A Mental Leave From the Reality of Chronic Illness
By Kerrie Smyres | May 27, 2013
A dear friend from high school has generously offered me the guest room at her apartment in a Seattle suburb so I can escape the heat and storms of Phoenix in July and August. I’m so excited to spend time with her and to be in my favorite part of the country in its most beautiful season. I’m making all sorts of plans, sending her recipes for delicious food I want to make, imagining drinking gin and tonics while devouring the amazing summer produce of Western Washington, having picnics and going to concerts, taking hikes.
I’ve entered the land of magical thinking, somehow convincing myself that I will be able to savor all the pleasures of the Pacific Northwest as if I were in perfect health. Reality check: I may be able to cook for my friend, but I can’t eat anything I plan to make. Alcohol is out of the question. If the weather is unexpectedly rainy, being laid up with migraines is practically guaranteed.
I was in a good migraine spell when I made the plans to go. Everything seemed possible. Now I’m not even sure how I’m going to get there. I’ll need a car and money is tight, so I planned to drive and crash on friends’ couches along the way. Really? I’ve managed a seven-hour road trip by myself with chronic migraine, but it is 24 hours of driving time between Phoenix and Seattle. I can’t handle that by myself, especially if I’m not guaranteed a long, restful sleep each night. I can’t eat road food. Even if I recruit another driver, I’m not sure I can handle that much time on the road.
Every single day I am faced with the fact that I am not healthy and robust. How could I take mental leave of this reality when making summer plans?
I want out of chronic migraine.
Topics: Chronic Migraine, Coping | 5 Comments »
Emotions & Migraine, Revisited
By Kerrie Smyres | May 24, 2013
Writing about the possibility of a connection between suppressed emotions and migraine frequency prompted an influx of comments and emails with messages that have run the gamut from “hogwash” to “absolutely” to “watch out for charlatans.” Whether you’ve shared your reaction with me or not, your reaction probably falls into one of those three categories, so I want to address some of the concerns that people raised.
Emotions & Physiology
Emotions cause physiological changes in the body, from changing the heart rate to releasing chemicals. Maybe these changes are migraine triggers. Not enough is known about migraine to know whether this is the case.
Furthermore, studies have indicated that people who were abused as children are more likely to have chronic migraine than those who were not. Childhood abuse can literally change the way our brains work. Don’t believe me? Read about the neurobiology of childhood abuse in this fascinating, though technical, Medscape article Childhood Abuse and Migraine (you can get a password at BugMeNot). (I’m not saying I was abused as a child, just that traumatic emotional events can change our physiological responses.)
No Miracle Cure
I run from anyone who claims to have The Answer to migraine or says they will cure me. Anyone who makes these claims is arrogant and lacks knowledge about the complexity of migraine in general and ignores the reality of my 25 years of chronic migraine. The human body is not that simple and too much is unknown about chronic migraine for that to be the case. My therapist/naturopath has made no such claims, instead acknowledging that there are many factors contributing to my migraine attacks and that emotions may be one component.
Healthy Skepticism
Being open to an idea is entirely different than believing it is true. I need to gather more evidence before making a determination. As such, I’m approaching this hypothesis with the same skepticism I do any treatment, whether it is Lyrica, acupuncture, or homeopathy. In fact, I’m even more skeptical that opening myself up to feeling emotions will affect my migraine frequency or severity. I’m in therapy for my psychological well-being, not my physical health. If the work reduces my migraine attacks, that’s a bonus.
No Blame
I do not blame myself for causing my migraines by repressing emotions. Again, it is not that simple. If there’s a connection between the migraine attacks and emotions, whatever is happening is outside my consciousness. My body, brain, and/or “heart center” have figured out how to cope with being a highly sensitive person in this world and having chronic migraine to boot. This emotional self-preservation served me well enough, but now I’m ready to shed some armor.
Please believe that while my mind is open, my brain is not in danger of falling out, as the saying goes. I still evaluate ideas and treatments critically and support the scientific method. Writing about unconventional topics — like emotions and migraine, salicylate sensitivity, or histamine intolerance — is not the same as endorsing them.
