Tag Archives: Chronic pain

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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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

Weathering the Storm in a Mammoth Winter of Migraines and Snow

winter of migraines
Skiing among whispy clouds. Image: Angie Glaser

Chronic Migraine makes me feel like Dr. Jekyll and Mr. Hyde. I am two people living in the same tired body. The pull into the pain and madness of Hyde has been strong this winter, as my body and mind weathered migraine attack after migraine attack – some lasting as long as 6 days.

This winter has been a winter of snow, a winter of change, a winter of adventure. Like the 15 seasons that came before it, this winter has been a winter of migraines.

Resisting the Urge to Hibernate

winter of migraines
Goop doesn’t let his limitations keep him from adventure, either. Image:: Angie Glaser

I am lucky. I live in a little cabin sandwiched between snowy domes and formidable peaks. The Sierra Nevada is my happy place – the place where I feel most connected to my healthy, vibrant self and the rich world I get to live in.

If anything is strong enough to dull the glow of my happy place, though, it’s Chronic Migraine.

I found joy in crafts, baking, my home, and my friends this winter. Even as I battled migraine attacks and snowstorms, I found joy in my body and in my environment.

While I devoted my time and energy to work, hobbies, and health, my Migraine self – my Hyde – constantly lurked in the shadows. Like most people with chronic pain, I spend huge swaths of energy steering myself away my Migraine self, my Hyde. If I don’t invest in me, if I don’t choose joy, I run the risk of becoming Hyde full-time.

Forcing myself to go for a run with a headache, popping on an ice pack and writing away on my laptop, bundling up and grabbing my skis when my body wants to be in bed for the fifth consecutive day – from the outside my battle looks like the normal life of a young person. In reality, each hour during this winter of migraines that I managed to resist hibernation is a huge victory.

winter of migraines
My partner Eric Smith and I digging ourselves out of a mammoth winter. Image: Angie Glaser

Shoveling, Skiing, and Sleeping My Way Through a Winter of Migraines

winter of migraines
Atmospheric rivers turned our street into a ski track. Image: Jackie Glaser

These victories are even more impressive when you consider the kind of winter we’ve had. If there was ever a winter made for hibernation, it is this one.

The ski mountain that looms dramatically over my home currently reports 330″ inches of snow at the summit. That’s twenty seven and a half feet!!

In an attempt to save some cash, my housemates and I decided not to pay for snow removal for our four-car driveway. This means we shoveled (by hand!) our way out of each atmospheric river snow dump. The snow was so thick that on several occasions we left our cars at home and skied the unplowed streets.

Chronic Pain Be Damned

Living well when you’re sick every day is damn hard. I know from experience, though, that

winter of migraines
Snow + headband = emergency ice pack. Image: Eric Smith

it is well worth the effort. I have bad days and worse days and I’m tired all the time. But I am creating a life I love with people I love in a place I love – chronic pain be damned.

Really, what more could I ask for?

Today is the Vernal Equinox – the first day of Spring. I am ready for a new season, a sunnier season. This spring, I chose adventure. I strive toward health and pain-free days.

Above all, I remain committed to taking this journey one step and one day at a time.

reading with chronic migraine

Life Without Books: Mourning My Migraine Sacrifice

Not all of the friends lost because of chronic illness are made of flesh

The backs of shampoo bottles. Street signs and shop names. Catalogs and junk mail. Words swirl in my mind all day long. My eyes are drawn to words – in the car, in the shower, on the toilet, in the kitchen. A stack of papers on the counter is a temptation too much to resist for me. I have been accused of being nosey more than once, rifling through a friend’s mail.

The author and her dad and a book. 1993ish

In other words, I love words. A reader since age four, words have been a big part of my life for as long as I can remember. I hold my own memories and the stories I have read just as dearly. Anne of Green Gables was my bosom friend, dear to me as her living, breathing counterpart. Mary, Beth, Jo, and Amy March – the sisters from Little Women – taught me almost as much about feminity and independence as my own three sisters.

When I first encountered death at a young age – in its slow, stinking form of cancer – and its partner grief, I took to the page. I wrote a story – full of plaigarism, spelling mistakes, and hearts over the i’s like you would expect from a 9-year-old girl. It was morbid and a little silly, but it was the only way for me to make sense of something as big and unpredictable as death – through words.

