Tag Archives: chronic migraine

Learning How to Live with Chronic Migraines

As of July 3, 2017, I have been reluctantly learning how to live with chronic migraines for four years. This anniversary passed with a pit in my stomach, extra weight on my shoulders and limbs, and nothing more.

how to live with chronic migraines
After the drought.

Time is not as heavy when you’re sick. How could I possibly count the lives I’ve lived in the past four years? How can I explain the agonies, the nightmares, the feverish desire of the past four years? How can I possibly explain the calm with which I now greet each day – even as a storm rages in my brain and central nervous system?

How to Live with Chronic Migraines: Lessons in Life and Suffering

Robert Frost wrote, “In three words I can sum up everything I’ve learned about life: It goes on.” This was one of my favorite quotes as an angsty teenager and still is today as a 28-year-old woman with a chronic illness.

I am not as elegant as Robert Frost, and I’m prone to (light) plagiarism. But I, too, can sum up everything I’ve learned about life, particularly about life with chronic migraines:

Life is suffering.

On the surface, this lesson that I stole from Buddha feels inherently negative and necessarily harsh. But unravel its threads and you can see the truth, the beauty, and the freedom that this idea holds.

how to live with chronic migraines
After the drought.

For women, this idea is familiar or even obvious. We who bleed monthly with a whole body shudder know suffering. We who hold the seed of life every day, feel the weight of its responsibility, know this.

We who are sick know this. But as independent, modern women and men, we fight suffering. From the first breath we seek comfort, relief, fulfillment, and the more we suffer the harder we seek.

To be still , to accept the suffering of life , is to be free. To end the seeking , to acknowledge your suffering, is to be free. To feel the suffering of others flow through you, made of the same cloth as your own, is to be human.

The idea that life is suffering – and that it still goes on – hit me suddenly four years ago with the shock of jumping into a near-frozen lake. It took me four years of fighting, four years of weakness, four years of seeking and desiring, to learn how much power I hold in my suffering.

how to live with chronic migraines
After the drought

Life is suffering. Suffering is life. In the final waves of your mother’s womb before you took your first breath. In the scream of a blackbird as a raven devours her young. In the bumper to bumper traffic you sat in this morning. In the words you say to those you love that you can’t forget.

From pain, comes beauty. From pain, comes life.

I’ve Learned Enough for a Degree

It took me four engaging and exhausting years at UC Santa Barbara to earn a double major: Bachelor of Arts in Environmental Studies and Political Science. The past four years learning how to live with chronic migraines have been equally draining and enlightening.

For the occasion of surviving – no, thriving – through four years of chronic pain, I have invented and am presenting myself with a degree:

Bachelor’s of Life in Suffering and Chronic Pain (with a minor in empathy)

how to live with chronic migraines
After the drought

Although I’ve learned many lessons in how to live with chronic migraines, I have not necessarily accepted that chronic migraines will always be a part of my life.  But if life drags me through Suffering and Chronic Pain grad school, at least I know I’ll be able to handle it.

Tools to Help you Live Better With Chronic Migraine

Each of these resources has helped me personally. If you’re struggling to make sense of a life with unpredictable pain, I highly encourage you to poke around and try out some of these tools:

Heal Chronic Painone of many free meditations from DoYogaWithMe.com

Dr. Dawn C Buse – learn diaphragmatic breathing and relaxation from a Migraine psychologist

Migraine Strong positive support group on facebook for Migraine diets and Migraine living

Migraine World Summit knowledge is power. Arm yourself with tools and science from the top minds in Migraine medicine

Find a Cognitive Behavioral Therapist –  I think every person with chronic pain can benefit from CBT. (I personally relied on CBT during the darkest of times, and I’m very grateful for it). If you have issues with sleep, anxiety, or depression on top of chronic migraines, I encourage you even more strongly to see how much a good therapist can help.


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Binge and Mud: Poems of Invisible Illness

Ever since I was a child, I have divulged my deepest, darkest selves through poetry. Most of the time, it was terrible poetry, but the effect was the same. Writing poetry is therapy, a form of catharsis, a way to break down the world around me and inside me into digestible, if not unsavory, pieces.

