Friday, June 29, 2012

Migraine Awareness Month #29: "More Often Than Not"

So apparently today is Chronic Migraine Awareness Day.

Lucky for me, I do not need my awareness heightened, since chronic migraine makes itself quite known to me most days, thank you, and today is no exception.

But for those of you unfamiliar with the condition, Teri Roberts has a terrifically informative post over at Putting Our Heads Together. She also offers a very useful definition of chronic migraine:

As defined in the International Headache Society's International Classification of Headache Disorders, Second Edition (ICHD-II), which is the gold standard for diagnosing and classifying Migraine and other headache disorders, chronic Migraine is Migraine or tension-type headache 15 or more days per month with at least eight of those being Migraine. In other words, people with chronic Migraine are in pain more often than not. Some people actually have a Migraine or headache every day. You can read more about chronic Migraine in  Chronic Migraine - What Is It?

Today's National Migraine Awareness Month Blogging Challenge prompt is:
I am a little uncomfortable with this challenge, because to me it feels like a plea for favors, with which I am deeply uncomfortable. If you are interested in suggestions made by other bloggers, you can find them in the posts linked in the comments here.

I think the nicest thing a person could do for a chronic migraineur is try to understand. Knowing the ICHD-II definition is an important start, because then you know that a chronic migraineur is not making this up, that it is not in their head, that they are not exaggerating, and that really this is not something that is going to go away tomorrow.

But beyond that, understanding that there are more days than not that a person might not be their best at work, or might not be up for something fun, or might have to cancel at the last minute (again!), or might not answer their phone, or whatever.

And if you happen to run into that person and they have that horrible scrunched-up look on their face, or they seem spaced out, or you've found them lying on their office floor with the lights off, you might ask if you could bring them a coke, or a snack, or something like that.

The thing is, gestures of kindness need not be large to be very, very appreciated.

Tuesday, June 26, 2012

Some Migraine-related Links of Isis.

I have kind of run out of steam on following the National Migraine Awareness Month blogging prompts. Nothing against the prompts themselves, but they have not been speaking to me personally. So instead, I might try finishing up the month with some unprompted blogs.

Today, though, I just want to give you some links.

I just read over at "That M Word: A Migraine Blog" this post about what migraine looks like from the outside--and about family and friends who want to understand but don't (yet?). The writer (who does not name herself) mentioned "The Spoon Theory," with which I was not familiar, so of course I had to follow the link trail back to it.

Here it is: "The Spoon Theory by Christine Miserandino."

What an incredible way to understand chronic illness--and the perfect metaphor for short-handing the challenges it poses.

This article--"Migraine"--is a nice, general introduction to migraine disease--what it is, what we think we know about it, and ways we try to treat it. My only complaint about it is that, once again, the typical progression arc of a migraine is represented without much acknowledgement that that is not the only pattern. I frequently find myself reading these narratives saying, "Yes, those sound like my aura symptoms--but what don't they go away before the headache? And why do they often appear and disappear randomly, or persist for days?"

This article--"When a headache never goes away"--interests me because it offers a theory of headache disorders that is completely different from anything I have yet encountered. I had never heard of cytokines before, and now I am eager to learn more. I have shied away from a lumbar puncture (1) because of earlier bad experiences with needles, and (2) because they frequently bring on horrible, long-lasting headaches, but perhaps it is worth considering.

And more than anything, that last link offers me encouragement that there is always another thing to try. I confess that I oscillate between trying things--new drugs, an MRI of my brain, old drugs but just one more time, an MRI of my neck, no gluten, an EEG, no dairy, a new pillow, shock-testing for nerve firing, blood tests, massage, urine tests, another new pillow, no eggs, feverfew, a serious yoga program, no caffeine, no alcohol, chiropractic, physical therapy, etc., etc.--and trying to practice acceptance. Oddly--and confusingly--I often try both at once: I keep searching for improvement, but I also try to accept that this is just how things are now. But when I read an article in a reputable source about some new way that a doctor has come to understand migraine, well, I get more optimistic, reminding me that new knowledge does evolve.

Sunday, June 17, 2012

Migraine Awareness Month #17: "Father Knows Best"

I really need to title today's post "Father Knows Best, and So Does Mother," because both my parents have been remarkably supportive of what I've been trying to deal with around migraine.

So thanks to both of you.

