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You Are Not Your Pain: An Introduction

I was both eager and skeptical to read the book You Are Not Your Pain [Amazon affiliate link], which I received a free copy of for review. The book is a self-guided, pain-focused mindfulness-based stress reduction course that includes audio tracks of guided meditations. I was excited to read the book because I’ve been searching for an inexpensive DIY guide to MBSR to recommend to readers since I took an in-person course in 2008. None of the options quite fit. Until I found You Are Not Your Pain.

Even though authors Vidyamala Burch and Danny Penman have chronic pain themselves, I was skeptical that they had the authority to really understand what it’s like to live with pain. I’m not proud to say I questioned their credibility, but I did. Reading their stories made it seem almost too easy. Like their symptoms were mild and non-disruptive to begin with, so applying mindfulness was no trouble for them. I was wrong. My misperception was a result of the authors distilling their stories so they wouldn’t overshadow the book’s content. After all, this is a guide to mindfulness, not a memoir.

I was fortunate to be able to ask Vidyamala Burch, one of the authors, the questions that arose when I read the book. Her responses were thoughtful and detailed. Instead of just printing the interview, this post is the first of a six-week series that uses her replies to explain concepts of the book. Even if you have no interest in the book, these posts contain valuable information about coping with chronic pain. The topics I (and Vidyamala) will address include:

  • This Moment: When I was my sickest, I would go to bed wondering how I would get through each day. Similarly, Vidyamala did not think she would be able to make it through the night when she was in the hospital with severe pain. She describes the thought that got her through that night and subsequent nights. And started her journey with mindfulness.
  • Primary and Secondary Suffering: A central concept of the book is that pain has two components, the physical sensation and our emotional reaction to the physical sensation. We cannot control the pain, but we can control our reaction to the pain. Before I grasped this concept, it seemed like a minor distinction that wouldn’t do much good. Now it is an essential part of my coping strategy—it’s quite possibly the one I use the most in all areas of my life.
  • Mindfulness Practice: Overcoming Discouragement: “This can’t possibly work for someone who is as sick as I am,” I thought as I gave up on my first MBSR homework three minutes into the meditation. Eight years later, the visceral memory of that first meditation is so strong that I asked Vidyamala about it. The experience was familiar to her, too.
  • Mindfulness for Non-Pain Symptoms: The book is focused on pain, but the principles can apply to other symptoms (and, really, to life well beyond illness). Vidyamala explains how she uses mindfulness to manage fatigue.
  • Beyond Mindfulness: Mindfulness-based stress reduction is a secular approach that applies the Buddhist principle of mindfulness to pain, illness, and stress. The more I learned about mindfulness, the more curious I became about Buddhism. It turns out many Buddhist practices can help with managing pain and illness (and aren’t inherently religious). Vidyamala talks about the ones that she employs regularly.

TL;DR: Read You Are Not Your Pain if you’re looking for a way to cope with any illness that causes frequent or chronic pain. Commit to doing the guided audio exercises 20 minutes a day for eight weeks for an inexpensive DIY mindfulness-based stress reduction course.

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Migraine Mood Changes: Depression-Like Symptoms

migraine-mood-changesI was standing in the bedroom alone with my eyes closed, taking deep breaths. I didn’t know Hart had entered the room until he asked, “What’s up?” “I’m nervous about you leaving,” I said, and the tears I’d been keeping at bay burst forth.

Even though I don’t have an anxiety disorder, I have subclinical levels of anxiety in two situations: sleeping when I’m home alone all night and when Hart travels long distances. The Fourth of July brought both of those. During a migraine attack. It led to one of a handful of full-blown panic attacks I’ve ever experienced. It was horrible, but made a lot of sense in retrospect. For the few weeks prior to that night, migraine attacks were going straight for my mood.

I first noticed it during a migraine attack on Father’s Day. I had to stop looking at Facebook posts because they made me miss my dad too much. This isn’t abnormal in the realm of grief, but I also cried when I realized that the attack would keep Hart and me from enjoying our day’s plans. Even that’s an understandable reaction to the situation. Becoming racked with guilt when the precarious stack I’d built in the freezer caused Hart to drop a container is not normal. Instability in the freezer is a common occurrence in our household and it’s usually my fault. The container didn’t break and Hart wasn’t upset, but I felt like an utter failure. These are all indications of depression, but my mood returned to normal with that particularly intense migraine attack cleared.

Migraine attacks bring major mood changes for me maybe a dozen times a year. The experience is unpleasant and unpredictable, but never enduring. Until this summer. During many, but not all, of my migraine attacks over a three-week period, I cried at song lyrics that wouldn’t normally make me cry and was quick to anger in low-stakes situations, like not being able to find the pen I wanted to use. These are telltale symptoms of clinical depression for me. So much so that my doctor wanted me to start another antidepressant.

I held off on the meds for a week because it just didn’t feel right. It didn’t follow the pattern for depression. Then again, it didn’t follow the pattern for migraine mood changes, either. Still, I watched and waited. By the time that week was up, mood disturbances were no longer regularly part of my migraine attacks.