With these original poems of invisible illness, I aim to pull back the sheets and explore the agony, ecstasy, and tedium of living with Chronic Migraine. They’re raw and real and I make no promises that they aren’t terrible:


Binge

On distraction
On medicine
On love
Drinking deeply half a dozen
Of everything that tastes good,
Everything that brings a twinge of pleasure
(how much more is needed to drown pain?)

My physical body is equally lustful
Every sensation
Every ray of light
Every ripple of sound
Taken into pain

Can you blame me
for my feasts?
Do you understand
My invisible burden,
My Grinding yet innocent wants,
(what could be more innocent
Than the simple desire for relief?)
comfort,
neutrality
life without the constant glow of pain?

I feel betrayed,
But by whom?

poems of invisible illness
Photo: Ryan Alonzo.

Mud

I.
I collect steps, the cries of gulls,
The wing beats of swans
The taste of salt.
I slide through mud,
Past cowpies and sagebrush
Newly uncovered by the spring melt

I am here
I say to the Earth and no one
I am strong. I have worth. Like you.
I am here

II.
my soft places ache
It’s neurobiological
Biological – yes – but neuro too
The sting of the neurotic still potent
Soft nerves
Fragile female
Pass the smelling salts

III.
There is mud on my shoes again
a trophy to me
a symbol of another day lived

Most days my shoes are dry

The weight of disease makes my shoulders ache
Like a remnant twin,
a gall engorged in bark,
a wooden t grown heavier

Migraine plucks my nerves raw and
sinks thumbs into eyeballs
It rams sharp elbows in my gut and
Grates my skin
those soft places they tell you to aim for
In the event of an attack –

A stranger attack,
An attack by a man.
there is no fighting back during a Migraine attack
No skin to claw at or balls to crush

Nothing to do really
But draw the shades,
Close your eyes
and take it

IV.
My feet pound the soft water logged Earth
And she pushes me up gently
Here, here, here
My feet, my heart,
My temples thud
Here, here, here
Is the reply
Another day lived
Another day still intact,
If not badly frayed
And caked in mud.

End

Want to share your poems of invisible illness, Migraine, mental illness, or chronic pain?

Email me: angie@chronicmigrainelife.com (or use the contact form on this blog)

Unless otherwise stated, images belong to author

How to Embrace the Good Days with Chronic Migraine

Good days with Chronic Migraine, though not pain-free, are vital for nurturing strength

There is no greater high than a sick body feeling well.

My partner joins me on a run, despite being way faster than me.

I am incredibly happy to say that I know this intimately. After several weeks of bad days and slightly less bad days, I am feeling well, vital, energetic – almost the way a person without chronic illness might feel. The unignorable head pain has shrunk to an irritating hum. The persistent nausea has died down, enough at least to let hunger flood back.

I have seized each day that I have woken up feeling well. Despite hearing many cautions to “not overdo it,” which is actually good advice, I throw caution to the wind. Every day that I’m physically able to, I tie on my running shoes and pick a different mountain trail to call mine.

When my feet are pounding the dust or swerving around rocks or picking my way through dense sagebrush, I am no longer a sick person. When the sun is on my face, I don’t think about Migraine. I don’t think about prevention, triggers, whether or not I’m doing enough (for the record, I am.) I don’t worry about affording my meds or side effects or proposed budget cuts to federal disease research – my only hope for a cure.

Good Days with Chronic Migraine Nurture a Sense of Vitality

When I am running, I simply am. Breath, sweat, dust. I am a part of this world as much as the root of the Jeffrey l leap over or the hermit thrush I share the shade with. When you spend days, weeks, or months inside, sick with Migraine, the outside world seems like a dream. Like a dream, life outside your four walls is maddening in its closeness and unattainability.

good days with chronic migraine
Parker Lake, the destination of one of my trail runs.

It’s hard not to feel trapped. It’s hard not to feel like a prisoner in your own body with an invisible and cruel jailer.

The good days, though, these precious glimpses of health, this is what I life for. This is what every person with a chronic illness lives for – the good days past and the hope for more to come. This is why we restrict our diets, suck down supplements and pills, and spend thousands of dollars a year just on the possibility of progress.

Making it through the bad days with spirit intact is never easy. For me, it has gotten easier – just a little. The miracle that makes it all okay is feeling all the pain, emotional trauma, and unreleased energy of the bad days melt away. As quickly as the sickness ascends it is forgotten – at least mostly. Chronic pain keeps its tendrils wrapped around me every day. The good days with Chronic Migraine are never free of pain – there are no days without Migraine when you’re chronic.