Today's prompt reads:

I figure the prompt is focused on fathers, because we are in June, and so we encounter father's day. But I don't see a need to masculinist about my post.

Dear Dad & Mom,

Thank you for loving me, regardless of the various difficult challenges I have faced in my life. I am and always have been grateful to have you both in my life--as parents, as role models, as confidantes, and as friends.

As this is Migraine Awareness Month, I will speak to issues specifically surrounding migraine.

Mom, thanks for helping me understand this disease, through your own experience with it.

Both of you, thank you for being understanding and kind as I've tried to navigate my way to an understanding of what Migraine presents--its challenges, its symptoms, its unpredictable nature, its complications, the way it intrudes on things I'd rather be doing, the way it changes my sense of who I am.

It means a great deal to me that when we talk on the phone, you always ask how I have been feeling, and that you want so much for me to feel better. But not for me to pretend to feel better, just to make things better for you, and for other people. I am grateful that you appreciate how complicated this experience is, and how it infringes on so many things.

It means even more to me that when we are together you are so flexible about what I can and cannot do, and that you trust me to do what I can, and to rest when I need to. In many ways, that makes it easier for me to try to be as strong as I can.

And I appreciate your willingness to go along with the various attempts I have made to make things better--giving up gluten and dairy and eggs right at Christmas, going without caffeine, going without alcohol, even though none of things has brought a solution--even though I know they make things harder for everyone else, too.

Most of all, I love knowing how much you love me, and how much you want these things to be better. Every time I can see that love, it makes me stronger.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by

Tuesday, June 12, 2012

Migraine Awareness Month #12: All your sanity and wits, they will all vanish (I promise)

I admit it: I am playing a little fast and loose with today's Migraine Awareness Month prompt. I hope that by now you are all decked out in your little purple ribbons, in solidarity with me and other migraineurs everywhere.

Oh right, but back to the prompt, which I plan to tweak significantly:

The thing is, migraine feels more complicated to me than just a simple old monster, and I want to acknowledge that. Besides, when I am laid out by a bad flare of migraine symptoms, I try to keep my sense of humor. And those the first three little words of the title given by the prompt (but that I did not keep today as my title) make me want to do a dance, but not the Monster Mash!

Don't get me wrong. Dr. Frankenfurter's birthday bash is frightening indeed--and the experience of migraine is astounding, and time does indeed seem to be fleeting as madness takes its toll. But the thing is? I can't turn away, either.

So more so than some movie monster, what migraine makes me think of is this:

It is not just Eugene Hütz's injunction to get your little migraine ribbon on already.

Part of it may be the seemingly orderly panel discussion at the beginning: this time they will explain it all to me. But then it all goes a little nuts, and the reality of the situation becomes clear. When migraine strikes me down with a fearsome attack, these people are partying in my brain but did not invite me.

Sometimes I feel great as an attack gets going--kind of elated, too amused by my own wits, too prone to say something that will get me in trouble. I figure that at that stage, I still believe that maybe this time I will get an invitation.

But it is all clear when the promise of vanishing sanity and wits comes: It's just a matter of time.

It kind of scares me how much familiarity with me these Migraine People seem to have with me--how long they have known me. . . .

And perhaps my own inability to find words I want, or sometimes even to speak, is my cue that I should be switching into primordial Ukrainian, which of course I do not speak, so all I can do is stutter.

More than anything, though, I love the sense of a cabaret at the end of the world--let's all drink and dance and fuck ourselves stupid, because we are dying anyway.

One thing I notice when I am experiencing migraine is that it feels less like a foreign occupation or an attack than it does like my own system turning on me, or turning with me. Rational or not, I feel complicit--I'm in the milk and the milk's in me! It's alienating and seductive all at once, that desire to succumb to what the disease is bringing--especially when I am in a situation where I cannot really release myself to it because I am, say, at work. What dancing! What fabulous shoes! People are holding chairs in their teeth! Someone has busted his head through a drum! People are wearing striped tights and playing accordion and shooting bows and arrows and taking off their clothes! And all the while someone keeps trying to close the door on them.

What do you mean, I'm not invited?

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by

Monday, June 11, 2012

Migraine Awareness Month #11: "Say what?!"

Forgive my silence the last couple of days. I did not find that the prompts worked for me, but today's is better:

The fact is, people say a lot of inane things, like "I hope your migraine goes away" (that's chronic migraine, my friend) or "Is this squeaky door bothering you?" (said while squeaking the door again and again) or "Are your lights out in your office for a seance?" (no comment).