Migraine symptoms are so weird. (I swear I say that at least once a month.) They’re both predictable and unpredictable. I expect to have associated mood changes occasionally, but this is the first time I can recall three weeks during which many attacks were accompanied by depression-like symptoms. I’m wondering if the uptick was caused by a short-term change in my brain similar to what my doctor described when I suddenly became sensitive to Wellbutrin’s side effects:

The brain you have after a migraine attacks is not the same brain as you had before it. Any medication that acts on the central nervous system, like antidepressants, could interact with this new brain in a different way than before, causing an increase in side effects. My dose hadn’t changed, my brain had.

The changes to your brain after an attack are not permanent, so please don’t let this scare you. It’s more like a storm with high winds came through and there’s still dirt and debris in the street. The street sweeper will get to it eventually, but it may take some time.

This explanation makes intuitive sense. The Father’s Day migraine attack that kicked all this off was particularly intense and odd. My thinking was way off. Despite being drug-free, I was thinking as if I’d smoked marijuana. That’s never happened in quite this same way before. Perhaps the celery that triggered the attack was genetically modified to have a psychedelic effect.

Whatever the explanation, the problem seems to have subsided for now. My mood has been stable for about a month. I’m grateful for the increased empathy that came from my tiny glimpse of insight into what panic attacks can be like. And I will be grateful if I never have to experience one again.

 

(In case you’re curious, the grief I’ve been wrestling with this summer has been entirely independent of migraine attacks and migraine mood changes.)

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If Only I Could Keep Running From Grief

Pleasant emotions = good

Painful emotions = bad

These two equations summarize American society’s approach to emotions. We’re taught to strive for emotions that feel good as if seeking higher ground in a tsunami and to run like hell from ones that hurt.

I wrote two weeks ago about slamming the door on my unwelcome houseguest named Grief, trying with all my might to keep it locked away. Grief did not comply with my wishes, not until it ripped the door of its hinges and I gave it the attention it demanded. This behavior is not unique to grief, nor is it a noteworthy show of strength. It’s what all emotions do if you try to ignore them for very long.

The most remarkable lesson I’ve learned about emotions is this: it is (almost always) easier to let myself feel an emotion than it is to try to run away every time one I’m afraid of pops up. Even more remarkable? Unless you feed the fire, stoking the flame with your thoughts, an emotion only lasts 90 seconds. Seriously. A minute-and-a-half.

If this is true, why did I tell you I spent a week avoiding my grief? Why did my therapist (of all people!) say that I was being skillful when I blocked myself from feeling grief? It’s because I was making a deliberate choice. As I said, it’s *almost* always easier to experience an emotion than it is to have it haunt me when I’ve tried to run away. Almost, but not always.

It has been a difficult year. I swear that phrase has been in 95% of the drafts I’ve written since January. It’s actually been a difficult 18 months. When the DAO stopped being sufficient for staving off my eating-triggered migraine attacks, I learned that I no longer only had to grieve for everything I had lost. I also had to grieve for the future I’d finally begun to trust was mine. The ketogenic diet is the last diet-based intervention available to me. When it wasn’t a slam dunk, my grief began to grow. May and June were particularly difficult emotionally.

I’ve been working with my therapist on this grief as it has come up. At the end of June, we decided to dive deep to see if I could face the grief and move on unencumbered (or at least less encumbered). That day was the most horrible, gut-wrenching experience I’ve ever had in therapy.

I used to run from my emotions because I was afraid if I felt them, they would devour me whole. That therapy session felt like I was being eaten from the inside. My stomach churned. My leg muscles seized up. Each time I tried to relax them, they would clench even more. My chest kept tightening and my breath became hard to catch. Although she usually lets me lead the work, my therapist told me it was time to stop. She said I was locked into an extreme flight response. Fortunately, she had a free hour to spend calming me down. I had a grief hangover for a couple days, but that was the only lasting repercussion from the session. Well, that and a fear of what would happen the next time I let grief in.

My therapist and I decided to put the grief work on hold for a while. We check in every week to assess my grief level and how I was dealing with it. I explained how I let myself feel it when it comes up, but only for a short while, then distract myself and move on. This is the behavior she said was skillful. The skill was in recognizing the emotion and choosing to move toward or away from it. I haven’t run from grief reflexively, I have chosen to keep it out of my house. Until it beat the door down.

Writing that post actually kept grief from taking me down. Acknowledging the strength of my grief was enough of a catharsis to last nearly a week. But I knew it wouldn’t hold much longer. Last Tuesday, I told my therapist I was finished running. We revisited the grief work, this time with a gentler approach we tried last month.

I talked about how small my world feels and how migraine prevents me from traveling, working as much as I’d like, seeing my friends, and making new friends. I spend so much time policing my diet in an effort to stay semi-functional, but I’m not really gaining ground. It’s more like I’m standing still and trying desperately to keep the dirt from crumbling away from beneath my feet. I still don’t feel as good as I did in 2014 and I feel like I’m constantly one step away from falling off a cliff.

