National Migraine Month

June is National Migraine Month.

Educate yourself. Help a friend who suffers. Treat yourself better.

why have i been quiet?

My last day of work was May 1st. I moved to Ohio at the end of May, and have been enjoying not going to an office for 8 hours a day, 5 days a week. Oh what a difference a little freedom makes. Aside from one party foul migraine last month, I've been pretty much migraine free since work ended. Have I had headaches? Yes. Close calls? Yes. But thanks to a free schedule, I have the flexibility and freedom to troubleshoot the head pain, find the triggers, and treat myself appropriately.

This is somewhat of a wonder because I am currently weaning myself off my antidepressant, Zoloft. I started the second week of May, and now I'm down to 50, as opposed to the original 200 dose. This is huge, and quite frightening for me. I haven't been without this medication since 2009--so far my guts have been a mess and I've been much more quick to get to tears. I'm working hard on using my coping mechanisms and getting through it. I listen to my body. I follow a healthy diet, avoid my triggers, and work out every day.

It's nothing short of a miracle to have 1 migraine in over 1 month.

In a way, being more migraine-free brings on a whole new host of worries and fears. To be honest, there is the worry that I will need to live more fully. I will always feel like I live a half-life with these things--I will probably always be an easy target for the head pain. I will probably always have my triggers and anxieties when it comes to chronic pain. But to realize an opportunity to live a bit of a more fuller life? It's thrilling and very, very scary.

But yes mostly thrilling. More soon.

long time, no post

I haven't updated this blog in a while. I wish I could say it's because I haven't had any migraines but that isn't true. The past few months I've been hit hard with head pain in tandem with my cycle--it starts a few days before my period starts(a few days before that I start feeling very depressed/achy/anxious...it took me a surprisingly long time to connect all of the dots on this one). The migraine will flicker on and off for a week from its start date. Last month and this month were both giant pains in the ass(and head). I end up bedridden with the spins and superstrong nausea, sensitivity to light and smells.

I struggle at times to explain what it feels like to have a hyper-sensitivity to the elements when I have a migraine. It truly does feel like the world is designed to be out to get you. Yesterday I left work early with the migraine rearing its head again, and on the bus a woman sat down next to me who had perfume on that instantly upped my head pain to a 9 or 10. Or even waiting at the bus, when it seems like every other person is a smoker and the wind is blowing it right in my face. Smells of food cooking or exhaust seem to pull the vomit right from my stomach. The world becomes overwhelming. I just want to run and hide.

Today I am feeling more and more like myself. It is ridiculous--the difference in me when in pain vs. when I'm not in pain. Everything is so much more complicated under the influence of pain. I need to wash my hair and clean my apartment AND prepare for two shows this weekend--I'm trying not to overwhelm myself by tackling it all tonight, but I do worry that I may not have another chance(what if the migraine comes back tomorrow night, for example? I hate to think these things, but have to).

My diet: I have strayed from how strict I was in past months in regards to my intake. I still avoid fermented foods and MSG when possible. The soda habit is STILL kicked, which is awesome--I've lost probably 5 to 7 pounds from abstaining from that alone. I've been lapsing on my smoothie game but hope to get back to it asap.

Supplements: Every day I take: Vitamin C, Vitamin D(especially now that it's winter), BComplex, Butterbur, Magnesium/Calcium. I am still a firm believer in this combination cutting down on the frequency and severity of my attacks.

I've had less attacks in the past 6 months, but the attacks are more intense in their own ways. Perhaps because I have less of them? Maybe because they seem to circle around my hormonal monthly rollercoaster? Maybe. It is still the pain I hate most in my life more than anything.

More soon.

1.5 dayer

Sunday I played my soccer game with a migraine that was steady in its growth, until post-game when all hell broke loose upstairs. Driving was a pain in the ass but I made it home in time to truly "die" in the comfort of my own bed with the air conditioning on and the cat by my side. She always knows when I'm sick, it's true. It didn't take me long to get the trash can and throw up. Sleep was crazy. Lots of dreams and turning. Heavy-cold washrag on my head for the duration, left side of my head(where the pain was) pressed up against a pillow. Pressure feels good, usually. This time it felt good but it also made me extremely nauseous. Plus that thing happens where I lay too long on that side and my left ear starts to hurt.