What I've got for you is perhaps not the most ridiculous, but definitely the most hurtful thing anyone has said. In my rational mind (aren't I supposed to be listening to that?) I understand that it is also quite ridiculous in its over-the-top-ness and in its how-could-you-say-that-ness, but still. I can't quite laugh yet.

So the scene: my great uncle is coming for a visit, the same weekend as my mother-in-law and my partner's uncle are visiting. It has been a busy spell at work, which combines with who knows what else to have given me a multi-day migraine flare, which is particularly challenging since I know company is on the way. Add to this that my great uncle's visit was announced quite late in the game, and with no real opportunity for me to suggest an alternate date or anything. Anyway, I am in bed, trying to get some rest and relief before everyone arrives. My great uncle arrives, and my partner answers the door while I collect myself, fix my hair, splash water on my face, and come into the living room. My guest's first words after "hello" are:

"I'm glad your mother had shown me a picture of you: I would hardly have recognized you, you've gained so much weight."

At that point, I wanted to invite him to leave by the same door through which he had entered, while not allowing it to confront his posterior as he left, but instead I said, well, thank you. I was sorry to tell him that chronic illness had taken away my ability to exercise regularly--one of my great loves, as well as a means of staying healthy--and that had been truly heart-breaking. It has been quite a difficult period, I said, between dealing with illness and losing one of my means of coping with stress. His response?

"But you don't look sick."

Not bad, eh? Two doozies, and all within about 45 seconds of arrival.

The whole thing was, frankly, crushing. This man had had a kind of mythic role in my mind--the brother of my mother's father, who had been killed in the second world war, so his words stung on that account. And then there was what he said--not a pleasant thing to hear from anyone, especially when it's a sore point of it's own. I kept on a strong face, though, and played a good hostess to him, and then also to my other guests, who arrived not long after he did.

But when I went to bed that night, there was no sleep anywhere in my brain. I got up and wrote him a frank letter (he had left after dinner). I cried a lot. I tried hard to find some rest to get me through the rest of my visit with my in-laws, but the combination of having already not been feeling well with this emotional upheaval was powerful, and I spent much of the rest of the weekend alternating between trying to be a pleasant host and being in horrible pain.

I did send him that letter, and he responded with a really kind and, I think, heart-felt apology. And for the most part, I've forgiven him.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by

Friday, June 08, 2012

Migraine Awareness Month #8: "Let there be light."

I don't know that today's post will generate very interesting writing from me, but there is virtue in getting information out there, so here goes.

1. Sunglasses. Many pairs, with great coverage, and stashed in various locations, including (of course) the car. Prescription and non-prescription. Polarized. For short walks outside and extended duration time. Morning to sunset. On sunny days and cloudy days. People mock you for the latter, but ignore them or make jokes about Corey Hart.

2. Hats. I'm a super-fan of my Tilley hat, since it provides shade all the way around, which can be a blessing when there is low sun coming in the side car windows. Plus, it's machine-washable and comes with insurance. Ball caps are also good. And straw hats. Heck, hats!

3. Blinds. Ideally, two sets per window--some that reduce light and some that block it completely. That gets expensive, so those are only crucial for the bedroom.

4. Hang in the shade, where possible. Not a useful tip for those living in the desert Southwest, but in the Southeast, it helps.

5. Speak up. If I'm in a meeting and there is strong sun coming in, I ask to move to a different seat or adjust the blinds. Then I usually make a joke about it, because, as anyone with disability knows, it's easier on everyone if the able feel at ease.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by

Migraine Awareness Month #7: "List Topper"

I missed yesterday's challenge post, so once again I am a day late, but perhaps not a dollar short:

There are plenty of myths around migraine disease, as with so many other diseases, and that makes it hard to choose a favorite:
"It's just a headache."
"It's just stress."
(Interesting how many of these begin with those same two wretched words. . . .)
"It's all psychosomatic."

I think, though, that the myth I have the hardest time with is, is the idea that there is a cure out there.

Which always comes with the accusation that I have not been doing enough to find it.

"The answer is out there," one well-meaning friend frequently repeats. Or, "Keep seeking the solution." I understand that these statements are supposed to remind me to keep looking for ways to make this better, and to keep up hope, so I try to take them in that spirit, rather than getting pissed off that they seem to be so mis-framed.

