My eyes are fine! (Mostly)

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The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine. A version of this post appeared first on August 1, 2012, on my blog of the same name.

Upon finding out I have chronic migraines, people almost always ask me, “Do you need glasses?”

My answer has always been a (probably somewhat snippy) “No, my eyes are fine.” But there’s always been that shred of doubt. Well, what IF I do need glasses? I’ve always had 20/20 vision, but what if years of hunching over books, reading in low light and staring at computer screens has caused my eyes to degenerate?

Today, I saw an optometrist. At the end of my appointment, while I attempted to blink away retinal burn from the blinding lights he’d been shining into the back of my eyes, he told me what I had known all along: My vision wasn’t causing my migraines. In fact, he said, the two (in my case) were unrelated. I should have asked him to write me a short note that I could laminate and pull out of my purse when asked the glasses question:

Kelly’s chronic migraines are not caused by her vision.

Signed,

Dr. H.

My right eye squeaked by with 20/20, and my left with 20/25. I was prepared to brag to my husband that actually, dear, my eyes are FINE, thank you very much (it was he who insisted I make this appointment–I would have lived with the doubt). Of course, there was a caveat. There’s always a caveat.

Dr. H. flipped lens after lens in front of my right and then left eye, asking each time if the change made the letters on the wall blurrier or clearer. When he removed the viewfinder from in front of me, he jotted a quick note on my chart.

“Well, you’ve got a bit of astigmatism,” he pronounced.

He asked if I knew what astigmatism was. I did: Basically, your cornea is shaped funny, more like an oval than a circle. My father has it. So along with my flat feet and asthma, I can now count astigmatism among the ailments he’s given me. I think I need to ask him again if he ever gets migraines.

As children, our brains have an easy time adapting to the misshapen cornea, but as we get older, focusing gets more difficult. So it’s likely that my vision will deteriorate as I age. Dr. H. suggested I get glasses to wear as-needed, like when I’m using the computer or driving at night, to reduce eye strain.

Wearing them a little bit or all the time apparently won’t make my eyes better or worse, but I will have to adapt to them. With astigmatism, you also see the world at a slight tilt, but your brain corrects for it. These glasses will also correct for it, so when I get them, it will seem like I’m looking through a fishbowl for a few days, and I can expect a headache.

But then again, I always expect a headache.

What annoying questions do people ask you about your migraines? Do vision problems contribute to your pain?

Miss Migraine: Migraine jargon

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The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine. A version of this post appeared first on August 2, 2012, on my blog of the same name.

I
If you have migraines, they call you a “migraineur.” It rhymes with “entrepreneur,” but it’s not in the dictionary. I think it’s an ugly word, that it implies you create migraines or that you organize or manage migraines, usually with considerable risk. Migraines might come with considerable risks: pain, nausea, dizziness, weakness, blurred vision, more pain, depression, anger at circumstances, irritation at loved ones for incessant (but well meaning) “how are yous,” still more pain, inability to function on an adult level, etc., but so far the ability to organize or manage them has escaped me.

I know that’s not how the roots of the words really work. The roots of “entrepreneur” mean “someone with enterprise,” and the roots of “migraineur” just mean “someone with migraine.” I guess that’s me, but I don’t want to be called that. I don’t want to be that.

And, I already have a name.

This isn’t the place I wanted to inhabit. (Photo of the porch roof and street outside an abandoned house about to be torn down on Negley Avenue in Pittsburgh, PA, 12/1/2008. By Kelly Lynn Thomas)

II
They always tell you to avoid your “triggers.” What “triggers” your migraines? they ask. I hate that word, too. It implies a beginning to the pain. A beginning implies an end. But for me there is neither, just an endless line, or a circle, or a constant in an equation that always works out to the same number.

So I tell them everything. Everything triggers my migraines. When they look at me skeptically, I run through the list: weather, too much caffeine, not enough caffeine, chocolate, cheese, nuts, not eating enough, stress, not enough sleep, too much sleep, loud noises, bright lights, strong smells. Then they usually ask me if I need glasses.

III
Treatments: There are endless migraine treatments. Medications, vitamin supplements, diets, sleep behavior changes, occipital nerve stimulation, acupuncture, chiropractors, reiki, biofeedback. There is always a new one, and it is always a miracle for some random person on the internet.

The number of these things is exhausting. I read somewhere that it would take 25 years to try every single migraine medication available. I’m 25 now. Maybe if I had started when I was a baby, I could have found the right drug already.

How do you feel about migraine jargon/terms? Does it comfort you or irritate you?

Miss Migraine: Another way of living

Banner that says "The Adventures of Miss Migraine"

The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine. A version of this post appeared first on August 3, 2012, on my blog of the same name.

I am currently reading a book of essays on writing fiction called The Half-Known World, written by Robert Boswell. One of the essays examines the use of “alternate universes” in literary fiction–not literal alternate universes like the Bizarro World of Superman, but moments in a text when a character’s “vision expands beyond its usual limits.”

On page 111, there’s a passage that struck me as particularly relevant to those of us living with chronic illnesses, especially invisible ones. The passage is as follows:

There are times when it seems there must be some other way of living, moments when the utterly ordinary takes on a measure of strangeness. Now and again, you may even feel as if you live in two worlds at once, one that is orderly and regular and looks like representations of life you’re accustomed to, and another that is disorderly and irregular and nothing like representations you’ve seen anywhere.

Even though the essay is about fiction, this paragraph speaks directly about people. And I know this feeling exactly.

For a long time I tried not to talk about my headaches, because it always garnered the same responses: do you need glasses, could it be something else, that sucks, I’m sorry, the you-are-faking-it look, the awkward silence. So I lived (or tried to) like a superhero, with two identities. Normal Kelly, who went out and did things and had fun,  and Migraine Kelly, who laid in bed with an icepack on her head. In many ways, that hasn’t changed, except that now I talk about my illness openly (and try not to get too irritated by the canned responses).

And then there are times — a half a day every few months or so — when the pain subsides to the point that I don’t notice it at all. In those moments, I feel wonder and amazement. I search my head for the pain. It’s hard for me to believe that it’s not there, but when it isn’t, truly isn’t, I feel as though I’ve been transported to another universe, maybe another body. I wish I could stay there, but a migraine always brings me back to myself.

Ultimately, I’m not sure which mode of being feels more normal to me, more “orderly and regular,” and which one feels more strange, “more disorderly and irregular.” That scares me a little bit. I’d like to say I’m accustomed to being normal and social and happy, but I fear the truth is that I’m not. I’m accustomed to being in pain, to limping through life, being careful not to do anything to make the pain worse. But I do feel like somehow, some way, there must be another way of living. I just haven’t found it yet.

(The book is, by the way, quite excellent, and I’d recommend it for any writer or avid reader. Click here to order the book. I’m not getting anything to say that, either!)

What’s your “normal” mode of being? How do you envision that other way of living for yourself or anyone else you know who lives with an illness?