I admit I’m open to more “out there” ideas than I have been in the past. However, I’m not advocating tossing out reason, nor have I done so myself. I am willing to consider the possible validity of ideas outside the scientific realm because so little inside of it has been of any use in treating my migraines. But I take them all with a giant dose of salt and proceed with extreme caution.
Topics: Coping, Mental Health | 1 Comment »
Depression Explained Compellingly and Hilariously
By Kerrie Smyres | May 23, 2013
Depression Part Two from Hyperbole and a Half may be the most illustrative, eloquent, and hilarious description of depression you will ever read. If you struggle with depression or know someone who does (and everyone falls into at least one of those those categories), do yourself a tremendous favor and read it now.
Topics: Coping, Mental Health | 2 Comments »
Goals, Dreams, and Chronic Migraine
By Kerrie Smyres | May 22, 2013
A headache specialist who also has migraine wrote an article about the importance of setting goals even if you’re mired in chronic migraine. I can’t find the article to share with you, but remember the gist being that having goals keeps you from succumbing to illness and gives you a reason to keep trying to improve your health. Basically, they give you the will to live.
I remember feeling defeated when I read that article a year or two ago. My goals were sitting on a shelf, put aside when getting out of bed and feeding myself were all I could manage in a day. They did not inspire me, but filled me with despair over all I had already failed to accomplish and everything it seemed I would never be able to do. Even though I felt better than I had in at least five years, I was still so sick. Goals did not feel like inspiration, but a reminder of defeat. What was the point in having goals, I wondered, when migraine demanded all my energy and attention?
That despair was temporary. Try as I might to pretend I had no dreams beyond finding an effective migraine treatment, my ambitions cannot be sublimated. As frustrating as it was to believe my dreams would never be fulfilled, it was even worse to imagine that my only role in the world was sitting on the couch in pain. The sentiment of that headache specialist whose name I cannot remember in the article whose location I cannot find were so true. Having goals keeps me believing that migraine will not forever dominate my life and that, even if I am, I will somehow contribute meaningfully to society. When my life feels unbearably small and worthless, these aspirations give me a reason to strive, even if getting out of bed will be my biggest accomplishment of a day (or week or month).
While the previous sentence would be a fine place to end this post, a reader asked me to share my goals with you. She said that reading about my aspirations inspires her to keep dreaming and believe in the possibility of fulfilling goals despite illness. Doing so has taken me months. Thinking privately about everything I hope to achieve in my life is hard enough with chronic migraine grinding me down. I have often felt like I would never even be able to begin pursuing my goals, much less achieve them. Declaring these dreams publicly feels like I’m committing myself to them, and that if I do not attain the goals I share, I will have failed. Because I know at least one person will benefit from my sharing, I will plunge in and trust that you will understand if I’m never well enough to follow through.
*Deep breath* OK, here goes.
Help people with the emotional turmoil of chronic migraine. In the last year, I’ve come to believe that my experience with and understanding of the emotions of chronic migraine is the most important knowledge I can share with other migraineurs. How I plan to do this, whether through writing, coaching, or even getting a counseling degree, depends on the day. Writing will likely prevail since it reaches the largest audience and I express ideas best in writing. I’m already doing this to some extent on The Daily Headache and Migraine.com, but I want to reach even more people.
Help non-migraineurs understand how serious and debilitating this condition can be. I’ve begun to see this as an extension of the previous goal. The facts about migraine are astonishing (my headache specialist shared some with me yesterday that literally made my jaw drop), but tugging at heartstrings is often more effective than facts. I want to write about migraine in a way that will touch those who believe migraine is just a headache and publish those articles in places that aren’t specifically focused on migraine (like Real Simple and O magazine for starters).
Write a book about couples’ communication and chronic illness. Since my background is in human communication (with a love of interpersonal communication), this screams “dissertation” to me. While the coursework for a PhD would be wonderful, the thought of negotiating university politics and slogging through comprehensive exams and writing with a committee makes me want to scream. Still, I’d learn so much from published research along the way and could gather excellent data for the book. I could massively edit the academic dissertation to make it palatable for the general public. Or I could skip the school stuff and do it myself. Compared to getting a PhD, writing a book looks easy.
