Friday, June 29, 2012

NMAM, Days 22, 27, 29

I'm really behind on this daily blogging challenge. My life has been stressful lately, so stressful I'm having trouble writing about it without ending up in tears of frustration, which my head reacts super violently to, so I'm going to skip it for now and instead give you a few answers to my favorite prompts of the last several I've missed.

Migraine Awareness Month #22: "The Game Changer." Tell us about a time your plans changed due either an unexpected Migraine or an unexpected Migraine-free experience.

The real game changer was the sudden and all-encompassing introduction of migraines to my life. They started rather quickly and within months had rendered me incapable of withstanding direct or bright light, loud or competing noises, or nearly any artificial smell. My life changed totally in 2007, and I went from active and capable to nearly housebound and dependent on loved ones and friends for help. It's taken years to adjust and sometimes it still knocks me sideways when I think about what my reality has become. Every possible future I'd imagined for myself, rich, poor, married, alone, a horde of kids, child-free, in the city, on a farm, I never saw myself in pain, with significant disability, so this has forced me to reconsider everything I thought about what I want from this life. Do I really want the picket fence, kids and a yard? Do I want to be a photographer, do I want to travel, do I want to start a retirement fund? It's all different now, with migraines. After five years, the daily realities are no longer very remarkable, but the big picture of my life is still unclear. Possibilities and limitations are constantly being reevaluated.

Migraine Awareness Month #27: "In my Head and Heart." Who inspires you to keep trying and not give up, despite your Migraines?

I have a short list of people who really inspire me, who keep me grounded and keep me going and keep me from going off the deep end. They include, but are not limited to, my partner, my brother, my mom, my friends, and my dog. These people (and/or dog), whether they know it or not, keep me from giving up when the pain or the depression start feeling like forever. They inspire me to always try harder, to make my life better despite my health issues. Life is what we're given, what we're hit with, and what we make it. I want mine to be filled with the people I love, even if my head does hurt like hell the whole time.

Migraine Awareness Month #29: "More Often that Not." Today is Chronic Migraine Awareness Day. People with chronic Migraine have a Migraine more often than not. Think of and share a random act of kindness that you could do for someone with chronic Migraine.

Since I have chronic migraines, I'll share a list of things that someone could do for me.

1. Housework - I HATE spending all my energy cleaning my house just to have to do the same thing as soon as I recuperate. Sometimes I feel like the dishes are all I do. It's so depressing. My partner is an excellent caregiver in many respects, but he is not a tidy person and no amount of nagging will every make him be the neat freak I could really use in my life. If I could get some in-home help, I would have a lot more freedom.

2. Cash - I'm broke, all the time. It's exhausting and scary.

3. Anticipate Triggers - People who avoid scented products, who warn me when a destination will be loud or bright, who think of me when deciding where to sit in a room, those people are golden to me. And if you always make sure to turn off your radio when I'm in the car, I'm probably a little in love with you.

4. Be Patient - I can't control a lot of my life, and I adore it when people who are waiting on me, or who I've cancelled on again, or who are finding me less than charming due to migraine just let it go and wait it out and forgive me every time. LOVE.

5. Don't be weird about it - If I'm ill, there's no need to cover for me with embarrassed-face, or fuss over me nervously, or ask me a million times if I'm ok. However, the offer of water, shade, and quiet company would always be appreciated.


Thursday, June 21, 2012

NMAM, Day 21

Migraine Awareness Month #21: "Shaking in My Boots." What's your biggest Migraine related fear. How do you cope with it?

I'm afraid of being pointless, useless and of wasting my life. I'm afraid of being beaten down by the pain and isolation and not being able to get back up. I'm afraid that I'll never get to do the things I want to do and I'll die unfulfilled, alone and desperate.

So, I try my hardest at school, though my progress seems imperceptible at this point. I make a point of spending time with my favorite people, even if it lays me out for a week. And I try not to dwell on my fears because while being afraid might be motivation for not sitting around pouting, it can also be disabling in itself. I have some anxiety attached to my migraines now, which is a futile, self-defeating kind of fear. Anxiety is worse than pain sometimes, because it feels like I should be able to control it. The logical half of my brain doesn't suffer fools, and feeling so afraid of the sun that I cry for an hour and never end up leaving the house makes me feel incredibly foolish, even while it's happening. So, I've been training myself not to dwell on negative thoughts and when I start feeling those twinges of panic, I try to talk myself down and can usually stop the tailspin before it becomes a full-on anxiety attack.

I'm getting better and better at overcoming fear, and it's an amazing feeling. Every time I do something that scares me, I grow a little bigger inside.

NMAM, Days 18-20

In this edition of the NMAM blogging extravaganza, we tackle the subjects of dreams and doctors.