Still: I know I have tried a number of medications, and some do help a bit. But this years-long science experiment--O, the side effects!--has not led me to my silver bullet. What's more, I've heard and read stories from plenty of other migraineurs, all of which end, "so we'll see if this works and if not, keep trying."

The other side of this are the well-wishers who say that they hope this will go away, or that I'll get well soon. Again, I try to take these wishes in good spirits, even though they might as well be wishing me blond hair, or narrower hips, or blue eyes.

I wonder sometimes whether just taking these good wishes is the right approach. What if, instead of smiling sweetly, I gave them a little lecture about how "chronic" means it does not go away, how often the headache isn't even the worst part, and how genetic diseases just . . . are?

How tiresome would that make me, exactly?

I've considered printing up a little card, and each time someone says something wrong-headed about migraine--whether well intended or not--handing one to them.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by

Wednesday, June 06, 2012

Migraine Awareness Month #6: "Name That Tune!"

I am super-psyched for today's migraine blogging challenge.

My one long-time reader knows that for me to find one theme song for this disease--or really, anything--is impossible. Instead, I have a mix for you. I alluded to this mix in my previous post, and I have posted it on Spotify, but I have yet to figure out how to share it beyond Facebook. Back in the day, I would also have posted it on The Art of Mix, but alas, it is no more. RIP The Art of the Mix.

As usual, anyone who wants a copy should contact me, but I should note that this playlist has outgrown the bounds of a CD. (I could either abbreviate it for you of get it to you some other way. We'll talk.)

Now the disclaimers.

1. Do not listen to this mix when you are experiencing a migraine attack. There is nothing peaceful or comforting here.

2. The prevailing mood is dark humor, my #1 strategy for dealing with despair. And hey, if you can't laugh at chronic, genetic, neurological disease, what can you laugh at?

3. There is a bit of musical range here. Probably everything will not appeal to everyone--except me, of course, but then it is my mix.

4. Nevertheless, I have broken one of the big rules of mix tape making and included two songs by U2. Trouble is, they both really belong here. So it goes.

5. No animals were harmed in the compiling of this mix.

6. Play it loud, when you can.

7. Dance, suckers.

Without further ado, the mix:

1. Parliament, "P Funk (Wants To Get Funked Up)"
2. Shuggie Otis, "Aht Uh Mi Hed"
3. Henrik Schwarz, "Leavemyheadalonebrain"
4. Morrissey, "Something Is Squeezing My Skull"
5. Ben Folds, "Dr. Yang"
6. Laurie Anderson, "Stiff Neck"
7. Up, Bustle & Out, "Dance Your Troubles Away"
8. U2, "Vertigo"
9. Suzanne Vega, "Blood Makes Noise"
10. The Rolling Stones, "Dear Doctor"
11. Fred Wesley & the JBs, "Blow Your Head"
12. David Seville, "Witch Doctor"
13. Trombone Shorty, "For True"
14. Paul Simon, "Run That Body Down"
15. Andrew Bird, "Fitz & Dizzyspells"
16. Bjork, "Who Is It? (Carry My Joy on the Left, Carry My Pain on the Right)"
17. The Police, "Voices Inside My Head"
18. No Doubt, "In My Head"
19. Talking Heads, "Radio Head"
20. St. Vincent, "Surgeon"
21. Peter Erskine, "Palle's Headache"
22. U2, "Miracle Drug"
23. Wilco, "Please Be Patient With Me"

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by

Migraine Awareness Month #5: "Do that to me one more time"

I missed yesterday's prompt, but I want to pick it up a day late, because it matters.

Today I want to talk to you about the health benefits of the funk.

Well, I have plenty of tried and true comforters: sometimes it is the heat pad, and when that feels wrong, it is the ice pack. Some days I go back and forth between the two, or put the heat pad on my neck and ice pack on my face.

But my favorite comfort measure is a mix CD that a friend made for me, called "Space-Robot Mind-Jacuzzi."

You see, this friend and I talk about music a lot, and for Christmas he made me a mix called, of all things, "Mix 2012." Great stuff on there, but it turns out there is magic in it too. One day I was listening to it in the car on the way to work, and before I knew it, a stretch of the songs had me transported to la-la land, ready to get off at the wrong exit, skip work, and head off into the mountains on a vision quest.

I snapped out of it and realized I was dealing with powerful stuff. How had this happened? Usually my commute just leaves me pissed off and tense--certainly not blissed out and transfixed.