Teach people how to bake. There are two “tracks” I’m thinking of: how to make typical boxed goods from scratch with little extra effort and how to make sublime cookies. The first is for folks who think baking is too hard. I’d teach the very basics of making cookies, cakes, and brownies, plus the tricks to make them turn out (like that over mixing after you add flour makes for tough cookies). Nothing overwhelming or complicated, just easy recipes and simple steps. Sublime is where the involved, time-consuming (though not necessarily complicated) recipes come in. These cookies are so good that even people who don’t like sweets are taken in by their delicious addictiveness (like my chocolate chip cookies).
Cook for people. “Love people, cook them tasty food” says the Penzey’s bumper sticker stuck to my recipe notebook. It is an eloquent summary of one of my life philosophies. I imagine it mostly as bartering, as I’m doing with a friend who is working part-time for TheraSpecs. She hates to cook and has a family to feed. I love to cook and want to do something when I have energy but am mentally foggy. I recently spent 28 hours over five days and made at least six weeks of dinners for her family. It was so much fun and I’m happy to know I’m nourishing the bellies and taste buds of people I love. Unfortunately, a week later I’m still paying for all that time on my feet and cheating on my diet as I tested recipes.
How heartening it is to see that I’m already making progress on some of these goals. Until writing them down just now, they all felt big and nebulous and way out of reach given my current health. Big goals are made up of tiny steps after all. I’ve been working toward my dreams without even realizing it. Migraine isn’t holding me back, just slowing me down.
Topics: Chronic Migraine, Coping | 3 Comments »
Migraine Activism: How Do We Make People Care About Migraine?
By Kerrie Smyres | May 14, 2013
“Yoda is wrong. There is only try.” I posted this on my personal Facebook page with a link to my Migraine.com piece in the hope that some of my Star Wars-obsessed friends would be intrigued enough to read the post. I want people to understand that not everyone is healthy and limited by their own perceptions. That for some people, including me, a person most of my Facebook friends care about, trying really is all there is.
The next, unrelated status update in my Facebook feed read, “Are you avoiding talking about race because it makes you uncomfortable or because you just don’t care?” “Huh,” I thought, “I don’t talk about race because I don’t have the mental or emotional energy to do so.” Because I don’t face racism on a day-to-day basis and instead spend my life trying to manage a debilitating chronic illness, the topic doesn’t come up for me much. On the rare occasion I’m having an intellectual debate, race may be mentioned, but it isn’t part of my daily life (nor are intellectual debates these days).
Answered in the frame of my friend’s binary question, I don’t talk about race because I just don’t care. That is so not true.
Everyone has a “cause” they want other people care about, whether it is race, homophobia, autism, or migraine. Yet, every “target” of a movement or campaign has a finite amount of energy and attention. We care most about what has the greatest impact on our own lives. This isn’t selfish or uncompassionate, but a matter of allotting our limited resources to cope with this incredibly difficult task called life.
I want nothing more than for people to understand how severe migraine can be and the emotional and physical toll it can take. I want this not only for patients and their loved ones, but for society as a whole. My friend probably has similarly ambitious desires related to race. Yet, instead of energizing me to action, her comment left me feeling guilty because my daily struggle keeps me from pursing other important problems.
We can’t guilt people into action, nor can we force other people to take up the fight for an issue that doesn’t impact their daily lives. How, then, do we get non-migraineurs to care? This is an issue I discussed many times at the American Headache Society symposium in November and every conversation raised more questions than solutions. I’m working on a list of ideas, which I will share soon.
In the meantime, I want to hear from you: What do you do to help non-migrainuers understand the potential severity and debility of this illness? What other things could be done, whether by you, patients and their families, advocates, or headache specialists? How do we make people care about migraine?
