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20 February 2006

an enlightening chat

Last night I had a chat with a good friend, and for the first time I think I was able to better articulate why I want this blog to be anonymous, and why I don't want to tell my friends & family just how severe my Migraines are.

It's not beautifully written, but the conversation is as follows:

how is school and your migraines?
12:27 AM me: school is okay, migraines have been pretty awful lately
12:28 AM friend:what's wrong with you??? have you always had these headaches?
12:30 AM It's a disease... & I'm trying to be more okay with it, talk about it more, etc. It's always been bad but I didn't "come out" about it full-force until recently, just mentioned it once in awhile to certain people.
Had it since I was 13 or so
12:31 AM friend: do you have them more when you have your period?
my friend M. gets them debilitatingly bad, but only then
12:32 AM me: usually. I was on the pill to help that for awhile, but the pill can also increase migraines in general and it wasn't helping me, so I just went off it
I have chronic daily headache (CDH) and migraine disease, which means for me that I have 1/3 of a migraine 5 or 6 days a week and it gets terrible 2-3 of those days
12:33 AM if you don't tell anyone, I can tell you about my new top-secret blog that might help you understand more!
I don't want people to know it's me b/c I am still afraid of coming across as complaining.
friend: WOW!!!!
12:34 AM you're like a super undercover medical....i lost my train of thought on that one, but I think it's grat that you're blogging it. It's helpful for others AND
me: AND?!
hee hee
12:35 AM friend: it really good for you to "complain" (although that's silly to say that) and get it off your chest, ya know, ventilate.
I look forward to reading it and won't let on about your secret identity
me: it's true. I'm trying to realize that more.
thank you.
12:36 AM I have to figure out more how to make it all top secret. must make up a fake email address
friend: but why?
12:37 AM me: I don't want people to know it's me
I don't know why
friend: are you embarrassed?
me: sort of to make it that it's common, not an "everyman" kind of thing
but just that the more specific I make it to ME (with a name, location, etc.) it's as if it's my story in particular, when really my life mirrors MILLIONS of others.
Hard to explain. Maybe I'll change my mind eventually.
I'm not embarrassed
12:38 AM but since I've come out about it and talk about it a lot more, I am a bit wary of talking about it too much. My friends are totally supportive, but still.
friend: I understand that..
me: I also know it hurts my friends to know I'm so sick, and it kills my family. And letting them know about the blog would be like letting them know it's far worse than they think it is
12:39 AM friend: okay, i get it. I did the same thing...down play something that's really really wrong for the benefit of others...
12:40 AM
friend: But is this going to be fatal...i mean are there links to that?
me: no, no links for me.
it's not terminal, just chronic
the correlation for stroke is higher for people with migraine with aura, but it's not dangerous
12:41 AM
friend: Is that why you can't have fake sugar?
me: yep
or fluorescent lightss
or be around strong perfumes and cigs
or stress out
or have stress relieved
or have red wine sometimes, but I never know when it'll affect me
's a mess with all the triggers
12:43 AM friend: what about loud music!!
me: that too
it's hard to explain--the neurological disease is always there, and those things we mentioned are triggers, not causes
12:44 AM so the disease is always there, and my threshold for the triggers changes. sometimes I can go to a loud rock show and be fine--that's almost always the case. But other times it will kill me
so I have to always be in tune
and sort of save my energies and decide how I want to spend my time, etc, know ing I'll be sick sometime but having to decide what's worth it and what's not
12:47 AM friend: I'm very glad that you told me. i know it can be annoying to be "the sick girl" or have people always worried about you, but it's also a very very lonely world to keep the big things to yourself.
12:49 AM me: sorry
got kicked off for a sec
thanks for listening, though
and feel free to check out ye olde blog
12:50 AM friend: i am right now you little ghost writer :)!

friend: okay...sweet dreams

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