These Are the Days I Live For

Little Goop listens to chickadees singing through the open window. He makes both good days and bad days better.

But those hours, as fleeting as they are, when I can forget Migraine and feel the strength and vitality of my body – these are the days I live for.

Today is the fourth consecutive day that I have not had a migraine attack by noon. I haven’t had a wellness streak this long in months – I can’t even tell you how many. I have been working my ass off to get here and I’m going to keep working my ass off to stay here. I know that no matter what I do, though, the next attack will hit. I will hunker down, I will grieve, I will endure. I will wait as patiently as I can for my next hours of freedom.

These fleeting good days with Chronic Migraine are an important reminder of my strength – a strength that can be hard to find on bad days. I know it’s in there, though, and I will do my best not to forget.

I will do my best to cultivate my strength like a rare and finicky orchid – so much work , but the end result is so beautiful that it hardly seems real.

Main image: Ryan Alonzo Photography

All other images: Angie Glaser

Running on Empty with Chronic Pain in the Passenger Seat

My car tire sprung a slow leak. I filled it with air at the local gas station, ignored the tire pressure warning light, and continued on my daily juggling act.

Self-care helps tremendously.

Between a part-time job, Maid-of-Honor planning duties, daily headaches, near-daily migraines, the chores of taking care of a snow-covered home and a blind kitty, and small contributions to patient advocacy, my life has become a juggling act. I begin each day with less energy than required to get everything done, and yet I manage. I postpone, cancel, and schedule in sick time, but I manage.

Chronic Migraine has introduced a slow leak into my life.  I have no time for a slow leak in my tire.

Like most of life’s problems, ignoring my leaking tire only made it worse. By the time I realized my tire wasn’t holding air, I had driven hundreds of miles and effectively wrecked my tire.

I finally crawled out of bed and my Migraine haze and took my car to the shop, but by this time my gas tank was emptier than my tire. My car had been slowly breaking down, lighting up warnings on the dash and dinging at me to get my attention. The longer I ignored it the worse it got.

If that isn’t a perfect metaphor for chronic illness, I don’t know what is.

Literally and figuratively, I’ve been running on empty with chronic pain.

It’s Okay to Ask For Help

Every time I have been struggling in my life, I have been able to turn to my parents. I am incredibly lucky. Whether the problem is my increasing disability or a leaky tire, my parents often recognize the issue and interfere before I even ask for help. (Really, what more could you ask from parents? I am so grateful and so filled with love for them.)

running on empty with chronic pain
My parents and partner aren’t the only ones who help me out – kitty cuddles are priceless.

Eventually, my dad filled up my tire and made me an appointment at the tire shop. My mom took car of business at the shop so I wouldn’t have to withstand the smell of the rubber tires. (For those less acquainted with chronic illness or Chronic Migraine, strong smells can be difficult to handle at best or trigger migraines at worst.) She even filled up my gas tank for me and picked my car up at the end of the day.

Over dinner she told me, “Did you know you were running on empty? I filled up your tank for you.”

Oh, Mom, if only could you help with the other empty tanks in my life!

Lessons Learned by Running on Empty with Chronic Pain

The way I see it, this story has at least three different morals.

Moral #1: I am not the most responsible adult. This point is pretty obvious, and you very well may be shaking your Baby-boomer head at me. I’m not proud of my terrible ability to take care of my car, but I’m trying. And I’ve learned to stop ignoring the lights on my dashboard.

Moral #2: It’s okay to drop the ball. When you’re juggling a full life on top of chronic illness, sometimes you have to chose which ball you let hit the floor. In this case, I dropped the ball on my car. Next week, it will likely be something, but I will try my hardest to keep juggling.

Moral #3: Our support systems are so valuable when we need help. Asking for help is so hard, and not everyone has parents who understand their illnesses. Everyone with a chronic illness needs help from time to time, whether it’s in-person help with daily logistics or emotional support from friends online. Never be afraid or ashamed to admit you dropped the ball and need help. We are stronger together.

Tell me – Are you running on empty with chronic pain? Do you ask for help when you need it?

Image credit: Unsplash