Before my politeness could overcome me, I wrote to him and begged him for a migraine mix. I explained that I had made a mix of my own, but it had more of a tone of humor and desire to forestall the migraine--you know, preventative medicine. But more recently I had been listening to Dr. George Clinton, who advocates a dose of funk for what ails you.

Perhaps you are familiar with his prescription? "Good evening," he begins. "Do not attempt to adjust your radio. We have taken control so as to bring you this special show." About a minute into the song, he says: "Now this is what I want y'all to do. If you've got faults, defects, or shortcomings, you know, like arthritis, rheumatism, or migraines, whatever part of your body it is, I want you lay it on your radio. Let the vibes flow through. Funk not only moves, it can remove. Dig? The desired effect is what you get when you improve your interplanetary funksmanship."

So I wrote to my mixmaster friend and explained that my funksmanship was lacking, and could he send me some good medicine?

He came through for me.

"Space-Robot Mind-Jacuzzi" is not about headaches, and it is not purely funk. What it is, though, is a auditory happy place, where I can submerge myself and let the vibes counteract that horrible cortical spreading depression. I put it on my iPod--softly--and slip into its soothing water. The combo of robot and jacuzzi is key--the mechanical and the aquatic, waves of various kinds, doin' it to you in your earhole. For someone who does not himself suffer migraines, my mixmaster friend hit it right on.

I loved the mix from the beginning, but as I have listened to it over time, it has become my favorite migraine comfort measure. I do not listen to it at any other time, so its waters remain pristinely associated with migraine comfort. Well all right!

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by

Monday, June 04, 2012

Migraine Awareness Month #4: "June is bustin' out all over"

The continuing challenge of blogging with/about/under/within/despite/etc. migraine.

This tip applies in the summer, spring, winter and fall: Forgive yourself.

Every day, in small doses, before it can overwhelm you, take all that guilt you feel because you have missed a day of work, or not met a deadline, or had to bail on a plan with a friend, or had to miss an important family occasion, or had to miss the concert you were looking forward to (and had paid good money for tickets for), and on, and on, and on--and let it go.

In your rational mind, you know that sometimes plans don't work out.

In your rational mind, you know that you are not canceling on this plan to be vindictive, or because you do not love your kid, or because you do not think this project matters, or because you think money grows on trees. You are canceling because you have to.

In your rational mind, you know that you work extremely hard when you feel good, and you get a lot done. You know that you foreground your connection to family and friends when you can. You know that you do not waste money.

After all, you did not ask to have a headache disorder (or chronic illness, or whatever is plaguing you). You did not choose to feel bad. In fact, we all know you would choose not to have this thing.

So please: Listen to your rational mind. Be to yourself the kind and accepting person that you are to other people. Let things be what they are, not what you wish they were.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by

Sunday, June 03, 2012

Migraine Awareness Month #3: "Just shoot me now!"

Again, today, with the Migraine Awareness Month Blogging Challenge.

I want to play a bit with this idea of "worst."

In one sense, my "worst" trigger is the one I have not yet identified. I am relatively new to migraine, and identifying triggers can be very challenging, because it is so difficult to isolate variables. I have tried keeping a headache journal, but I have not managed to discern patterns. Add to this difficulty the fact that I have read and heard differing opinions about how much time can elapse between exposure to a trigger and its effect.

(Side note: I find the notion of "stacking triggers"--where something might not trigger a migraine in itself, but if, say, you are run down, or have not been eating well or otherwise taking care of yourself, or if various foods or whatever combine together, then WHAMMO.)

I suspect I still deal with a number of unknown triggers. In the realm of food, I have tried eliminating a number of things--alcohol, caffeine, gluten, dairy protein, egg protein. I have not yet tried the "elimination diet"--where you rule out almost everything and then add things back one at a time--but I may try that soon. But fundamentally, I have been unable to see a correlation between food and migraine.

(Another side note: one pattern I have recognized is that I seem to have almost seasonal phases--periods of pretty much daily migraine and then periods where even my usual triggers do not seem to matter. I have a hard time understanding the reasons for these phases: they do not seem to involve allergies, but is it weather? sunshine? patterns of work and play? Help me Obi-Wan; you are my only hope.)

