Saturday, 19 March 2016

Spoon Theory

Cycle six recovery is not going quite as smooth as cycle five. I've spent the last two days lounging around, binge-watching Elementary, but I have not been able to keep the headaches away. I don't think I've done anything really different so I don't think there is a way for me to fix it. It may just be having a different doctor do the intrathecial injection or an accumulation of the chemo meds or just something that is happening. 

I did have more energy today which I then burned up as quickly as it arrived. It wasn't enough energy to make it to the walking track as I had previously hoped but enough to clean up the house a bit and make loads of peanut butter balls.

My limited energy has me thinking about the spoon theory which I may have mentioned years ago but since it came up again in the Furiously Happy book by Jennifer Lawson, I thought I would mention it again.

The spoon theory by Christine Miserandino postulates that people with a disability, either mental or physical, often have a limited amount of energy, which she represents through spoons. Each activity a person does during the day takes a spoon and when you run out of spoons, you're pretty much done doing stuff for the day. Some days you get a handful of spoons and some days you get a bucket.

Every activity requires a spoon so if you decide to shower, that's a spoon. If you do some dishes, that's a spoon. If you make supper, that's a spoon. If you go out for coffee with a friend, that's probably three spoons because you have to get to the place, focus on the conversation, and get home.

It's a good metaphor as people without a disability often don't realize how much energy is required for a person with lupus or anxiety or cystic fibrosis to get through their day. As people without disabilities often have a limitless amount of energy and don't think twice about things like 'getting a shower' or 'cooking breakfast.' Or, if you have CF, 'walking up the stairs' or 'breathing.'

I know, before my transplant, I had to figure out which days I was going to spend a spoon on activities like showering or putting away laundry. It seems like something that should be effortless but if I spent a spoon doing those activities, it could take away from something I would want to do later. If I had pottery class in the evening, I had to make sure I did as little as possible during the day so I would have energy for the class. There was only so much energy to spread around so where to spend it is important.

It's not something that people with disabilities are actively thinking when planning out their days, if you have a chronic illness, it's basically second nature. You know that you can't exercise in the morning and expect to go on a hike in the afternoon. Most days are limited to 'one active activity a day.' Showers, meals, and cleaning are planned accordingly. It's when you try to explain the system to someone without a disability when you realize how much effort simply planning ones day can be.

Since healing after the transplant and before all this cancer nonsense, I hadn't had to think about my decisions as much in 'spoon terms' as showering and doing dishes were pretty much effortless. I had endless supplies of energy so it didn't seem to apply to me anymore.

Suddenly it's applying again. And boo to that. I'm back to having limited amount of energy as the chemotherapy is wiping me out. On these in-between days where I'm not feeling great but not in the hospital, I have to think even more about what I'm going to do with my energy. Do I spend it baking? Or should I try to exercise? Or should I clean up my art room? Even on my good days, I feel like I have a limited amount of spoons and have to figure out the best use of that energy. It's frustrating, I want all the spoons again!

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