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:
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 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?)
life without the constant glow of pain?
I feel betrayed,
But by whom?
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
my soft places ache
Biological – yes – but neuro too
The sting of the neurotic still potent
Pass the smelling salts
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
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.
Want to share your poems of invisible illness, Migraine, mental illness, or chronic pain?
Email me: email@example.com (or use the contact form on this blog)
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.
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.
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
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.
I know how difficult it is to make progress against migraines. You can change your diet, change your sleep, change your habits – you can change your whole life and still find yourself battling the Migraine beast.
Fighting migraines can also feel like the loneliest battle. The people around you cannot understand, try as they might, the physical and emotional struggle. That is why it is so important for each of us to be our own advocates and do everything we can to make our lives with Migraine as easy and joyful as possible.
If you’re ready to start having more good days, feeling less alone, and suffering through fewer migraines, you absolutely must take advantage of this rare and free opportunity: The Migraine World Summit.
I attended the first online summit last summer, and I gained so many valuable tools and resources from it. The Migraine World Summit is back this April 23 – 29, 2017, with 36 new interviews with top experts and doctors. The best minds in Migraine research and the Migraine community will come together to provide answers, info on new treatments, research and best practices for migraines and chronic headaches.
The best part – it’s available to anyone with an internet connection and it’s free.
Migraine World Summit Speakers I Can’t Wait to See
The line-up for this year’s Summit is incredibly impressive. Some of the biggest and most respected names in Migraine research and medicine are included. The topics are diverse and all relevant to life with Migraine or chronic headaches, and I can’t wait to hear about all of them.
With much debate, I narrowed down the top three speakers that I’m most excited for:
– Dr. Joanna Kempner “Shifting Cultural Perceptions About Migraine”
Dr. Kempner’s book Not Tonight: Migraine and the Politics of Gender and Health has been on my to-read list for months. Just today a shiny copy arrived in the mail, and I immediately dug in.
Dr. Kempner is a sociologist, a woman with Migraine, and an expert on women and Migraine. Not Tonight untangles the complicated web of gender, migraines, and pain that affects so many of us. I absolutely cannot wait to hear what Dr. Kempner has to say about the way Migraine is viewed in our culture and what we can do to make it better.
– Dr. Brian Grosberg “Neuromodulation: New Devices that Can Ease Pain”
Neuromodulation devices are among the newest, most exciting migraine prevention tools available. How neuromodulation works is really sci-fi: a device is applied to the skin and uses magnets or electric pulses to stimulate the nerves involved in a migraine attack.
I currently use one neuromodulation device – Cefaly. I constantly positive and exciting stores about hear about Cefaly and other devices like Spring TMS, GammaCore, and the Nerivio Migra armband through the migraine grapevine.
Dr. Grosberg is the director of the Hartford HealthCare Headache Center. I cannot wait to hear which neuromodulation devices he is most excited about.
– Dr. Amal Starling “SEEDS Natural Method for Migraine Control”
I admit, I have no clue what the SEEDS method is, but I can’t wait to find out. I am ALWAYS look for natural tools for migraine prevention or pain control. While I’m also excited to hear about new developments in Migraine treatment and research, I have tried and failedso many medications and treatments. A new one has to look pretty good before I jump on board.
Natural ways to manage migraines, however, usually don’t come with big bills or side effects. It’s much easier to commit, and the results can be pretty powerful, in my experience.
Dr. Starling is an Assistant Professor of Neurology at the Mayo Clinic. As a young headache doctor at a very prestigious clinic, I have heard Dr. Starling’s name mentioned and praised many times. I can’t wait to hear her method for natural migraine control.
The Migraine World Summit is Too Valuable to Miss Out On
Battling Migraine is so exhausting, and after a certain point Google switches from your friend to enemy. The Migraine Word Summit is a free, online, low-commitment way to learn from the best. With advice and wisdom from some of the top headache doctors and experts, you can begin to make real progress in cracking your migraine code.
Sorry for the double posts, but I’ve just signed up for Bloglovin and I would love to see you there. If you haven’t yet used it, Bloglovin is a great place to read all of your favorite blogs and find new ones in one window. It’s easy, free, and beautiful.
Check it out and follow my blog to stay up to date.
When I first began writing this article I titled it “4 Lessons Learned and 4 Things I Struggle With After 4 Years of Chronic Pain.” Only after I finished the first paragraph did I realize that it has only been three years since I have been in chronic pain. Time becomes a fluid, sticky substance when you are sick. Night and day blur into one long, sleepy and sleepless period of temples pounding and stomach churning. The light is abrasive to my eyes so it’s dark all of the time anyway. I sleep when I can, almost eliminating night and day.
At least, that is how it was – for longer than I would like to consider. Things are slowly, very slowly, becoming more normal. I’m becoming more diurnal, going to sleep early and rising
early. My brain benefits from the routine and the normalcy even if my social life does not .