Topics: Chronic Migraine, Community, Friends & Family, Society | 7 Comments »
So Much Work
By Kerrie Smyres | May 10, 2013
“I’ve already done so much work on listening to my body/not blaming myself for being sick/having self-compassion.” I’ve told my therapist some version of this countless times already even though I’ve only had three sessions with her. It sounds even to me like I’m seeking accolades, but that’s not my motivation. I’m protesting that I’ve already done so much work and now I’m being told all that isn’t enough.
I’m tempted to say I don’t have it in me to do more, but that’s not true. After surviving years of horrendous migraine attacks and depression, I believe I can make it through anything. Compared to those years, what the therapist is asking of me is craft time at day camp. But I didn’t know how hard those years would be until I was in them. This time I can see how hard I’m going to have to work and how emotionally and, possibly physically, painful it will be. I don’t wanna do it. Can’t I get credit for all I’ve already done? Maybe test out of some of the requirements?
Also, I have to admit to bring a little surprised that there’s more to be done after I’ve already come so far. In the words of the brilliant David Byrne, “I’m tired of traveling, I want to be somewhere.” I know life’s a journey, not a destination, but I thought I could hang out on the beach for a little while. Instead, I’ve discovered I’m not only at the wrong airport, I’m on the wrong continent.
I’m tired and sick and tired of being sick. I’ve done the impossible to get where I am right now, both physically and emotionally. And still it isn’t enough. How many more mountains do I have to move? And are any of the resulting avalanches going to bury me alive?
(And have I won a record for the number of metaphors crammed into one post?)
Topics: Chronic Migraine, Coping, Mental Health | 2 Comments »
“Do or do not. There is no try.”
By Kerrie Smyres | May 9, 2013
“Do or do not. There is no try.” How could this quote from Yoda, which apparently inspires the world, piss me off? Read about it in There Is Only Try on Migraine.com.
Topics: Chronic Migraine, Coping | No Comments »
Numbing to Difficult Emotions Through Migraine(?)
By Kerrie Smyres | May 8, 2013
Could migraine attacks be my body’s way of numbing itself to strong emotions? “What a load of crap” is my typical response when someone broaches this subject. And yet today I find myself working with my accidental therapist on this hypothesis.
Some important points I must address before continuing.
- Migraine is a neurological condition that is not caused by emotions, repressed or otherwise. If emotions play a role in my migraine attacks, they are a trigger, not a cause.
- An emotional component is unlikely to explain the frequency and severity of my migraine attacks, however it could explain one part of my migraine puzzle.
- If this hypothesis is true, it does not mean that everyone (or, in fact, ANYone) else has an emotional trigger for migraine.
OK, back to the story.
Two weeks ago my therapist noticed that I expressed no emotion when telling sad stories and said she thought I was shut down emotionally. I balked. I cry at everything, how could I be disconnected? A couple days later, I realized she was right. Somewhere in the last year or two, I stopped being devastated by world events. I thought I’d found a healthy way to cope. Coping? Yes. Healthy? Nope.
I’ve listened to enough Tara Brach and Pema Chödrön to know that the only way to deal with an emotion is to feel it. So, over the next few days, when I felt an emotion, I meditated. I didn’t think about the emotion (my usual strategy, in case you couldn’t tell from my writing), but just felt it. It was very scary, but did not devastate me.
When I saw my therapist last Thursday, she was so excited to see that I’d put the pieces together. I not only recognized I was shut down, but knew how to remedy the situation and had already begun doing what needed to be done. I left thinking that the wide world of emotions was right there, just waiting for me to feel. Talk about scary. Less than two hours after the appointment ended, the longest and most painful migraine I’ve had in months came on.
Yesterday I dragged myself to see the therapist despite the migraine that hadn’t abated since it hit on Thursday. As I sat in the waiting room, I marveled at how the pain was “only” a level 6 and yet I felt like I was going to die.
The therapist (remember, she’s also a naturopath) asked me about when the migraine attack started and if I’d encountered any potential triggers. Then she asked me to describe how I felt at that moment. Among other descriptors, I said it felt like there was a veil between me and the world, that I felt disconnected, physically numb.
Ding! Ding! Ding!