Reading with Chronic Migraine? Yeah, Right

The author and her mom and a book. 1993ish

Eighteen years later, Chronic Migraine has changed everything. Chronic Migraine brings a lot of baggage – debilitating and diverse symptoms, ruined relationships and careers, destroyed dreams and altered plans. Among other things, Chronic Migraine brings me light senstivity, a headache all the freaking time, and a very different relationship with words.

I still love words. I devour podcasts and music and audiobooks regularly. Writing is a huge part of my life. But books – the magical, rough, fragrant physical objects with their coffee stains and barcodes – are no longer an integral part of my human experience. Chronic Migriane has stolen so much from me that it may seem silly to mourn the loss of books, but for me, it is devastating.

I can still read, of course, and sometimes I still do. But in the same way that I have to carefully moniter and allot the little energy I get each day, I have to regulate how and how long I use my eyes. Because the majority of my pain is in my head, my face, my eyeballs, and my neck, any tasks that involve visual and/or intellectual concentration is difficult and draining.

I am so, so, so lucky to have a paying job where I not only get to learn and advocate about my illness, but I get to use the very thing I love so dearly – words. Like so many other jobs, mine involves a computer screen. Every hour I spend looking at a computer screen or shopping in flourescent lights or walking in bright sunlight is an hour that I cannot spend looking at a book. I simply do not have the well hours and my aching eyes do not have the ability to do it all. Reading with Chronic Migraine is near-impossible.

From Dostoevsky to To-Do Lists

Chronic Migraine is a lot like this Twilight Zone episode. Haven’t seen it? Netlifx.

Giving up the pages of books is a small price to pay for what I have gained. Gainful employment and being active outside are two big parts of my life right now. To a healthy person, this sounds basic, but anyone with a chronic illness understands that both of these are HUGE. This time last year both were merely fantasies.

I still have mulitple library cards. I still go to the library regularly, with my laptop to write or sometimes to just walk up and down the rows of books, breathing deeply their smell, carresssing dusty spines, and remembering old friends. I still scribble in a Moleskin from time to time and skim too many political articles online.

Sometimes I pick up a book of poetry or short stories, but unlike in my healthy life, I rarely finish an entire volume. Reading with Chronic Migraine is a stunted, unsatisfying affair.  I read The Brothers Karamazov at 17 and at 27 I stick to mainly to the backs of shampoo bottles, street signs, and junk mail.

I miss books deeply – I miss seeing them on my nightstand and feeling them knock against my thigh in my purse. But mostly, I miss myself when I was reading books. I miss the days when, “Does my brain work?” and “Will I be able to open my eyes today?” were not the first questions that ran through my mind in the morning.

But I am coping – with this loss and the many, many others that I have sustained at the hands of chronic illness. I have faith that someday books will be a big part of my life again. Until then, I’m going to keep holding on tight to my library card – and my Audible subscription.

strength of the chronically ill

I See You: A Letter to the Chronically Ill

To the woman with a migraine serving me coffee:

I see you. I see how you are trying not to squint beneath the fluorescent light. I see how hollow your smile is. Despite your best efforts, I see the pain that you are trying so hard to hide.

Three years ago, I would not have noticed the physical pain beneath the face of a passerby.

I would have dismissed her drooping eyelids, hint of irritation, and shoulder rubs as signs of a late night or early morning. Now, I have experienced enough pain that I see it in others, and I recognize intimately the steps they take to carry on despite it.

The woman at the coffee shop and I are not alone in our pain. We aren’t even a rarity. According to the Center for Disease Control, 113 million Americans have at least one chronic illness.  And a whopping 76 million Americans live with pain, according to the National Center for Health Statistics. This pain affects more than just our bodies. It affects our mental health, our social lives, our jobs, our families, our identities, our relationships. Chronic illnesses and pain are so prevalent and far-reaching that they affect who we are as a society.

The Quiet Strength of the Chronically Ill

Along with 76 million other people in this country, I wake up most mornings in pain and go to sleep most nights in pain. When I make plans, I do so cautiously, never forgetting that I may have to back out at the last minute. Some days I pay so much attention to the symptoms and moods of my own body that I forget to look around me at the people and places I love.

The truth is, chronic pain makes you feel weak, weary, and, at times, completely broken. To some in the outside world we may even look weak and broken. Our days are too often spent on medications, appointments, special diets, and self-care instead of on building our careers or social lives.