Managing migraines is a bitch, as I am a learning. A bitch that requires commitment to lifestyle changes that are not for the faint of heart. Willpower has never been my strong point (I’ve been a nail biter as long as I’ve had teeth), but I’m exercising that muscle as much as I can these days. I feel strong and powerful and healthy, if not boring and monotonous. I have also recently adopted a sickly, high-maintenance kitten and continue to care for my elderly cat named Kitten, thereby cementing my transition to full on cat lady.
At least, it is all paying off. My quality of life is improving, my sensitivity to light and sound is decreasing, and my average daily pain level is slowly getting smaller. These gains do not come without lessons and struggles, however.
3 Lessons Learned from Chronic Pain
Deadlines are bullshit. For example, my three year pain-aversary was on July 3rd, and I intended on publishing this article then. Life got in the way of my plans, though, in the form of a birthday, an engagement party, a kitten adoption, an unexpected visit, and many vet trips. Oh yeah, and too many days given over to the migraine monster. I’ve learned to be easy on myself and to flexible with my schedule. My body is going to dictate my days anyway, it doesn’t help to needlessly fret over it.
You have got to speak up. Owning your story is a way to make peace with it. Even more so, when your story involves illness and pain finding your voice becomes a crucial part of getting the medical care and having the types of relationships you desire. Viewing your relationship with your doctor as an equal partnership will help you stay engaged and confident in your wellness plan.
I’m stronger than I thought, and strength looks different than I thought it would. To some extent, this lesson may be a normal part of growing up. In a life punctuated by pain and migraines, it is a lesson that is glaringly obvious. At my sickest, most vulnerable, and most physically weak is where I found my greatest strength. It became a matter of survival, and I came out the other side a stronger, softer, and (I would like to think) kinder person.
(I’m an overachiever). Time can be your best friend or your worst enemy. Learning and practicing mindfulness has been a huge help to me. Learning to be okay in the moment, even if it is an uncomfortable moment, is crucial. Time, of course, also heals all, and problems seem to shrink rather than grow when seen through the lens of a few days.
This piece was originally published by Skirt Collective at www.skirtcollective.com.
I recently received a kind e-mail thanking me for this article and requesting more on the subject. While I’m not an expert, I am happy to republish my insights with the hope to help other couples make love work despite distance.
Long distance relationships suck. There, I said it.
It sucks to check your phone every five minutes. It sucks to spend Saturday with a book while your boyfriend is at a party 3000 miles away. It sucks trying to find someone to see “Gone Girl” with because all of your friends already saw it with their significant others. It sucks to stare at a pixilated face on a screen instead of a flesh and blood, kissable person.
When your partner is hundreds or thousands of miles away every aspect of your relationship is trickier – communication, trust, fights, sex. My boyfriend and I have been battling the distance for the better part of three years. Like many twenty-something’s we are nomads, moving where our jobs, family obligations, or travel adventures carry us.
Unfortunately, despite our efforts, our lives often carry us to different corners of the U.S. During the past three years we have become accidental experts on long distance relationships and the trials they bring. We’ve fought, we’ve lived together, we’ve moved away from each other, we’ve planned, and we’ve been disappointed. We’ve said goodbye and reunited more times and in more places than I can count – in airports, strip malls, the side of the highway, front porches, and urban street corners.
Long distance relationships may bring a fair amount of suckiness, but they also bring wisdom. The lessons I’ve learned about love, live, and myself during these three years (and counting) of distance have been hard won but valuable – not just for my long distance relationship, but for any relationship.
A flash of nostalgia came over me as I picked up the yellow towel on the couch and hung it up. I remembered my nephew flinging it aside last night the moment he got out of the bath, his long hair dripping on his small, cold shoulders. I saw the same image two nights ago when we planted in his garden after his bath. He seems impervious to the cold and intent on getting dirty, too excited to put on a shirt before grabbing his small yellow hoe. We had meant to plant during the afternoon of course, but my sister, his mom, is a self proclaimed hater of the wind and the palm trees in Southern California have been extra vocal this week.
My head throbs now when I hold the yellow towel just as it did when I watched his dear shoulders guide the yellow hoe through a path in his garden. I don’t notice too much. It isn’t too bright or loud, and every day I am learning to be calmer and gentler with myself.
I am trying to be patient with my body, giving it the time and space it needs to heal, and making an effort to enjoy every moment spent with my family.
My shoulders were even smaller than my six-year-old-nephew’s are now when I experienced my first migraine attack. I was three years old and just recovering from a nasty bout with the chicken pox when I experienced excruciating nausea and head pain. To this day I remember not wanting to watch Beauty and the Beast because the television hurt my eyes and how that fact scared me. At that period in my life, like so many budding bookworms in the early 90s, it was a serious emergency if I was too sick to watch Belle tell off Gaston.