She laid it out for me: I’m a highly sensitive person in a culture (and family) that advocates pretending like difficult emotions don’t exist. I don’t have a toolkit for dealing with these emotions that (used to) overwhelm me. Some people numb their emotions with alcohol, food, or other addictions. Instead of making a conscious decision to disconnect, maybe my body forces numbness by triggering a migraine. The migraine that hit last week may have been my body saying, “Whoa! Slow down!” when my intellectual instinct was to dive into feeling emotions I’ve apparently been suppressing for a while.
When the therapist asked what I thought of all this, I said something along the lines of “Screw that bullshit.” But I was willing to keep an open mind and work with the idea.
The migraine lifted within two hours of the appointment’s end. No hangover or anything, just poof! migraine’s gone. (Though another came on a few hours later.)
I want to believe the magical disappearance of the migraine is a coincidence; yet I also want to believe there’s a connection. That maybe there is an emotional component to my chronic migraines I’ve never considered before. That by learning to feel emotions in a healthy way, maybe I can improve both my psychological and physical well-being.
I’m scared and excited and want to get going. The therapist sees the last migraine attack as a warning to go slowly. I’m not sure I agree, but having a raging migraine won’t help me move forward. The plan is to focus on one emotion at a time (this week’s is frustration) and, when it comes up, sit with it for only three minutes at a time before consciously distracting myself with something else. Looks like I’m also working on that elusive skill of patience.
What do you think? Does this sound like hogwash or a possibility? Have you found an emotional trigger for your migraine attacks?
Topics: Chronic Migraine, Coping, Mental Health, Triggers | 5 Comments »
Migraine Jinx
By Kerrie Smyres | May 7, 2013
“The attack is as bad as they get these days (knock on wood) and I’m completely wiped out. While the pain is only a level 4, I feel like my bones are made of wet dishrags and my mind is as muddled as the mint in a masterful mojito.” Ironic that I wrote those words Friday in a post about migraine superstitions. I’ve spent every moment since then in level 5 or 6 pain and with a brain fog so dense there’s no chance of describing it with cute (annoying?) alliteration. My rational mind knows there’s no connection between what I wrote and writing about migraine superstitions and having a migraine attack; my migraine mind suspects this is my reward for tempting fate.
Topics: Chronic Migraine, Coping | No Comments »
Delaying the Inevitable With Triptans (Yet Another Migraine Superstition)
By Kerrie Smyres | May 3, 2013
Do you ever feel like taking a triptan only delays the inevitable? After three days in a row in which I noticed major tooth sensitivity (my current reliable prodrome symptom) and taking naratriptan within 30 minutes of its onset, a migraine has walloped me upside the head (pun intended). The attack is as bad as they get these days (knock on wood) and I’m completely wiped out. While the pain is only a level 4, I feel like my bones are made of wet dishrags and my mind is as muddled as the mint in a masterful mojito.
As I understand the science, triptans do, in fact, abort migraine attacks and each subsequent attack is a separate entity. But as a chronic migraineur, it doesn’t seem like that’s happening. Instead, I wonder if I would have gotten this migraine attack out of the way if I’d not taken the naratriptan Tuesday (and Wednesday and Thursday). Forget the fact that the weather is changing today and that I haven’t slept well all week. And that The Doctors’ description of TheraSpecs was spot on and the TheraSpecs site had great traffic yesterday, thus relieving my anxiety and potentially triggering a “letdown migraine.” These don’t factor into my superstitions.
As I think myself in circles, I wonder how many headache specialists grasp the magnitude of the mental and emotional aspects of migraine. Even though they aren’t trained to help us deal with these components, they should be aware of how deeply migraine affects not only our physical state, but our mental and emotional well-being as well. If I ruled the world, every headache clinic would employ therapists who understand migraine’s reach and can equip migraineurs with a toolbox to manage the non-physical parts of migraine.
I write this from a mental fog, so please excuse me if this meandering post makes no sense. I think it contains at least one important nugget of information, but I won’t know for sure until I re-read it after this migraine passes.
Topics: Chronic Migraine, Coping, Doctors, Mental Health, Treatment | 11 Comments »