Insufficient sleep is very bad trigger, in part because I cannot really control it. I do all the "sleep hygiene" things you are supposed to do, but I still often wake up around 3 a.m., my mind racing. The worst thing about insufficient sleep is that I sometimes get myself even more worked up, thinking about how the sleep I am missing might enrage the migraine beast. Fortunately, I have learned a number of strategies for coping with this problem--meditation, mindfulness exercises, "wise mind" exercises, etc. They help. Sometimes.

Other triggers that I think I have identified come with problems, in that I cannot really eliminate or avoid them. I seem to be sensitive to fluorescent light, and that is somewhat manageable in that I can avoid fluorescent bulbs in my house and keep the overhead lights off in my office. (I cannot, of course, avoid the fluorescents in the hallways, classrooms, and meeting rooms at work.) This sensitivity may also extend to my computer monitor, so it might be that extended computer time makes things worse. I cannot avoid the computer at work, of course, but I try to push away from it when I can and dim my monitor.

And as for many other migraineurs, weather seems to be a trigger, but I am not sure whether I can tell what the specific factor is. I think that fluctuation in barometric pressure is a trigger--most of the time. Humidity may be an issue. But then sometimes I feel worse on days when the weather would seem to be my friend.

Then there is driving, though again I am not certain whether driving itself is the problem, or whether it involves things that are triggering. (Many people agree now, for instance, that stress in itself may not be a trigger, but that situations of stress often involve other behaviors which may be triggers--such as eating poorly or irregularly, losing sleep, not drinking enough water, etc.) So is it the motion of the car? The position of my neck in the car? The fluctuation in atmospheric conditions that can come with going outside from air conditioning inside?

All in all, though, my "worst" trigger, in that it is my saddest trigger, is exercise. Again, not always, but frequently enough that I see a strong pattern--and indeed it was with swimming that I first started feeling the effects of migraine. I say that this one is the worst not just because everything we read says that exercise is good for you and should be a part of everyone's regular routine. For me it is the worst because I. Love. Swimming. Love it. For about twenty years now, it has been my favorite mode of stress release. I love being in the water. I am a really good swimmer, so swimming well makes me feel powerful, capable,   agile, fast. Old readers of this blog will know this to be true, because over and over again I would write about swimming. In fact, the car wreck that may have been the initiator of my migraine dealings killed my plans for a swim meet.

I hate wondering, before practice, whether I should go or not, whether this practice will be one that brings horrible pain. I hate wondering, during practice, whether I need to dial things back so that I can stay under the triggering threshold (which is, in itself, variable). I hate having to get out of practice early, because I can tell that things are getting bad. I hate wondering, after I decided not to go to practice, whether it would have been OK. I hate having this thing that I love so much, so tainted.

So I try other kinds of exercise, too, and sometimes they work better than swimming. I go for walks, and it is great to be outdoors, but I miss the drive and intensity of the pool. I ride my bike, but that does not bring the zen feeling of the water.

And frankly, as much as I can without risking being unable to go to work or something like that, I swim.

Saturday, June 02, 2012

Migraine Awareness Month #2: Tea for Two

Dear Readers,

Please try not to pass out, even though I am blogging twice in two days. I know. Maybe the Mayans were right.

I am continuing with the Migraine Awareness Month Blogging Challenge:

I find this a tricky prompt, I confess.

First of all, how do I narrow down this list? There are the family members, of course, who dismiss the reality of this disease (though I am also lucky to have many very supportive family members--and I am grateful for every one of you!) and do not understand why I cannot be at holiday gatherings. There are colleagues, who, bless their hearts, ask me if I am feeling better today, as if migraine were like a cold--something you get over. (I would be remiss, though, not to thank those colleagues who are supportive--thank you!) There are university administrators who do not seem to understand that sometimes I just cannot be at a meeting, or that I do not just "like the dark." There are friends who make me feel guilty when I need to cancel something at the last minute, again. (But, as before, I am constantly grateful for those friends who are not surprised or bothered when this happens. Interestingly, I tend to make more plans with them. . . .)

But how to choose just one?

I am also a little at a loss about how to explain migraine, since it seems so variable. As I read other people's "First on the First" posts, I am reminded again of how my experience with migraine differs from that of most. Since this difference means that I am often not in as much pain, I am ok about it. But since this difference also means that I have some level of migraine at most times, well, that I could do without. And it gets tiring to explain that my experience of migraine is not whatever the "normal" is that people have to expect. (But fundamentally, that's OK, too, since I am not a fan of "normal" and the way it is used to put people in neat boxes.)

