I "create awareness about migraine disease and headache
disorders as a regular patient with a life full of other obligations" in a
way that I had never anticipated. It's proven highly effective, however, and
I'm pleased with the results, and the awareness that is raised is real, all
without my really trying that hard.
But that sounds a little weird. I do try very hard to raise
awareness about migraines. I just do so in an indirect way, as I've found out
through experience that I can come off as a bit too intense if I come straight
out and just aim all my energy on an individual (or even a group) all at once.
Thus I've learned to take a more subtle approach to this issue of raising
awareness
I have had the same migraine for over a decade now. I got a
migraine in early September of 'o1, and it never went away. That was a while
ago now. At first, I was ashamed of my pain and tried to hide it from
everybody. I was tired of not being taken seriously because of my
"over-exaggerating" how bad it was. So I became a silent witness to
my pain. That didn't work out that great. The only place that I felt I could
truly be myself, and raise to the top the amount of pain that I was in, was
online.
Writing in my journal online was the best therapy I really
had at the time. Then, on a migraine community, I started reading about people
having "spoons". I didn't get it, until some saint linked me to
Christine Miserandino's "Spoon Theory". It was awesome, and
completely understandable. I linked it to my mother and sister, and we've been
using "spoons" as a descriptor for the amount of wherewithal I have
left to deal with the day ever since.
I have, over the years, linked many people, sufferers and
"supporter"s alike, to the Spoon Theory. I've also paraphrased it in
talking to people in real life. Sometimes, I'll grab a handful of spoons, just
as Christine did, and explain the Theory.
In March of this year, I finally did something I really
wanted to do for a long time; I got my very own spoon, tattooed on the side of
my head, right behind my right ear, where I can touch it as a totem and a
source of knowledge that I will always have just one more spoon. As I tend to
wear my hair in a ponytail, the tattoo is visible and it's raised some
questions as to its meaning.
(freshly done)
I was asked if I was planning on getting a fork and knife
next. Cute question, and I was able, as the questioner in this case suffers
from chronic pain, to point them to the Spoon Theory, and help them understand,
not only my pain, but theirs as well in a different way. She felt relieved to
know that she wasn't weak or anything like that to have fewer
"spoons" some days than others.
So, my creating awareness hasn't been limited to migraine or
headaches, it's been to create awareness about one's own limitations, and that
it's ok to have such a limitation.
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