk under my bed. At the end of my work time, I’m going to shut down my laptop, put it in my backpack, and carry it up to my bedroom so that if I’m struck with inspiration at 3 in the morning I don’t have to go downstairs to get to work. I asked for The Book Seat and got it for my birthday, so even when my arms are weak or achey, I can read.
I’m feeling really optimistic about the effect this set up will have on my productivity. We’ll see.
