I had my first fibro fight today with my partner Terry. Today he is out and about on his own because there’s a heat advisory this afternoon, I melt in the sun, and I wanted to get in the garden this morning while I could. He said that was fine with him. But when I said to tell the people he would be seeing (outside in the heat and sun) I would see them next time, he very blithely said, “It’s okay I just blame it on your fibro.”

We were in the kitchen and I bought a new knife set yesterday. Just by way of background.

My response was, “No. You never do that. You never blame anything on my fibro. If I’m having a fibro related problem, it is up to me to communicate that. You never blame anything on my fibro ever.” He looked at me like I was crazy and said, “Well–” At which point I said, “No, you never do that. You don’t understand, and don’t look at me like I’m crazy because you don’t understand.” He knew better at that point than to say “Well” again, because he knew he wouldn’t get farther than that.

And that was the fight. No knives involved. Yet. The thing is, when he says something like that, I learn a couple things. First, that he talks to people about my fibromyalgia. This indicates to me that he is frustrated by the effects I experience (less energy, lower sex drive, crankiness). It also indicates to me that he is more affected by my fibro than I think he is. It also indicates that he has no boundaries, which I already knew, but that’s not a fibro issue, but he doesn’t understand that fibro is personal. People don’t know I have fibro unless I release that information to them. Secondly, and more importantly, a statement like that indicates a huge lack of understanding about how I want to and generally do deal with my fibro.

Fibro is an underlying, non-lethal, non-curable, relentless, permanent pain. Okay, cool. I can let it run my life. I can make excuses not to do things because of my fibro. I can sit around and feel sorry for myself. I hope to God I don’t do that. I don’t want to do that. I want to be mindful of how I live my life. I choose. I chose to work in the garden this morning, knowing it would wipe me out (sweating for a few hours in the sun and heat will wipe a lot of people without fibro out too), and knowing I would not be comfortable with going out this afternoon if I work in the garden. I chose the garden. I chose the garden over people. My choice. Not the fibro’s choice. Fibro does not have that power over me. I’ve worked for years to understand my own power over fibromyalgia. I’m not relinquishing that power, even to an offhand unthinking remark.

I’m a very lucky person. I have a job that has been transferred to home for at least the long term. My husband has been able to keep working. All my friends and family are well and healthy. My dogs have learned that when I open my computer they are supposed to groan, fall on the floor, and sleep. I have a roof and food. I’m a very lucky person.

And yet I struggle, mainly with mental health. Only part of it is being at home 98% of the time. Cabin fever during spring and summer is difficult, but not impossible. I’ve gotten stuff done, what with having 2 extra hours a day when I’m not driving back and forth to work. But I get unsettled by how little I actually get done with those extra 2 hours. Obviously, it hasn’t been spent contributing to this website. Negative thoughts creep in accusing me of laziness. I can handle that.

The biggest problem has been the inability to get into the swimming pool. Up to about a month ago, I was having serious issues with functionality and mobility. I couldn’t sit up straight at my home desk to work. I had to lay down at lunch and immediately after work. I could work in the garden for an hour, tops, and only with breaks. Too tired to fix proper food, gaining weight. I started envisioning myself shopping in an electric cart, with a walker hanging off the back, unable to stand straight at the counter while buying stuff. At this point, if that happens it will be my fault. Not a blame game – reality.

And then came a picture. I was at an event with people I like tremendously who wanted me in a picture with them. It was disappoint them and myself or face that damn camera. I faced the damn camera. It was stunning. I had a choice. Continue, die early and miserable. Change, fix the mobility issues, fix the eating issues, lose a little weight, like myself again.

So about a month ago, I started a cleanse. I don’t cook, so I decided while I do this cleanse, if I walk away a little lighter but with a better knowledge about food and how to cook healthy, I will have succeeded. I succeeded. I can cook. I even like cooking now. But I’m only cooking for myself. I had to remove the fear of cooking for other people and trying to please them. I removed it by focusing on myself. Doing it for myself. I didn’t learn to cook to please anyone else except me. I don’t want to lose weight to be a model or to have people look at me. I want to lose weight to maintain mobility and functionality. It’s all about me. As soon as I removed that stress, and convinced myself I was worth it and deserved it, I started to enjoy myself in the kitchen. Cleanse is done. But I’m not changing the food. I liked eating primarily vegetarian – it tasted good. I was amazed. I am, however, a carnivore, so don’t expect me to be changing the world anytime soon. The fact is: I can be satisfied with food completely unlike anything I’ve been eating. I can enjoy myself fixing it. I can feel healthier eating it.

Is the fibro pain gone? Heck no, but the swelling in my joints is visibly better, so my mobility is notably better. I can last longer in the garden. I can sit at my computer at the end of the day instead of laying down, if I want. Life is good. I’m a very lucky person.