More than anything, I often wish I could wear a sign around my neck that reads


and that that would be enough, that people would just trust me.

Because I am not trying to be halting in my speech, but sometimes my mind just goes blank, or everything feels wiggly, or there are distracting sensations in my brain, and it makes it hard to keep track of what I was talking about or get a full sentence out. And because sometimes it just is not going to be fun for me to join you for whatever fun thing we had planned, and I feel wretched for bailing on you, or letting you down, or leaving you in the lurch, or whatever. And because I would really like to be there for this meeting or class that I had committed to, but I am too nauseous, or vertiginous, or in pain to do it. And because even though I agree with you that it would be great to have a woman in that position, I am just not the right person to become Chair of our department, because I have a hard enough time maintaining my current responsibilities.

Whatever thing it is that I have done that seems disappointing, it is not that I wanted to do that, or that I do not understand that it leaves a gap or creates a problem for someone else. It is just that I am doing the best that I can, and I cannot quite live up to my expectations or yours today.

Besides, the problem with scheduling a date for tea is that I might have to cancel at the last minute.

Friday, June 01, 2012

National Migraine Awareness Month #1: First for the First

Anyone still reading this blog (hello? is there anybody out there?) will know it has been a while since I've posted. So long, in fact, that I have never posted about my dealings with migraine, something that seems to have started for me a few months after a car wreck back in 2009.

I guess I had sort of lost interest in writing here. And also things, and, you know, stuff.

But I just read that the theme of this year's National Migraine Awareness Month (NMAM) is "help make migraines visible!" and the group over at "Fighting Headache Disorders" has issued a blogging challenge for the month. So I figure, what better way to make migraine visible than on a blog with no readers?

So I'll post this month about migraine. Probably not every day, because not every day's challenge speaks to me, and I don't know if I want to write about migraine for 30 days in a row. Living with chronic migraine is enough: do I have to talk about it every day?

But all for the cause.

Today's prompt is to write about your first migraine--what it felt like, if you knew what it was, what you did, how you felt.

This is an interesting question in itself.

When I started experiencing migraine--and I use that word in the singular with no article, for a reason I'll explain in a second--I had no idea what it was. My first experience was hardly what seems like classic migraine. I had no headache. I had no visual distortion. I had no nausea, light-sensitivity, sound-sensitivity--none of the things I had heard go with migraine.

Instead, I had these strange sensations in my arms, legs, and face, like I was losing feeling in one half of my body. Or sometimes it would be just my legs. Or a strange cold sensation on the inside of both knees.

I had had some low back pain at the time, so I was in physical therapy for that. When I would do the little strengthening exercises, suddenly my arms would shake uncontrollably, or I felt unable to lift something I should have been able to lift.

To be honest with you, I had no idea what was happening. Was this the product of my accident? Was something wrong with my neck? Did I have MS, and were these the fist signs?

Now I am reasonably sure that these things are part of migraine: I often have numbness and tingling on the right side of my body during an attack. Other days, I just have the numbness but no headache. And, I'm sorry to say, exercise is one of my most reliable triggers, which means that my beloved swimming now is able to cause me tremendous pain.

I'll write more about these things as the week goes on, but before I wind up for today, the explanation I promised you about terminology: as I said, I don't tend to call my experiences "migraines," or "a migraine"--as in, "I'm having a migraine" or "I experience 4-6 migraines a week." My experience is that migraine is almost always with me, in some form or another. Luckily, it does not usually involve a horrible headache, but rather some amount of sensory distortion, and often in an amount that I can tolerate reasonably well. I have learned that migraine can appear in many ways, and can be pretty variable, even in one person--and when you are talking about a range of migraineurs, the variety can be extreme.

I prefer to talk about "migraine" as the whole spectrum of neurologically induced haywire that this syndrome brings with it. The range of symptoms can be scary--especially when a new one pops up for the first time. It is hard to know what does or does not fall under the migraine umbrella. (Is this vertigo part of migraine, or is it something else?)

For me, "having a migraine" implies a distinct beginning and end. For some people, that implication may be appropriate, as I know that some migraine attacks have distinct phases and follow patterns. Mine rarely do.

Anyway, this variety is one of the many complicated parts of this disease, and likely I'll talk about this again this month.

For now, I'll sign off by saying that if you have any migraineurs in your life, go easy on them.