Migraine Awareness Month #18: "The Price Is Right." What one thing would you do for the Migraine community if money were no issue.

I'd fund research until everyone had effective treatment. That is all.

Migraine Awareness Month #19: "The Match Game." Describe your perfect doctor to treat your Migraines.

My ideal doctor is open minded, innovative, empathetic, and meticulous. She would have suggestions for me, and referrals, and sneaky ways of getting services my insurance won't cover. She'd allow me to have appointments via phone or internet, or she'd make house calls when I can't get out. She'd have a totally scent-free office and her employees would always talk quietly and dim the lights when I was coming in. She'd have my interests at heart, instead of her bottom line and she'd go out of her way to make sure I'm getting the best treatment possible.

Migraine Awareness Month #20: "Run, Forrest, Run!" Describe the approach you think is best when it's time to move on to a new doctor.

I've tried out a few doctors and I've found leaving isn't that hard for me. I start researching for someone new and when I find a good one, I give them my old doctor's info so they can summon the records. I've given a breakup speech, but only twice, and I usually don't find it's necessary to announce my intentions. My actions are pretty clear.


Wednesday, June 20, 2012

NMAM, Days 16 & 17

Get out of my way, and my favorite father are the subjects of this NMAM post.

Migraine Awareness Month #16: "Lead, follow, or get out of the way." Which role fits you and why?

I'm not much of a follower, unless I'm following something that passes my personal litmus tests, and even then, I'm always kind of on the fringes of things. Since I'm a rather unwilling leader when put in the position, I suppose that makes me a get out the way type. I do like to try new things and don't much care for the status quo, unless I can personally see the merit, but I think I'm more of an "Excuse me, I need to get through" type, since get of the out the way seems kind of rude.

Migraine Awareness Month #17: "Father Knows Best." Some understand Migraines, some don't. Write a letter to your father or the man closest to, and talk about your Migraines.

My biological father doesn't know I have migraines, as far as I know. We haven't talked in a long time. My step-father mostly ignores it. Lately he's been more generous with keeping music low or off and is totally supportive about my dietary explorations. But, he's also made some really shitty comments in the past and when I remember them, they still hurt.

I'm trying to keep my emotions on the happy side right now, depression is lurking just behind my chair and if I start thinking about things that make me sad or mad, it's likely to take the opportunity to spread that sad/mad all over the place and make a real mess. Therefore, I'd rather talk about my amazing partner, the unbelievably supportive man that I love. He is the father to our dog-baby, after all.

When I wanted to start school again, he encouraged me every step of the way, sometimes literally. When we got the opportunity to move to the mountains, even though it would demand a lot of time and work from him, he jumped at the chance and convinced me, because he knew what a change of environment would do for me.

He is one of the very few people in my life who totally understands migraines, and what they've done to me. Besides being a witness to the last five years of my life, he gets the occasional migraine himself, and he gets cluster migraines every few months to years. He's been disabled himself, though for his back, so he understands what it is to be limited physically and what it is to endure chronic pain.

He watches tv with earbuds, so the sound won't hurt me.

He makes me food when I'm too sick, no matter how he feels himself.

He provides shoulder and back massages when I can tolerate them.

He's the most compassionate person in my life.

I'm lucky to have him.


Monday, June 18, 2012

NMAM, Days 13 & 14

I've been struggling for the past few weeks, and my total drop-off in the daily posting challenge is evidence. Thus begins the string of catch-up posts. Better late than never.

Migraine Awareness Month #13: "You Are Beautiful." Write yourself a love letter. Tell yourself how wonderful you are. Remind yourself of the things you have accomplished despite Migraines. There are times when we need to be reminded of the good things about ourselves that others see that we may have missed.

I'm actually fighting depression pretty hard right now, which is making any attempt at writing myself a love letter impossible. I look at myself and I'm not seeing anything good. The darkness comes and goes, but even when it's gone and I'm productive and smiling, I still drawn a blank when I pull this prompt up. The Bloggess has said, repeatedly, that depression lies. She's brilliant and funny and is also really open about her anxiety disorder and battles with depression. She's inspired me to try again, so here's my sort-of love letter to myself, complete with the lies my brain tells me in parentheses.

Steph, there are some things you need to remember. (And some things you should work on forgetting.)

I'm a good writer. (But nothing special, I'll never be successful at it.)

I'm a good photographer. (See above.)

I'm funny, and witty, and smart. (But I'm also sick, stupid, dull, and angry, so who wants to be around that?)

I've got a partner, a dog, a family, and friends who care about me. (See above.)

I'm back in school and doing well. (Only one class at a time? And it's a struggle? Pathetic.)

I've found a medication that increases my quality of life, without significant side effects. (What am I, a pothead? Get a real treatment, yeesh.)

