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.

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.

that old mortal feeling

Last night the migraine arrived after much quiet knocking. At least it had the patience to wait until after work and some miles on the bike. I went to bed at 11 feeling awful, and woke up at 3am to puke. I woke up every hour til 8am doing the same thing. Puking my guts out.

I'm about to go to bed and I'm still kinda recovering--I feel a little disoriented, a little stumbly and forgetful. These things pass. Of course the real bit I'm struggling with is how I feel emotionally after being migraine free for 10 days. That is a long period of time for me. I wasn't feeling "cured" but I was feeling alive. Alive. I felt limitless, but not reckless. I can't describe that type of amazing. Obviously I feel the sting after being sick last night.

A pause here to kind of explain my migraine recovery. The first day after a migraine sucks in its own special way. Total newborn status. I'm exhausted, uncomfortable, and more often than not I am still in some pain. Emotions are pressed up to the surface. This specific kind of melancholy while the serotonin fills back up. At the same time it feels like a miracle to sit upright, to walk, to engage in a conversation. That shit feels incredibly surreal after feeling what feels like dying. But then there you are, the other side.

All this to say I'm okay with it. One migraine in ten days? That's huge. It's getting better. I'm staying steady with my diet and exercise. My butterbur arrived in the mail on Saturday so I've added that to the arsenal. Super B, magnesium, butterbur daily.

This migraine wasn't as awful as it could've been(even though throwing up so much always sucks and makes things a bit more difficult...as in ever throw up while your head is being pulled apart?). The thing that helped me the most was staying calm. I hate getting sick but knew it was going to happen. All I could do was make myself as comfortable as possible and go with it. When I couldn't get quite over the edge I would just do a neck roll and for some reason that would trigger the lurch in my stomach perfectly. I'm proud of myself for staying calm. I didn't cry and I didn't feel helpless. Today I recovered by doing what I had to do--forced myself to eat a little something, slept and slept and slept. But I didn't baby myself--as soon as I could, I got moving. The sooner I caught up with my "normalcy" the better I felt emotionally. You get up, you get back in the game. While I've always known it and believed it, that attitude is fairly new to me with this stuff. I feel much more in control since making changes. And last night's pain can't take away those 10 days. Onward.

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.

scattered complaining

Another discovery with this new diet of mine:

if you run out of the right stuff to eat, go back to the store and restock.

Simple, right? Not so when you're on a tighter than tight budget. This was my mistake for the past week. Not having the right stuff in my pantry meant cutting corners, which meant eating more of the "not right" stuff. Which, you know, end result: stupid headaches. Migraine, headache. Refrain refrain. Add the cycle of hormones to this and boom: first class in hell.

I have no one to blame but myself for this. I'm kicking myself hard for it, despite my best efforts not to. Tomorrow I go to the grocery store and properly redeem myself.

It's the guilt. The guilt, guilt guilt. Bonecrushing sometimes, the shit we pile on ourselves for not being strict enough, for not being able to follow through, etc etc. The migraines pull all of it to the surface. How can one feel guilty for being sick? It's real easy when you find yourself being sick more often than not.

These are just thoughts. I'm just spilling em.

Other things on my mind:

I'm not a huge fan of public transportation, but I'm glad it's there when I need it. Lately the weather has been too shitty to commute in by bike, so I'm stuck riding the bus to/from work. Little things(but big things to me) drive me bonkers about public transportation--nothing makes me see red faster than a crowded standing room only bus with one or two idiots taking up two seats by placing their belongings in the empty one next to them.

The bus is also a trigger for migraines...more frequently than I care to admit. There are individuals that wear heavy, heavy perfume. People that slather it on as you're sitting next to them. Or someone sits down in front of me that just hotboxed a cigarette at the bus stop. These smells can send me straight to hell if I'm already hurting. What do I do? I change seats. One time the entire bus smelled like exhaust, I had a migraine, and the combination of that drove me off the bus half a mile from my usual stop so I could throw up.

