Tag Archives: chronic illness

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

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

 

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.

View all my reviews

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