I live in a quiet place than minimizes my triggers and allows me to be more active. (I'm still not trying hard enough.)

You need to let go of those negative thoughts; they aren't helpful, and you don't deserve them.

Be happy,


Writing this all out was actually really therapeutic. Depression not only lies, but it's a total asshole! It was good to separate the truth from the negative thoughts and feelings that aren't necessarily coming from a balanced place. I would never allow a real person to be this mean to me, I need to stop taking it from myself.

Migraine Awareness Month #14: "Live Long, and Prosper." Come up with a short, simple phrase or sentence that could be used when saying "Hello" or "Good-bye" that expresses your wishes for fellow Migraineurs.

Peace. It's perfect. Be at peace, or be with peace, or be in a peaceful place, in life or in your heart, and you can get through anything.


Tuesday, June 12, 2012

NMAM, Days 10-12

I'm not doing so good with the daily posting for this NMAM challenge.

Migraine Awareness Month #10: Name the Spokesperson. Choose any celebrity to represent Migraine (whether they have Migraine or not) who would it be and why?

George Clooney. Everyone loves him, and whenever he talks, people listen like he's a prophet. And Hillary Clinton, because I love her and want her on my side, always.

Migraine Awareness Month #11: "Say What?!" What's the most ridiculous thing ever said to you about Migraines, who said it, and under what circumstances?

"Get over it."

"We all get headaches."

"We have to make accommodations for you now?"

It's frustrating hearing this type of dismissive, patronizing, disrespectful language coming from people who are supposed to care about me, but it happens.

Migraine Awareness Month #12: "Let's Do the Monster Mash!" Choose a movie monster that reminds you of your Migraines and tell us why.

Frankenstein would be a good migraine monster, for the stumbling, groaning, lurching, mumbling creature he was in the movies. Zombies would fit too, for the same reasons. I joke that I'm a vampire, with my aversion to sunlight, but garlic is one of my favorite foods, so maybe not. Dr. Jekyll and Mr Hyde is also fairly apt because when certain triggers hit me the right way, I can go from smiling to snarling in seconds.


Saturday, June 9, 2012

NMAM, Days 7-9

Migraine Awareness Month continues, and in this post I tackle questions from days 7, 8 and 9.

Migraine Awareness Month #7: List Topper. There are lots of myths and misconceptions about Migraine. Which one tops your list as the biggest and most common? What can we do to get the truth out there?

When I tell people that migraine is more closely related to epilepsy than headache, they are always surprised, even many people who have migraines.

Migraine Awareness Month #8: "Let there be light." Most Migraineurs have issues with light sensitivity. What do you do to cope with it?

I'm dependent upon sunglasses and hats, and I avoid painful lighting when I can. My preference is have lights face the walls and ceiling, so I never see a bulb. Even diffused with a frosted cover, direct lighting is horrible. Even with a hat and sunglasses, lights that flicker are difficult for me to tolerate and fluorescent lighting makes me yawn incessantly, so that's an interesting early-warning to vacate the area. The sun itself is pretty tolerable as long as I'm hat and sunglassed up, but the glare off cars and windows and the strobing effect of the sun passing behind trees and buildings when driving are enough to send me into a migrainous tailspin within seconds. The light isn't my friend.

Migraine Awareness Month #9: "Day Dream Believer." Describe your dream day - without a Migraine to hold you back.

I answered this question during the HAWMC, here, so I'm going to talk about something a little different, my dream for myself, with migraines. I've been doing a lot of thinking about how to make my life a great one, even with chronic migraines. I'm going to school, slowly but surely, and if I keep going, even at my snail's pace, I'll eventually earn a degree. I need to make that degree matter. I need to learn something that will keep me fed and warm even when my migraines have me knocked into the ground. My dream is to be comfortable, financially, so I can stand on my own two feet, even when I can't open my eyes.

Wednesday, June 6, 2012

NMAM, Day 6

Migraine Awareness Month #6: Name That Tune! Choose a theme song for Migraine disease or your headache disorder.

At first I thought this prompt was going to be impossible for me. A song about migraines? I even googled "headache song". Then, a sudden inspiration hit. I can't explain it, but I suddenly thought of a song that perfectly sums up my feelings towards my migraines, and well, pretty much everything and everyone in my life. It's not exactly a headache song, but it's everything I'd sing to my migraines, if they were receptive to song.