I know what smells trigger my pain--know it as soon as it hits my nostrils. I wrap my scarf around my mouth or I bury my face in my hat. There is nothing you can do about these public triggers--when people get ready in the morning it's not up to them to know if their perfume will make my head hurt. I am well aware of that which isn't in my control. One can never tell what the person next to you or behind you is going through. I know this and yet I cannot express how angry I get when I realize that someone's scent of choice is going to put my head in the toilet. I catch myself getting angry in the moment even though there is nowhere to direct that emotion. It's better to stay calm, keep breathing, and covering the nose.

This particular post has no point really. I've had a migraine hanging around for over 24 hours now and I'm just hoping that it will move on like a storm cloud.

isolation

"Migraine headaches are excruciatingly painful, exhausting, and scary, but almost worse than the head pain and nausea of migraine disorder is the inevitable sense of isolation- the feeling that you are alone, adrift on a raft amidst a sea of tumultuous waves of pain. Social isolation is common in chronic pain illness, but by learning some valuable coping skills, you can beat the odds."

"Sunday night I had an epic crying session. I wanted out of this body, this cage. I was tired of having to fight to do the smallest tasks, like eating or showering. I didn’t want be sick anymore. I howled and shook with frustration and fear for hours."

"People with migraines often feel isolated. The unpredictable attacks can make it difficult to plan or participate in social functions, family events or fulfill work responsibilities. A 2010 study of 246 adults who suffer from persistent migraines found that family members and friends often don’t understand and are sometimes even skeptical of the extreme discomfort sufferers experience. The study found that those with chronic migraines feel stigmatized more than people with other brain disorders. Migraine sufferers feel more rejected, ridiculed and ostracized by the people around them and the condition worsens the more severe the migraines."

These are excerpts plucked from various sources on the internet regarding migraines and feelings of isolation. This is something I struggle with a lot, especially more as an adult. As a teenager they weren't as frequent, and I would fight through them because I had no interest in being confined to a bed when there were things to do and sports to be played and tests to take. Now with their frequency and severity, it's pretty much impossible for me to just ignore it and go about my day.

I have a hard time with this. It ain't pretty. In the depths of a migraine attack I will phone friends just to hear a voice, just to feel connected. It's basically me crying while they stumble through what to say to me. I've perfected my migraine cry. See, crying hard makes the head hurt worse, so now I cry with hardly any tension. No squinting, no sobbing if I can help it. I let the tears just come, I let my face fall to my feet. In those moments you can't NOT cry. But it hurts so you kind of have to event a less painful way to mourn the situation.

It's hard to have people around on a logical level during a migraine attack. There isn't much I can do--can't jump around or talk a lot, can't really provide entertainment aside from continual vomiting and writhing. But I cannot stress how vital human presence is to me in such a vulnerable state. I'm well aware that it probably doesn't make much sense but with pain and need I don't find sense-making to be a top priority. How many friends have come to sit with me or spend the night during these moments? Not many. I can name two. I don't blame them. It isn't fun. Who wants to see someone else in pain? I'll say it again: it ain't pretty. But human presence...at a time when I feel so out of my body and mind, when I feel disconnected to everything but pain...that human presence reminds me that there is gravity, an Earth, a tether. When the pain gets really bad I feel quite desperate, and that desperation scares me so much. This is also why another person's presence is so important to me. Even if they go in the other room while I lay in bed suffering through it that's fine. It is the shared air that calms me. With someone there I will not be driven to harm myself. I don't know how else to say it.

This feeling of isolation swells and shrinks. It is not permanent, but when it comes it feels quite set in stone. When I am not sick, it hovers somewhere just behind me, waiting. Tiny but there. I know people that suffer from chronic pain, but not many--even less will openly talk about it. This leads me to wonder if I should look into starting a support group, or finding one to join. It is hard to have a foot in both words and to straddle it all--a foot in the actual world and a foot in the world of pain. It would be nice to have others to talk about it with.

Isolation sucks. It hurts. At my core, I am not a lonely person. I kind of feel forced to be. It breaks my heart.