The pain was there when I woke up for work so I had to call off. I needed the day off for the writing retreat at the end of the month but there was no way I could get to work in that condition. I slept again after half a cookie and a melatonin. I slept until 1-something in the afternoon. This is about when I started to feel better, at least well enough to walk around again. 3 to 4 hours after first waking I was able to make pasta for breakfast/lunch/dinner. I still feel pretty gnarly so I took another melatonin and I'm going to go to bed. I hope will all my might that this is gone tomorrow. I can't miss anymore work.

I didn't have to deal that much with feeling isolated this time--I wouldn't let myself. I worked on turning my mind whenever I thought about being alone through all of it. When I felt sad today(which was often), I just reminded myself that the sadness is fallout from the pain and that it too will pass. That it isn't really that real or justified. I remind myself of reality.

I look around and wish I could clean up the apartment or do some writing but I know recovery is most important right now. I know that these things will get done and it will be okay.

snapshot

(a Monday)

At the bus stop shifting my weight from foot to foot, constantly fidgeting, head leaning to the left, trying to read the book in my hands but failing. I am fighting for my composure, praying for my bus to appear. I have a migraine and I want to go home. I made it all day at work and now it's time to truly die.

Or no, maybe not death. More like I am on my way to the gallows, not yet gone. As if I'm leaving to go abroad for months or years and with each hour passing I am saying goodbye quietly to everything I know to be familiar. I am about to spill into the looking glass--this is our moment before the leap.

I look up, panicked. Someone is smoking nearby. The scent takes my head in heavy palms, cracks it in multiple places before shoving it back down on my neck. A smell that goes right to the pain and squeezes it. I try to move without making a scene. The sick part of me wants to confront the smoker but there is no use. They have no way of knowing.

And on the bus. I move seats three times on the bus just to escape triggering smells. Two are perfumes, one is stale cigarette and booze. These smells bring tears to my eyes. Life feels completely unfair. Everything in the world hurts me. I do not understand it. In my growing migraine delirium I start to assume that these people were sent to be my obstacles, life's cruel way of handing me much more than I can hold. When the truth is these are normal scents for the most part, there on a daily basis but never noticed until they become trouble. How snobbish a nose grows from well to sickness.

As the pain grows and throbs and curls and spits on the left side of my head, I try to construct descriptions. What is this pain exactly? I think of Andrew Levy's book, how exact he manages to describe attacks. At least somebody can say it. The pain is...blank space. Wherever the pain is, there's the blank. But the blank, of course, isn't blank. The blank is hot white. It is looking at the sun. It is all I know of storms, crammed into a segment of head. It is everything dark and wrong. It isn't me. It turns me into a shadow of self. The wrong side. Hence looking glass. It feels like madness--drill bits, canker sores, infection, mallets, nail beds, banjo pluck of nerve endings, the removal of balance, speech, movement. The idiot company of nausea, the clinging to things. It takes me away. It brings me back. This happens until I start to wonder which is normal. I don't understand being homesick for both.

white nailed on the wagon

Life's been good. Really good. Spring is here, and that always helps to boost the mood. And a boosted mood means less tension emotionally and physically, which means I can relax more, which means less pain. Which is a very very good thing.

I am still taking my supplements every day. Still reading the label of everything I ingest. This month I fell off track a little bit, in regards to taking care of meals myself. I get busy and/or I get home late and feel too lazy to cook meals ahead of time. This needs to change. The guilt of it is already eating at me. I haven't had a smoothie in a week. But if one falls, then one must simply get back up. So definitely starting the day off with a smoothie tomorrow.

Earlier this week I woke up with a pretty gnarly migraine. I knew I couldn't miss work--I was filling in for the receptionist and I'm out of time off for the month. At first I was really worried about getting to work, and making it through my day AND through my plans in the evening. I decided to give the whole "don't panic" thing a shot and breathed my way through the early a.m. I suited up for the ride and took the bike into work instead of the bus. The fresh air and exercise is often a wonderful help when it comes to my head pain. Blood pumping, lungs filling. It works for me. Before I hopped on the bike I took an Aleve. I drank water throughout the day and avoided all my food triggers. And I couldn't believe it: by 3pm I had shoved the pain completely out of my body.

That simply...never happens to me. If I have it, then I have it. It's hard for me to override the progression once it starts...especially if I find myself waking up with a migraine. But I did it.

I am feeling like a different person these days. I had a bunch of dead hair cut off my head and it feels pretty damn good. I've also been writing a lot these past few months...the truth is, with less migraines each week, I can get more done. It truly feels like I am blessed with extra days. I used to never have a Monday night wtihout some sort of head pain. Now, for the past 2 weeks I've been able to get out and do things on that evening. I find myself with all of this extra time and...opportunity. I can commit to social things, see people I adore, and workout every day like I want to. Less frequent pain means I have more free time, and it also means I am generally happier and less tense. My anxiety is starting to feel much more manageable. I fear these suckers so much...I'm not surprised in my new found level of calm.