"You Don't Own Me" by Lesley Gore

You don't own me, I'm not just one of your many toys
You don't own me, don't say I can't go with other boys

And don't tell me what to do
And don't tell me what to say
And please, when I go out with you
Don't put me on display, 'cause

You don't own me, don't try to change me in any way
You don't own me, don't tie me down 'cause I'd never stay

Oh, I don't tell you what to say
I don't tell you what to do
So just let me be myself
That's all I ask of you

I'm young and I love to be young
I'm free and I love to be free
To live my life the way I want
To say and do whatever I please

A-a-a-nd don't tell me what to do
Oh-h-h-h don't tell me what to say
And please, when I go out with you
Don't put me on display

I don't tell you what to say
Oh-h-h-h don't tell you what to do
So just let me be myself
That's all I ask of you

I'm young and I love to be young
I'm free and I love to be free
To live my life the way I want

And, the video:


Tuesday, June 5, 2012

NMAM Days 2-5

It's still National Migraine Awareness Month, and I've compiled the last few days' prompts for the NMAM challenge into one post, so here we have some tidbits on talking, triggers, being prepared, and coping.

Migraine Awareness Month #2: Tea for Two. If you could invite someone (any living person) to your home for tea for the purpose of explaining Migraine disease to them so they would truly understand it, who would it be and why?

I thought about this prompt for days. Would I choose someone political, someone powerful, or someone close to me who doesn't understand like I wish they would? I think I'd rather just pass the responsibility to someone else. I'm tired of explaining myself; besides being tedious, all the talking hurts my head.

Migraine Awareness Month #3: Just shoot me now! What's your worst Migraine trigger? Can you avoid it? How do you handle it?

Light, noise, smells. Everything triggers me. I wear sunglasses and hats, earplugs, carry mints to try to cover perfumes, but these only dampen the severity of their impact, and they only buy me time. Without a hat, under fluorescent lighting, I'll only last a few minutes, in the sun without shades, I have seconds. Perfume is pretty deadly, the mints are more a comfort than a real help, and loud or competing noises can render me useless faster than a neurologically normal person would notice having to raise their voice. My life is difficult, and restricted. I'm housebound half the time, but since I've moved out of the city I'm able to get out more, with shorter periods of migrainous repercussions. Less triggers, less problems.

Migraine Awareness Month #4: "June Is Bustin' Out All Over!" What's the best tip you can offer others for having some summer fun despite Migraines?

Be prepared. I bring two bags with me whenever I think I'll be away from home for more than a few hours. My main bag carries my wallet, medications, camera, chapstick, and the like. My second bag holds a sweater, an extra hat, water, extra water, ginger ale, an umbrella, and something to occupy me, like homework or a book. I plan ahead and pack well and I ease my discomfort as well as possible. Though, I'm always better off if I can just stay at home, in the quiet, cool shade.

Migraine Awareness Month #5: "Do That To Me One More Time." What comfort measure do you find helps you enough during a Migraine that you go back to it again and again, and how do you use it?

When my head really hurts and I can't medicate out of it, I tend to turn to sci-fi shows and online games to take my mind away from the pain. I listen with the volume on low, or off entirely. I avoid anything with sweeping camera movements or flashy animations, as these can trigger motion sickness and more migraine fun, like slurring my words and stumbling. But, it takes my mind of the pain and keeps me away from anxiety and depression, both which pile on my when I've been stuck inside for too long.


Friday, June 1, 2012

#NMAM - Help Make Migraines Visible

Today is the first day of National Migraine Awareness Month. There's another one of these blog-a-day challenges going on, so I'm going to be answering some prompts throughout the month, though definitely not daily this time. I'm immersed in school and feel like I just finished the Health Activists Writer's Monthly Challenge and while I absolutely want to promote migraine visibility, I'm so tired. So, I'll do my best here, and no one judge me.

1. Your First for the First. Share the story of your first Migraine, what it was like, if you knew what it was, what you did, how you felt.

The first migraine I can remember was when I was a child, but I have no idea how old I was. I was with my parents in a rowdy bar/restaurant that was filled with people. We'd been out all day in the sun, on motorcycles, and I was exhausted. I remember sitting in the booth and feeling a little dizzy and an increasing headache. All around me, the noises started to go weird; the music from the jukebox, people yelling and laughing, and the clinking of dishes as everyone around me ate and drank merrily felt like every note and tone was vibrating my body. Then, I just couldn't keep my eyes open anymore, so I laid down on the vinyl bench, covered my face and went to sleep.

I have a few more memories of migraine-like headaches, and a short stint of chronic headaches in high school that left me joking with everyone I knew that I must have a brain tumor. Teenagers make the most hilarious jokes, I know.

On the schoolbus, I was one of two students who didn't speak spanish as a first language. I've picked up a bit over the years but the only sentence I had my friends teach me outright was, "Mi cabeza va a explotar." Forgive my spelling if it's not correct, but the phrase means: My head is going to explode. I guess headaches have always been a problem for me, I just didn't have the knowledge to call them migraines until they went nuclear and demanded the title.

I always thought it was just a headache, take a pill and be done with it.

If only.