(Neither list is ordered or complete)
First, the negatives -- what do I miss about "normal life"?
1) I miss being able to watch thunder & lightning storms without thinking that the lightning is going to look like strobe lights to my brain and my brain is going to react by going into migraine mode.
2) I miss being able to drink a Coke or Mt. Dew now and then. And to not have to worry about whether or not my root beer has caffeine in it, because if it does, I'll pay later.
3) I miss being able to hang out with friends and drink wine. Or go to happy hour and get a drink. I didn't drink often, but this drinking water ALL the time because I have to (or else!) is frustrating. It's not a choice any more, it's a demand.
4) I miss being able to ride my bike when I want to. This sounds weird, but in the past two weeks I've only been able to commute by bike once, because I'm afraid that my dizziness is going to be to much and I'm not willing to risk it.
The positives -- what I've learned (or has been reinforced) from my headaches:
1) My family is incredibly supportive of me. They truly want the best for me. This is the only thing they worry about in my life, which both amuses me and frightens me.
2) My boyfriend is there for me. Whether it's driving me to urgent care, getting medicine from the store late at night, or just putting up with me, he's done it all. Today he decided we should go walk around a forest for two hours because it's what the Japanese do to improve their health. And, despite my misgivings, he managed to get me to walk around, in the rain and humidity, with bugs for over 1.5 hours (when HE chose to go back to the car).
3) I know what a good doctor looks like. Before my migraines I'd go to whatever doctor I could get an appointment with and I couldn't tell you much of who was good and who was bad. Now I can. And while I'm not that great at it yet, I'm working at learning how to advocate for my own care.
4) I've learned that I have excellent health insurance and great hospitals and clinics. Apparently lots of clinics don't treat someone with a migraine with dignity. I have never been treated with anything less. Similarly, my health insurance is simply amazing. I had no clue how well I was treated until this year.
5) I've started reading an interesting set of literature to learn about my health. This involves medical journal articles, web sites, and real paper books. Currently I am reading All in My Head by Paula Kamen. It's an interesting mix of autobiography and history of headaches and headache treatments. Hopefully I'll write more about my findings later this week. Through these readings I'm learning fascinating facts and tidbits about my brain and the world of headaches in general.
6) Lastly, I've gained a new appreciation for the non migraine days I have. If I wake up feeling good, it isn't just a good day, it is an EXCELLENT day. All of a sudden I am productive, I can think, and I am normal. These days are fantastic. It makes me smile just thinking that tomorrow may be one of them.
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