Tag Archives: chronic illness

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.

chronically ill
Invisible illnesses aren’t always invisible. Image:  Angie Glaser

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