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Amanda
My parents are hard workers. It doesn't surprise me that… 
6th-Sep-2009 11:31 am
save the tigers
My parents are hard workers. It doesn't surprise me that I developed a pretty decent work ethic -- what no one could have expected, I suppose, was the twisted, distorted way it affects my life. I can't call out sick without being wracked with guilt -- unless, say, I have a horrible temperature or illness. Being sick involves active problems: coughing, vomiting, pain, etc. It involves being flushed, or pale, or visibly ill. I always feel like an absolute fraud when I tell someone I don't feel well, because I always LOOK bright-eyed and bushy-tailed. If I look well, then I AM well.

I constantly forget -- or will myself to forget -- that I am sick every day of my life. I'm still learning what that means. While I was trolling the Internet last night, I found this interesting site: http://www.butyoudontlooksick.com. It's a site by and for people with "invisible illnesses" -- for me, that's my diabetes (now plus a hiatal hernia and lactose intolerance). For many on the site, it's about fibromyalgia, or lupus, or anything that makes someone feel shitty inside but look perfectly fine outside.

The woman who runs the site wrote an essay about the Spoon Theory. I really recommend everyone read it, because I know several people on my f-list with issues, and pretty much everyone knows someone with a condition, whether they know it or not.

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

In short, the spoon theory discusses the difference between someone who is sick, and someone who is healthy. Healthy people do things without thinking about it -- sick people don't have that luxury. Sick people only have so many "spoons" -- or units of energy, I suppose -- and have to spend them carefully. Every day is a decision about what can get done, and what can't. You can "borrow" spoons against tomorrow, but that makes tomorrow even harder. It's a life of details -- for me, that means knowing my sugar constantly, knowing what foods I can eat at different times of day, testing constantly, adjusting the settings on my pump, remembering to give myself insulin, being on top of how I feel EVERY SECOND because any deviation can mean a dangerously high or low blood sugar.

It means a life of vigilance.

And I'm fucking sick of it.

And I'm tired.
Comments 
6th-Sep-2009 06:48 pm (UTC) - This made me cry.
I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
6th-Sep-2009 06:51 pm (UTC) - Re: This made me cry.
That excerpt is the whole point, I guess. That difference is what defines someone who's chronically ill -- the lack of freedom.
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