I Now Pronounce You Diagnosed
Once I vomited (my greatest fear at that young time) the pain subsided a bit and I was able to sleep, but the attacks were not over. I experienced two more in the following weeks which meant a trip to Dr. Dias, my favorite pediatrician, a gentle Indian man with soft hands and incredibly blue eyes.
I have heard my mother tell the story of my toddler migraine attacks to several neurologists and doctors over the years, and she always includes this exchange:
Mom: Please don’t tell me she has migraines.
Dr. Dias: I can tell you these aren’t migraines, but they are migraines.
I now pronounce you diagnosed.
I don’t remember much about being three but most of it revolved around the back yard and my little sister and playing in the sprinklers. It’s easy as an adult to conjure up feelings of goodwill, love, and empathy alongside an image your toddler self. When you picture your young self ill or frightened the desire to comfort is strong and natural. But as we get older, thanks to society or nature or both, that desire fades and sacrificing our health for success, money, convenience, the happiness of others, fill-in-the-blank, is the norm. Whether you’re stuck inside with a chronic illness 23 hours a day or just doing what you need to do to make your day a little easier, each of us could benefit from looking in on that young self every once in a while.
Long must you suffer, not knowing what,
Until suddenly, from a piece of fruit hatefully bitten,
The taste of the suffering enters you.
And then you already almost love what you savor. No one
Will talk it out of you again.
-Rainer Maria Rilke
Even after a brief stay at elevation the air on the coast feels impossibly thick. The city streets seem too wide, the sky not blue enough, the horizon too far away. It doesn’t take long for the mountains to get under your skin. After only a few hours at elevation your blood thickens and your body produces more red blood cells. You become more efficient at using oxygen so that even this thin air feels more nourishing than her coastal cousin.
I was away less than two weeks this time, but it was long enough for me to reconnect to places and people that I love and miss and also meet and discover new ones. It was long enough for me to feel the freshly melted snow carry my hair downstream. It was long enough to sweat, climb, and bleed in the early summer sun. It was long enough to reawaken muscles and corners of my body and soul that have too long been ignored. It was long enough for me to remember what it feels like to be healthy again.
During the 12 days I spent in the Eastern Sierra I had four migraines. Each of those migraines lasted less than twenty four hours, not including the postdrome stage (also known as the migraine hangover.) To some this may seem like a lot, but compared to the baseline of daily, constant migraine that was my reality for way too many months, it is remarkable. Even just a day – an afternoon – of respite from pain is celebrated. You cannot truly appreciate the feeling of the sun on your skin until you have experienced true darkness.
Happy Migraine and Headache Awareness Month 2016!
This is my first year participating in this campaign and I am thrilled that the theme chosen for this year’s awareness month focuses on living well with migraines rather than solely awareness aimed at the general public. This year’s theme is Rule Your Headache Disorder with a special message to be actively engaged in your treatment and lifestyle choices. Like many migrainuers, I know from experience that ignoring my headache disorder, letting my doctor call the shots, or slacking off with lifestyle modifications can very quickly lead to a situation where I feel out of control. Alternatively, learning about migraines, keeping communication open with my doctor, and continuing my commitment to lifestyle modifications puts me in a position to best rule my headache disorder.
Combat Pain with Creativity
Active engagement in our treatment plan extends far beyond the doctor’s office, just as the tentacles of migraines disease reach far beyond our own bodies. Each and every migrainuer is different and experiences migraines differently, but diet, sleep, exercise, and, my favorite, stress management are all important pieces of the management puzzle. Keeping stress at a minimum is crucial both between and during migraine attacks, but it is difficult to say the least, especially when you are dealing with severe pain and nausea.
One of the best and most fun ways to combat pain and relieve stress is through the creative process. Coloring, cooking, walking, reading, writing, painting, photographing, birding, listening to music… Any tasks that involves focus and imagination quiets down the part of the brain that controls stress, the amygdala, and causes a stress-relieving response throughout the entire body.
“Fostering imagination as an adult is one of the most meaningful things to do for your mental health,especially if you are dealing with the high levels of stress that comes with chronic pain. Illnesses changes lives, abilities, and perspectives, and creative activities help tap into a deeper part of ourselves. It is precisely the creative and playful part of ourselves that we need to connect most to in order to process the experience of pain and best cope with it.”
A special thank you goes out to Teri Robert for her work with Healthcentral for Migraine and Headache Awareness Month. Be sure to wear purple all month to show your support and keep your eyes open for headache and migraine hashtags on social media.
