Written the the first week of my diagnosis. TW: internalised ableism
The title suggests that I speak with knowledge and authority about how to avoid crashing and burning. Let me assure you that this is not the case.
Yesterday, I did 10 minutes of the workout app that my sisters use to keep fit, and that was cool. I did a whole ton of writing and work. I went for a thirty minute walk. I went for a short trip to the doctor. I was pretty okay at the end of the day. I fell asleep around one, which was a little late, but overall, no big deal.
Yeah, I thought. A new treatment for a new diagnosis, a new lease of life. Back to normal (or what passes for normal.) I went to sleep, happy in the knowledge that I could have a semblance of a productive day.
I woke this morning in such tremendous pain that I wondered had I forgotten my Lyrica (I hadn’t). I was overwhelmed with fibro fog (which feels not unlike a bad hangover when you get it first thing in the morning) and nausea. I turned on my computer, but the words wouldn’t come. I turned on Netflix, but had to continuously pause it so I could run to the bathroom to get sick. I lay on top of my bed for a while until the feeling like I wanted to die passed.
It did pass about an hour ago, and I played a little guitar, and briefly Skyped the American, before having enough control over my thoughts to ramble on my own blog (but not to complete writing that I am paid to do.)
Fibromyalgia, it appears, is a lesson. Balance, everyone says. It’s all about finding the balance. But how do you find the balance when your choices are total exhaustion or total lack of productivity? I am afraid to do anything that might steal what little energy I have, but if I don’t push I will never adjust. If I have to stay in the house all the time to avoid constantly feeling like I’m going to vomit, how am I supposed to do anything in life?
Spoon Theory would suggest that I need to become more aware of how I am using my energy, and making the hard choices of what activities are most important. This is a good principle. It is just very disheartening when you remember that standing up for a whole shower took at least two spoons that you could have used on preparing for the giant big-deal debating competition that’s coming up in two weeks.
The unpredictability is terrifying. The need to cancel plans mere hours before they happen is terrifying. The thought of being out of the country for ten days without family members or spoon-savvy friends is terrifying. And I don’t want to live my life in fear, but I also don’t want to spend in bed suffering from the aftermath of my antics.
I feel bad for not being able to do things. I feel guilty for not having the energy to get a part time job and help pay my way. I hate that I am complaining when it could be so much worse. I hate that I want to cry a lot, but instead of crying my brain decides it is more productive to call me fat and check the calories of what I am eating.
But I also hate that I am rife with this internalised ableism. I hate that people seem to consider fibro an inconvenience that plagues multitudes, in the manner of IBS. I hate that everyone is telling me that diet and exercise is the answer. I hate that I want to rebuff everyone’s reassurances that it will be fine.
Because it might not. In all likelihood, I might not be able to become the person I want to be. And I will do something else, and that will be okay, and it will work itself out one way or another. But I need to space to grieve that girl. That girl who was going to change the world, taking names, and never shutting up about human rights. Whether she ever could have become anything is beside the point.
Things are different now and I feel like I cannot process and be upset and deal with the fact that I have a chronic illness, because everyone is trying to reassure me and tell me it’s not so bad. But it is so bad. Right now, it is. Right now it feels like the world is ending. I know it’s an overreaction but I feel like crap. And soon, I won’t. It won’t be so bad, and it might even be good again. But my blog is the one place where there is precious little need to put on the calm, professional, emotionless face that I use to deal with the world.
So here. Emotions. frshukfdshiosd;uiofrsdhikjfsdxkljhdfikjdhsxcuoi;weumzrg€frj.gvdegopg:JOv\zdfd\shl frdknvflfsouuio.