Like most
with an invisible chronic illness, this is difficult enough to figure out on
our own, let alone have to explain it to someone who has no clue. For a long
time, even before my diagnosis, I wondered why some days I could do it all and
other days I could do nothing; not even get out of bed. I could never figure
out a rhyme or reason to any of it. The most baffling were the days that I
maybe did two seemingly easy activities, such as shower and go grocery
shopping, and I would be EXHAUSTED! Being told, "Come on! Get moving! The
day isn't even half over.", would only make me feel worse. And though I
knew something was wrong with me, as did those around me, no one could tell me
what it really was. Without a name, I didn't know how to treat it or how long
before I could find the cure or antidote.
But even
after finally being diagnosed and being told there was no cure or sure
treatment, I didn't understand why I couldn't find a balance as to what I could
do, when or for how long. What was worse, was those around me didn't know or
understand what I was going through. They wouldn't believe me when I hit my
limit when just the day before or even earlier in the day I had tons of energy.
Or there were times, especially when I was younger, that I could seemingly be
fine and thinking I finally figured out a groove for myself, only to wake up
one day and not be able to do anything for a week without extreme pain and
fatigue.
Then one
day, I was told about the "Spoon Theory". I forget who told me
exactly, but I think it was one of my doctors' assistants. She told me of this
story a woman shared with her friends to explain this idea of limited energy,
using spoons as a unity of energy.
To read her full story:
The Spoon Theory
by
Christine Miserandino
To
summarize, this woman was out with her friend one day when her friend ask her
what it was like to live with her invisible chronic illness. Being that they
were in a restaurant at the time, she looked around, grabbed 12 spoons and told
her friend each spoon represented a unit of energy. She only gets 12 a day and
if she borrows from the next day, she will have less to work with the following
day. Then she explained to her friend how each activity cost her a certain
amount of spoons and how she had to remember about her illness and make choices
about what she would do each day so as not to over use her spoons or she may
not make it through the day. It was such an eye-opening experience and analogy
for this friend, the woman knew she was on to something and started sharing her
story to help others with chronic illness and their friends and family
understand the challenges we are faced with every day of our lives.
Here's an example of what this looks like:
People with
different illnesses or to varying degrees start each day with a particular
number of spoons. Whatever that number is for them, that's what they have to
work with.
For me, I
should probably be operating on maybe 15 spoons a day. But, my life demands
that I use a minimum of 35. So that simple math shows that I do more than I'm
supposed to and why I'm in such a deficit. Doing more than I should and pushing
myself to do more than I'm truly capable is probably what has put me in this
over-stressed position that I find myself fighting for my life. So when people
get frustrated with me for not doing more, I try to explain it like this. They
don't always get it, but it is the way I have to work my life. I have to make
choices every day that most people don't have to make just to try and keep up.
As much as I liked to think of myself as Super Woman, I am not and I cannot do
it all.
So when I
say I'm all out of spoons, I can't participate in that today, this is what I
mean. Or if I ask to borrow spoons, which really I can't, I'm referring to
spoons as a unit of measurement for usable energy.
Here is
another example using batteries:
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