It’s been awhile since I’ve made a probably-overly-personal post about fibromyalgia. Let’s do this.

I’m having a bad day. It’s one of those days where I woke up after 12 hours of sleep, laid in bed for another hour, took a bath, made an agonizingly exhausting trip to get lunch, and then have been in bed ever since. I hate days like this.

I am lucky in many ways in my life. I have many things that I am incredibly grateful for. I have loved ones who take care of me. Even my being sick pales in comparison to a lot of other people, even other people with fibromyalgia, who are debilitated on a daily basis. So it’s easy to keep quiet, and to perceive myself as whining when so many other people have it worse than me, and still manage to push harder than me and do more than me.

But it gets hard and I should be honest about it. I hate having a day slip away from me with nothing to show for it. My friends are encouraging. “Think about taking care of yourself as a task. It’s work, it counts. Put it at the top of your to-do list to rest for a day and cross it off.”

This is a good way of thinking about it but one I’ve always struggled to accept. I’ve been thoughtful about this today. I think the reason is that I feel like an intentional rest day should feel…well…restful. In my mind that would be a pleasant day, feeling good and chilling all day. Maybe playing games, maybe relaxing someplace nice. But these days are not like that. These days hurt, and I can’t move much without being completely fatigued, and the sun has set and I’m so frustrated. It just feels like a waste – I don’t feel like I rested, I just feel like I wasted a day experiencing something terrible.

Awhile ago I discovered some old photos of me from high school and college, in which I recall being utterly exhausted. It was funny to me because looking at them, I didn’t look how I remember feeling at the time. I was intrigued. It also reminded me of how long this has been a part of my life.

So I started taking “exhaustion selfies” on hard days. I’m not quite sure why, exactly, I just felt compelled to. Maybe to see if I looked how I felt. Generally I don’t. I look a lot better than I feel. 

I read somewhere that people who suffer from chronic illness get accused of faking being sick when we are, in fact, faking being well. On bad days it can be good to grasp at silver linings. I say things like “at least this is making me aware of being alive,” or “at least this gives me a different perspective on life.”  These aren’t things I say because I believe them, but things I say to try and will the ideas into reality. Like magic words.

Anyway, today’s silver lining is that I like the way I look. I’ve always liked the way I’ve looked. I’ve never suffered from the thing where someone wishes this one physical part of them was different, or hated any part of my body. It’s not perfect, it’s a little scraggly, a little round, but I love these things about it. In spite of my anger over how my body operates on the inside, I am pleased with how it looks on the outside. This is probably a thing worth feeling good about.

I’ve had a lot of insights this summer about trying to be an independent developer in the face of external obstacles (or internal obstacles, I guess). Maybe I’ll formulate them into something worth sharing at some point, when I have the energy to spare.

Before sharing this, I asked Jakub if he thought it felt too personal. He pointed out that I barely scratched the surface about what these days are like. Always holding back being completely honest, I guess.