My HPS friend Karen T recently had a great post on her blog about “The spoon theory.” (Check it out at: http://www.myspace.com/karenshpskorner). Essentially, the spoon theory is a tool for explaining what it’s like to live with a chronic illness.
For people with chronic health problems, even those of us with relatively mild health issues at present, life isn’t the limitless set of choices most people wake up with every morning. Instead, it’s a process of budgeting your time and energy to live the best life possible.
The spoon theory makes this point by giving a healthy person an allowance of spoons for the day. As the daily events unravel, the sick person explains what must be budgeted for, and takes away a spoon for each task.
Donna last week had a similar educational tool. A friend of hers had made the point to her boss by putting a stickie note on her clothes every time something happened in her day that related to her disease.
For example:
Got up late because I couldn’t sleep. My joints hurt – one note
Took medications – another note
It got me to thinking, even on my very best days, what would count as a spoon, or a stickie note?
Constantly being tired would be one. There are some days when I know I don’t look well put together, and to be honest, I don’t care. I needed an extra hour of sleep way more than the perfect flip to my hair.
Advocacy work takes a lot of spoons. Its long hours working on projects, talking to people on the phone etc. Participating in medical research is another with the three weeks of work I miss a year, assuming I never even catch so much as a cold.
The days when my bowel issues are acting up are another. There are days when, over the course of the day, I spend as much as an hour of my day in the bathroom in five to ten minute blocks. Or there are (thankfully rarely these days) times when my breathing isn’t so hot and I’m easily tired. I have to choose between doing the dishes, or filing papers in my study, or dusting the living room. I can’t always do all three in the same evening.
The story hit home with me because I so often feel as though I’m falling short. The mistake I didn’t catch while editing because I was just too tired. My messy apartment because I choose to use a “spoon” talking to a new HPS person instead of cleaning. The times when I have to cancel plans with friends at the last minute because something has happened that makes it impossible to go.
Sometimes there are days, even weeks, when I’m doing great and I’ve got the same number of spoons as anyone. But, during these times it isn’t as though everything is perfectly normal. There’s a backlog of tasks left undone from those days when there weren’t enough spoons to do it all.
I don’t know anyone in this busy, modern world of ours that has enough spoons for everything they want to do. Everyone is stretched to the maximum trying to juggle career with family, long term goals with short tern needs. Those of us with chronic health issues, even those of us that look okay on the outside, must compete in the same world with the same demands – yet with maybe ¾, or a half as many spoons as everyone else.
For people with chronic health problems, even those of us with relatively mild health issues at present, life isn’t the limitless set of choices most people wake up with every morning. Instead, it’s a process of budgeting your time and energy to live the best life possible.
The spoon theory makes this point by giving a healthy person an allowance of spoons for the day. As the daily events unravel, the sick person explains what must be budgeted for, and takes away a spoon for each task.
Donna last week had a similar educational tool. A friend of hers had made the point to her boss by putting a stickie note on her clothes every time something happened in her day that related to her disease.
For example:
Got up late because I couldn’t sleep. My joints hurt – one note
Took medications – another note
It got me to thinking, even on my very best days, what would count as a spoon, or a stickie note?
Constantly being tired would be one. There are some days when I know I don’t look well put together, and to be honest, I don’t care. I needed an extra hour of sleep way more than the perfect flip to my hair.
Advocacy work takes a lot of spoons. Its long hours working on projects, talking to people on the phone etc. Participating in medical research is another with the three weeks of work I miss a year, assuming I never even catch so much as a cold.
The days when my bowel issues are acting up are another. There are days when, over the course of the day, I spend as much as an hour of my day in the bathroom in five to ten minute blocks. Or there are (thankfully rarely these days) times when my breathing isn’t so hot and I’m easily tired. I have to choose between doing the dishes, or filing papers in my study, or dusting the living room. I can’t always do all three in the same evening.
The story hit home with me because I so often feel as though I’m falling short. The mistake I didn’t catch while editing because I was just too tired. My messy apartment because I choose to use a “spoon” talking to a new HPS person instead of cleaning. The times when I have to cancel plans with friends at the last minute because something has happened that makes it impossible to go.
Sometimes there are days, even weeks, when I’m doing great and I’ve got the same number of spoons as anyone. But, during these times it isn’t as though everything is perfectly normal. There’s a backlog of tasks left undone from those days when there weren’t enough spoons to do it all.
I don’t know anyone in this busy, modern world of ours that has enough spoons for everything they want to do. Everyone is stretched to the maximum trying to juggle career with family, long term goals with short tern needs. Those of us with chronic health issues, even those of us that look okay on the outside, must compete in the same world with the same demands – yet with maybe ¾, or a half as many spoons as everyone else.
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