My next goal is to find a therapist that I click with. I'm ready to tackle the emotional triggers. I've been in a push-me-pull-me state with it for most of my life...now I feel like I am ready to let all of it go. Getting my hair cut last weekend really triggered something in me in regards to being lighter. That lightness. I deserve it. I want it. I'm ready to fight for it and make it mine.

I have also started to reread A Brain Wider than the Sky, by Andrew Levy. I love ths book so much, more than any other text/literature written about migraines. I am maybe 3 pages in and already I have had tears in my eyes while reading. It feels like a miracle to read about this illness in a language that I can understand and relate to.

Bottom line: I am feeling less and less like an illness and more and more like a person. Someone that can function and can make plans AND take care of myself. So far so great.

remember this, self.

Today marks one week with no migraines.

If you were me you would find this slightly amazing.

I'm following my diet, taking my supplements, and reducing my triggers. And filling my life with more things I love and less of what stresses me out. It's a simple formula. And it's working.

I can't even...yeah. I'm happy.

on writing about it.

Going through old journal/writing archives. I found this entry from March, 4 years ago. I definitely still feel this way, though I write about dealing with migraines more often. It's still difficult, but that's alright.

March 31, 2009
So I heard a poem tonight with an all too familiar ring to it. The kind of thing that could have spilled from my own mouth. Not exactly, but pretty damn close. Immediately after the poet read her last piece for the evening, I jumped up and went to her, squishing past the thrones of students to touch her elbow so she would turn to me. I started in right away:

“Hi, I enjoyed your work immensely. Do you suffer from chronic pain?”

She squints at me, because I’m talking fast and direct. “Pardon me?”

“Do you suffer from chronic pain? I thought that one poem…”

A light appears, she nods. “I get migraines, yeah.”

“That’s what I thought. I’ve had chronic migraines for twenty years…”

And I’m kind of gushing at this point, trying to express how much it meant to hear a poem like that. I admit to her how scared I am to write at length about it, even more petrified to share it with others on a microphone. She nods and seems to understand. I say that much to her and then start to pull away, afraid that I approached her with too much. I just couldn’t hold back my feeling of…relief, I guess? To hear someone say it. To be encouraged and inspired by that. Her poem made my eyes well up, because I do not feel that brave yet, or else I am and I just haven’t found the means(or the time, or the space, or something) to tap into it yet.

I have so many feelings about it. It’s all I could think about on the ride home. It was so nice to hear someone else share perspective on the experience. It isn’t something people really talk about because I think sufferers build themselves to protect it, and there is a weird shame/embarrassment involved with being in pain that I can’t even begin to assign words to. Hearing one person’s poem about it on a Tuesday night is not enough, I know that much. I’m glad I could relate, and I’m glad that it moved me and I’m content with my approach to her afterward. But my story and mine, it is still trembling in a weird self-contained casing just under the surface, a raw egg dropped in a pan with the heat still off. Just waiting there slightly shaking. It’s not going to speak itself.

I tried once, at an open mic not too long ago. It was a weird situation. I didn’t feel heard. It’s a two part feeling. One, I do not feel that I expressed it to my full ability. I’m still working on that. Two, I think it wasn’t necessarily an issue of people not listening, but more about me paying more attention to what happened in the air after my sentences. In some way, a way that I cannot explain, I expected the sky to split. I expected the earth to take away my feet. In some tiny weird way, maybe I expected that release to be ultimate.

I have to realize that speaking about it isn’t going to absolve me of the illness. It isn’t going to take it away completely. That isn’t the aim, it isn’t the bulls eye. Speaking out is about awareness, wrapping my own head around it, letting other people in when sometimes I’d rather push them away. These are hard things to admit. When all you want is understanding, why would a person aim to be separate, for distance? It’s all a part of grasping how I feel about it. I seek a personal relief, and it doesn’t have to be(and isn’t going to be) grandiose. Maybe in segments and fractions and glimpses, and I’m okay with that. I’m beyond okay with that.

stupendous

This is the first Monday in many weeks...maybe even months...that I did not leave work with a migraine.

Instead I came home, worked out, made dinner, cleaned a bit, and did some writing.

Honestly, it was like getting time added to my clock. A mighty pleasant surprise. So thankful to spend a Monday evening NOT in pain.