Our aspirations and accomplishments look different from those of our healthy peers. It takes an intimate look at the life of a person living with chronic pain or chronic illness to see that everything that appears to make her weak is really making her strong.

chronically ill
Like an alpine lake, the chronically ill remain calm and graceful after even the worst of storms. Image: Angie Glaser

Those of us with chronic illness experience the same joys and stresses as healthy people. We do so, though, with the added pain, symptoms, and stresses that come with a body that doesn’t quite work the way it is supposed to. The stress of every head cold, every birthday, every argument with our partners is filtered through a lens of pain.

I truly believe that this added pain and stress – an obstacle that often seems insurmountable – makes the chronically ill strong. I truly believe that the chronically ill are stronger than most of our healthy peers. We have to be. We have no choice. Pain is an unignorable companion that steals our days and our energy. Yet, we survive. Better yet – we thrive.

Those of us with chronic illnesses prepare meals, close business deals, teach school, ride public transportation, raise children, take care of our families and pets, remember birthdays and anniversaries – all while fighting an invisible battle. We swallow our pills and our pain and our pride, and we live the best way we can – illness be damned!

For the most part, our efforts go unnoticed. Sometimes they are unappreciated even by ourselves. Anxiety and depression are common among the chronically ill. Sadly, for some, the unending pain and lack of help or hope becomes too much. Suicide among those with chronic illness or pain is way too common and not acknowledged often enough.

It is so important for those of us in pain to remember that:

Yes, Pain Does End!

There is always hope for a new treatment, a new perspective, a new purpose.

hope for the chronically ill
After every winter comes spring. Image: Michael Levine-Clark

Being ill or in pain does not, in ANY WAY, diminish your worth or value as a person. It doesn’t matter how many hours you spend watching Netflix or whether or not your pain is recognized by your boss or your doctor. You matter, and you are a lot stronger and more remarkable than you realize.

 

To the man or woman with chronic pain reading this post:

I see you. I see the strength beneath your tears. I see your purpose rising above your pain. I see your efforts, your losses, your grace. I see what is invisible, and I see how you grow despite its  efforts to tear you down. I see you. I am with you.

I am proud of you.


Resources

To Learn More About Chronic Illness:

– The Growing Crisis of Chronic Pain in the US

Facts and Figures on Pain

For Women in Pain:

For Grace

To Support Migraine Research:

American Headache Foundation

Migraine Research Foundation

Coping with Chronic Pain:

 American Chronic Pain Association

 For Grace Master List of Resources

Grief and Chronic Pain


Feature Image: Jerald Jackson

 

One Less Wild Woman

One Less Wild Place

one less wild woman
The wetlands bloom for most of the year.

Wild places to walk, sweat, explore, and breathe in are precious. Growing up in the suburbs, wild places that were near to me were made even more precious by their rarity.

I was surrounded by concrete and the inescapable roar of engines, but I could retreat to a wild place. I was lucky enough to grow up near the ocean and the wetlands. I run on dirt trails and watch as migratory birds pass through our coastal home. Migraines make me spend too much time in a dark room, but I am able to practice my own ecotherapy in these wetlands where I find nourishment in fresh air and clouds.

My favorite running route wound through a large field that was half strawberry field, half undeveloped chapparal. Songbirds, raptors, bunnies, and squirrels called the large area home. I ran through the field and along the channel hundreds of times, passing the same dog walkers and familiar bird species each time.

one less wild woman
The strawberry field is now a construction site and soon to be a neighborhood.

The strawberry field is now gone. The raptors perch in snags at the edges of what used to be a thriving field. The drone of engines is inescapable as tractors comb the wet earth, flattening and scraping for the neighborhood to come. It is impossible not to mourn the loss of this wild space and the wild things that called it home.

A neighborhood behind me stands mostly empty on the bluffs. The bluffs provided nesting sites for large herons and egrets. The houses are huge and mostly alike, but for some reason, no on really lives there. Who decided to replace these wild homes with more empty concrete ones?

One Less Wild Woman

This is, of course, not the first or most dramatic time I have mourned the loss of wild things. I spent summers in my early  20’s living, working, and playing in the Sierra Nevada mountains. I fell in love with rivers and mountains, lakes and peaks. I lived in a tent cabin and spent as many nights beneath the stars as I could.

wild place wild things
Canoeing on Mono Lake with my boyfriend Eric Smith. Photo by Scott Smith

I worked on a river and a lake. I guided hikes and campfire programs. I met people from all over the world and swam, hiked, and loved the mountains all summer. Fall, winter, and spring were spent dreaming about getting back to the Sierra. I continued to run and climb indoors, preparing my body for miles of adventures to come.