It has been only four months since my last post, but in some ways it feels I’ve lived half a lifetime since then. Winter, or what passes for winter in mild southern California, has fully given way to spring. The finches at our backyard feeder are in full breeding pluming with vibrant red breasts and their mating songs are a welcome addition to the mostly mechanical sounds of the neighborhood. Mourning cloak and monarch butterflies are so abundant that one could (and sometimes I do) spend an entire afternoon watching them dance in the gentle breeze, occasionally landing on a milkweed leaf or a palm frond or even finding a partner or two to pirouette with.
As for me, I have been working very hard to steer my own winter towards spring. Unfortunately, my migraines have progressed from chronic migraine (15 or more migraine attacks a month) to chronic daily migraine. In essence, I no longer go through the four phases of a migraine attack, and I have symptoms of a migraine at all times, including but not limited to: light and sound sensitivity, head pain, fatigue, body aches, nausea, chills, neck pain, irritability, alloydnia (skin painful to the touch), vertigo, and tinnitus. Some days or parts of days are better than others, but I haven’t had completely migraine free days yet. I include my individual symptoms not in an attempt to garner sympathy, but as a gentle reminder to any of my readers lucky enough not to experience migraines themselves that they are so much more than just a headache!
Anticonvonsulants for Migraine Prevention and Their Pesky Side Effects
Because of my worsening migraines, I decided to drop out of the clinical trial that I was enrolled in so that I could fully focus on getting my migraines under control and take the preventative medications that conflicted with the trial. Unfortunately, the headache specialist at UCLA Neurology Clinic whom I trusted and had been working with for the past 18 months took another job and left the hospital right around the same time that my health got worse. She prescribed me a large dose of Depakote, an anticonvulsant that is used to treat both migraines and central nervous system sensitivity and is one of the few I had not previously tried, before she left. She warned me about hair loss and weight gain, but luckily I did not experience either.
I did, however, experience some pretty severe brain fog and tremors when I was later prescribed a second anticonvulsant, Topiramate (or Topamax), by my new headache doctor. Almost every chronic migraine sufferer is familiar with Topamax, as it is one of the most effective and commonly prescribed migraine preventative medications. The brain fog associated with it, however, can be so horrible that it is un-lovingly referred to in the migraine community as Dopomax. The side effects of the two anti-seizure meds on top of the daily migraines added up to an utterly miserable mess of me.
Propofol and Occipital Nerve Blocks for Refractory Migraine
By the time I met with my new neurologist I had been in bed for three months, had lost ten pounds, and was ready to try more aggressive treatment. She rcommended we try an outpatient procedure during which I would be anesthetized with propofol. While knocked out I would also receive nerve blocks to treat the damaged occipital nerves that begin at the base of the skull, wrap around the head and end at the eyes and may be causing some of my pain.
Studies have shown that propofol infusions can help some patients with migraines that do not respond to treatment, but I, sadly, was not one of those patients. The staff at the surgery center was so wonderfully kind to me, and my insomnia leading up to the procedure was so terrible that I think it was worth it just for the experience of a deep drug-induced sleep. Although, I could have done without the bill.
“Your struggle is your strength. If you can resist becoming negative, bitter or hopeless, in time, your struggles will give you everything.”
Our next try was an injection of DHE, a drug commonly used to abort migraines. Administered via injection or IV in a doctor’s office it has a high success rate at stopping ongoing migraines, particularly in people with episodic migraines. It was not my silver bullet, to neither mine nor my doctor’s surprise. At that point my migraine had been daily for five months, and I no longer expected to wake up in the morning without a migraine.
The real MVP in the DHE trial was my beautiful little sister who took me to the appointment and managed to comfort me with one hand while I car vomited and change lanes with the other on the 405 freeway at 70 miles per hour. Without her strength and empathy the miserable experience would have been much more miserable.
Cognitive Behavioral Therapy & Looking Forward
I am primarily housebound, as there are not too many places one can go when one’s symptoms are exacerbated by light, sound, and movement. I am working with a Cognitive Behavioral Therapist who deals exclusively with the elderly or the ill and we are constantly looking for new ways to adapt my skin and mind to my surroundings, so I can experience as much life as possible even with a migraine. Steadily and slowly I’m learning mindfulness, gratitude, gentleness, and pacing. It is a physically and emotionally trying journey and I sometimes leave her office overwhelmed with even more tips and suggestions of things I “should” be doing. Even so, I am working very hard and I have already seen quite a bit of progress on this road I am traveling that will hopefully lead me to remission or acceptance. But that is for another post.
I am slowly titrating off of the anticonvulsants that did not bring me relief under the guidance of my doctor and am so grateful to bid adieu to the tremors and the worse of the brain fog. I have implemented dozens of small lifestyle and supplement changes, which I plan to write more about in my upcoming posts if my head allows. Until then, I am focused on listening to my body, practicing healthy habits, educating myself as much as possible about my disease, and trying to suck as much joy as possible out of this beautiful and only life I have been given.