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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.
Like Audrey Hepburn unfurling her wings in an intellectual jazz bar in Funny Face , I have been reuniting with my body and mind by making them dance. Quite literally in the case of my body, at my boyfriend’s band practice or to Beyoncé in my car. As for my mind, pirouettes twirl in the form of words and symbols. Reading, writing, creating, listening to music, and observing art all set my soul dancing.
I quit ballet rather suddenly the winter I was 12 years old. I had just graduated to full pointe classes and was at the studio for instruction or rehearsal three days a week. I received new leotards and permission to shave my legs as early Christmas gifts. The whiteblonde leg hair grew through the holes in my black tights and contrasted starkly. Thanks to puberty, my period, braces, circular Harry Potter glasses, and a new resurgence of migraines, my 12th year was crappy enough without the embarrassment of a leg-hair-ballet-tights situation. Luckily my mom was merciful, and I am not as easily embarrassed these days, so you get to hopefully find delight or commiseration in my awkward middle school self.
Dancing these days is much more relaxed – the dancing of a few beers, old friends, and a clear night sky. Or to an afternoon breeze through an open window, no witnesses to my lack of rhythm except the noisy hummingbirds outside. I watch monarch and mourning cloak butterflies in my garden dance, twirling around each other like in water. I twirl myself sometimes, around my nephew, his young friend, and a full shopping cart, trying to wrangle the three irrational beings. The music and din of market conversation is always so loud, the lights so bright, the experience such a dizzying rush that it feels like a dance performance. But we are rewarded at the finish with fruit instead of flowers.
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 a several neurologists and doctors over the years, and she always includes the exchange:
Mom: Please don’t tell me she has migraines.
Dr. Dias: I’ll 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.
[bctt tweet=”Thinking back to simpler sick days is a helpful reminder to take care of myself with love and empathy.” username=”CMLifeblog”]
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.
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.
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
You know how in certain nightmares you find yourself suddenly unable to move or react to a terrible situation? Something is chasing you or you are falling, and you are powerless to move your arms or legs. You fight and fight to move long after you know it is useless. The realization that you are powerless is terrifying, and you remember that terror long after the details of the dream fade from memory.
Severe pain is a lot like that nightmare. Disability is a lot like that nightmare. I hate the word disability, maybe because I have yet to make my peace with it. Disability is the only word, however, that does justice to the long weeks I’ve spent in bed with an intractable migraine (10 and counting). This period of severe pain and disability is a whole different beast than any physical or emotional situation I have encountered. This beast gets its power in its relentlessness. Every minute of every day I am in pain, almost always pain that is severe. It gnaws on me every minute of every day and tests every coping skill I’ve learned from years as a migraine sufferer.
“Illness is the doctor to whom we pay most heed; to kindness, to knowledge, we make promise only; pain we obey.”
– Marcel Proust
Everyday I wake up sick and in pain, and everyday I fight it. Like the mysterious enemy in those nightmares it traps me in my body and pins me to my bed. The realization that I am physically powerless hits me everyday with the same visceral terror felt in those nightmares. I fight it every day, though. I fight like hell to feel better every day, even if it often only highlights my powerlessness. Like in the nightmare, I can’t help but to fight and fight and fight. On the outside the fight doesn’t look like much: a smile, a shower, a few minutes spent out of bed with the people I love. Most of the time the fight is completely invisible to those around me just like the pain.
Pain changes your brain. It changes your mood, your perspective, and your thought process. It demands to be felt and it demands to be catered to. Migraines bring a host of cognitive effects that change your brain even further. They slow down your thoughts and make it difficult to pay attention to conversations or tasks. They cause brain fog that makes you forget your PIN number and the second half of sentences. I have been waiting for my pain to subside long enough to write, and now that it has it seems dishonest and maybe even impossible to write about anything other than this pain.
I started this blog around the same time I enrolled in a clinical trial for chronic migraines. I had high hopes that the trial would at least get my migraines under control and this blog would be about life with migraines, rather than migraines with a little bit of life on the side. Life and my brain had very different plans for me, apparently. Despite it all I don’t doubt that I am strong enough to make it through this period of crisis, especially with all of the love I receive from my family, my partner, and my friends. This migraine may be intractable but so am I.
“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.”