A few days after my 24th birthday I awoke with a migraine. It was a persistent one, and it seemed to launch me into a new life of chronic migraines. After several weeks in bed, I said goodbye to my job and mountain home. My migraines and I spent the next three years healing in the suburbs. It was the most trying period of my life.

One Less Wild Cat

one less wild woman
Boxes make the best beds.

Sometimes caring for another helps you care for yourself. A rescue kitten came into my life shortly before my 27th birthday – just last June. He was sick, blind, and needed a home. I had no intention of adopting a pet until I met little Jupiter (aka Goop). Knowing how it feels to be lonely, sick, and stuck in the dark, I couldn’t let the little guy go back to a hard, wild life despite his special needs.
The last thing my life needed was responsibility and more medical bills, but that is what I got. Like most reluctant pet parents, I wouldn’t have it any other way. Migraine days and good days alike are made better with a companion and kitten cuddles.

A New Wild Home

The domestication of both Jupiter and myself is finally coming to  an end! Last week I signed the lease on a new home in the mountains, not far from where I lived before chronic migraines. The relief and gratitude I feel every morning that I wake up to smell Jeffrey pine trees and listen to nuthatches call to each other is indescribable.

one less wild woman
The shady porch of my new mountain home is a cozy place to sit during a migraine.

The transition period is still in full force. My clothes are in boxes, and I left my kitten at my parents’ home for another week. The aspen trees are turning brilliant orange and the air is noticeably crisper. Soon the snow will come and we will settle in to a season of warmth, health, and growth.

Moving back to the mountains and creating another wild home was a dream too big to consider for years. Now, thanks to a part-time job with an understanding boss, fantastic roommates, and my always patient boyfriend, I once again feel at home. I once again feel wild.

Feature Image by Eric Smith

A Fresh Start

Just before sunset I put on my neglected running shoes and went for a walk. As the sun set over the wetlands, my mom and I watched the dabbling ducks dive for the last meal of the day. We watched the ibises and the egrets fly home in groups of threes and fours. We watched the colors change in the sky and on the water, and we just walked.

After more than two months in bed with pain so big  standing up made it worse, walking in the cold fresh air felt like a baptism. It is hard to feel full of life when you are stuck in bed, day in and day out. It is hard to feel full of life when every movement, sound, and light hurts. It is hard to feel full of life when your whole world feels as big as as your bed on a good day and as big as your body on a bad day. Just being outside, feeling my muscles and joints reawaken, I felt like I had been given a completely different body.

Recording the end of my migraine, maxed out at 999.99 hours

Even better, I felt like I had been given hope. The chronic illness journey involves constantly toeing the line between hope and fear. Naturally, any time my health gets worse or I experience a prolonged migraine attack my thoughts turn more easily to fear. Fear of getting worse or never getting better, fear of side effects and complications, fear of judgement and abandonment. These are the days when hope is at its most powerful but is the most difficult to draw upon.

As I move further along on my chronic pain journey I am getting better at  finding joy and hope during periods of illness. I expect this to be a continuous challenge filled with ups and downs befitting the cyclical nature of grief and gratitude. When the pain subsides, though, the joy is overwhelming.  All of a sudden the hope and gratitude that I have struggled to hold onto come easily. Watching the sun set and the birds dance I am reminded that my place in the world is so much more important than my illness. I am reminded that I am so much more important than my illness.

Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting
over and over announcing your place
in the family of things.                                                                                                                                     – Mary Oliver

Chronic Illness and Living Vicariously Through Books

I have had a migraine for the past THIRTY SIX days. Surprisingly, I have not yet gone insane. I have been more or less glued to my ultra cozy bed in my dark room. Trying to make myself as comfortable as possible has become my full time job. My muscles ache, my head is pounding, the room is spinning, my ears are ringing, and my stomach is churning. I feel like I have been violently struck in the head every day for the past 36 days.

Seriously, even my hair hurts. Thanks to the magic of the central nervous systems, migraines manifest themselves in a variety of bizarre symptoms like allodynia. Allodynia is the experience of pain from touch that should not be painful. When I have a migraine, the pain nerve cells in my brain and spine get over-excited. The sensory signals in my central nervous system get mixed up and cause normal touch to produce an abnormal painful result. A neurologist recently tested me for alloydnia by lightly running a paintbrush over the skin on my forehead. Just that light touch caused intense pain in my head.

Migraine sufferers who experience allodynia are more likely to find that their migraines don’t respond to triptans, which are one of the most effective families of migraine drugs. Despite years of trial and error triptans have never worked well for me. Because I haven’t found a medication that aborts my migraines, I run the risk of developing migraines that lasts for weeks. These long-lasting migraines are called status migrainosus or intractable migraines. They are pure hell.

I have kept my sanity intact through these long weeks of pain using the most powerful tool at my disposal: distraction. I binge watch every episode of Parks and Rec through half open eyes. I crochet beanie after beanie. I listen to podcasts and gentle music. I take more naps than a toddler. Nothing takes me away from my pain, however, like the emotional power of a good novel. I recently finished listening via audiobook to the final novel  in Italian novelist Elena Ferrante’s Neapolitan series, The Story of the Lost Child, and I enjoyed it so much I am ignoring my angry head to tell you about it.

Me circa 2000. Wishing I wasn't a muggle.
The author circa 2000. Wishing I wasn’t a muggle.

The Neapolitan novels follow the lives of two women, Lenu and Lila, who were born and raised in the slums of Napes in the 1950s. Through the lens of their friendship, Ferrante paints an intricate portrait of life and death that is impossible to not get swept up in. While reading the novels, my life became entwined in the loves and losses of the two girls. I ached with them and loved with them. I grieved with them and grew old with them. Thanks to the Ferrante’s skill as a writer, I peeked into the dusty corners of their lives and I saw myself.

The Story of the Lost Child (Neapolitan Novels, #4)The Story of the Lost Child by Elena Ferrante
My rating: 5 of 5 stars

I am blown away by Elena Ferrante’s skill as a writer. The Neapolitan novels are some of the most honest and moving pieces of fiction I have read in years. These novels are about many things: friendship, loss, childhood, daughters, violence, politics, writing, reading, love, feminism, mothers, sex, education, Italy. Through the experiences of two Italian women, Elena Ferrante beautifully captures the complexity of human relationships and all of the suffering and joy they bring.

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Truly great novels offer distraction and connection at the same time. Truly great novels soothe broken hearts and aching heads. They offer nourishment, solace, and comfort. Truly great novels simply make life more bearable. My pain is powerful but so are words. They allow me to live many lives and they help me fall in love with my own.  And for that I am grateful.

“Books are mirrors: you only see in them what you already have inside you.”
― Carlos Ruiz Zafón, The Shadow of the Wind

 

The Healing Power of Self-Compassion

On Monday morning, I experienced the simple bliss of waking up without a headache. Over a year ago, my neurologist told me that waking up every morning with a headache is a sign that I am over-using medication (triptans and Ibuprofen in my case) causing rebound headaches. Though I rarely treat my headaches and migraines with any medication that can cause rebound, my head is still wracked with pain most mornings before I even open my eyes.

Monday morning was different, though. I woke up pain-free and ecstatic to spend the day with my boyfriend who is visiting me after a long summer apart. We enjoyed coffee and breakfast together, and the pleasure of spending a pain free morning with the person I love the most made me giddy with gratitude and relief.

These moments of respite from pain are bittersweet and always too short-lived. Shortly after breakfast, I was hit with extreme fatigue. Nausea, light sensitivity, and eventually throbbing pain soon followed until I was fully immersed in a migraine. I went from a happy young woman ready for a beautiful day to an exhausted, brain-dead dark-dweller. In my pain and disappointment, I cried and raged and internally bashed my body for being useless for little more than misery or pain. Even after two years of chronic migraines, every single migraine feels like a betrayal.

My body deserves my compassion, not my rage.

I know this but have to remind myself of it daily. I expect a level of compassion from my family, friends, partner, and doctors that I have trouble giving myself. When a migraine sets in my emotional strength is drained, and my mind wanders easily to negative, self-critical thinking patterns. There is nothing unhealthy about complaining externally or internally when you’re in pain, but when you’re in pain for so much of your life those thinking patterns can take over and lead to isolation and a further diminished quality of life.

Continue reading The Healing Power of Self-Compassion