For me, successful migraine treatment means I can do the things I most enjoy in life. I don’t have to be migraine-free, pain-free, or symptom-free to do this. I spend most of my energy on migraine management, yet it’s still not enough to let me work and play and travel and spend time with loved ones. Migraine continues to dominate every single day. Food, one of my life’s great pleasures, is a chore and a source of pain.

I work so, so hard for so little reward. I am so, so worn down by chronic migraine.

My therapist listened to me and validated me. When the session was almost over, she asked how I was doing. I said that I felt like I needed to curl up and cry for a while. After we said goodbye, I sobbed for an hour. It was an ugly, painful cry that sapped the small amount of remaining strength that I had. I napped and read and took it easy for the rest of the day. I was better the next day, but still tired, sad, and a little lonely.

I know the popular American emotional equations don’t add up. I sometimes wish they did. Running seems so much easier than feeling this pain. I know it is not. I know I can’t outrun it forever. But in times this heavy, I wish I still believed grasping for pleasant emotions would render painful ones obsolete. I wish I still believed in the American way.

I wrote this last Wednesday, but it didn’t post because of a technical problem. As often happens, I felt much better after writing it. I chose to post it today as I wrote it originally because it’s an honest reflection on how wrenching working through deep grief can be. But now you need to read the alternate ending:

I ran from grief because it seemed like the only way I could survive the pain. Even in the immediate aftermath of doing the grief work, I wished I’d kept running. But after a short recovery time, I felt lighter than I had in months. Grief is no longer waiting to ambush me from inside books or thoughts or scenic vistas. I neutralized its power when I stopped running. I don’t believe in the American way of dealing with emotions because my life has shown me time and again that the equations just don’t add up.

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When Migraine Grief Refuses to Be Ignored

Migraine grief: Chronic Migraine keeps calling Grief and inviting it over to visit.Grief barged in at 3:18 a.m. It wasn’t too surprising—I’ve been slamming the door in its face for a week.

Facebook shows me Spanish tortilla with red peppers and peas. I want to read how the Cook’s Illustrated staff iterated to create the perfect dish, but know it will fill me with unbearable longing. I do not click through. Slam!

A character in a book mentions traveling to Ireland. Unbidden images of rolling green fields and castles fill my thoughts. Slam! The door is closed before I even realized it had opened.

But Grief keeps pushing its way in. Australia, New Zealand, Patagonia, Iceland—all the places I long to go, all the places I’ve been trying to avoid thinking of—scroll through my mind. Slam!

I throw my back against the door to prevent it from opening again.

Still, scones, chocolate chip cookies, and multigrain bread work their way into my thoughts. Slam! I cannot staunch these visions quickly enough. Not only can I not eat these foods, I cannot bear to bake them. The double loss threatens to invite Grief to become my roommate.

My efforts aren’t enough, so I erect a more permanent barricade in front of the door.

My therapist asks me to rate how severely I am grieving on a scale of 0-10. “Seven, when I let it in,” I say. After some back and forth, she tells me I am responding to my emotions skillfully. That to see Grief pounding on the door and choose to leave it on the doorstep because I can’t deal with the imposition is a healthy reaction.

The barricade works. What a relief.

Grief slips in through the forgotten crack at the bottom of the door.

Attempting to add pomegranate to my foods-I-can-eat list, I am rewarded with six hours of a migraine attack. I go grocery shopping when the attack lets up. Grief climbs into the cart and fastens the seat belt.

I try to push Grief aside as I fill the cart with the foods I can eat: romaine lettuce, butter lettuce, asparagus, red peppers, green peppers, watermelon, chicken breast, cream, butter. That’s it. Grief laughs. It reminds me over and over how fucking unfair it is that eating is my migraine trigger. It tells me I will never again eat peaches without paying in pain. It says that all my work to determine my triggers won’t actually result in fewer migraine attacks.

Grief hangs out for several hours. I feel boring and needy as I register the same old complaints with Hart. I have nothing new to tell him on this front. Grief keeps coming back for the same reasons it did last month, last year, last decade. No matter how much great work I do in therapy, Chronic Migraine keeps calling Grief and inviting it over.

Talking to Hart makes me feel better. I choose to change the subject and toss Grief to the curb again. Slam! I put the barricade back up and shove a towel in the crack under the door.

I find Grief lying in bed beside me when I roll over at 3:18 a.m. I’m too tired to try to kick it out. We talk for a couple hours, then Grief lets me go back to sleep. I suspect the reprieve will be short.

I awake in the morning to see the door hanging by its hinges. I can no longer deny Grief entry into my home. It is adamant that I entertain it right this second.

Grief and I have spent so much time together that I know exactly what to expect. Grief will detail everything I have lost to migraine, it will predict a future based on past scenarios, it will remind me that my actions have been futile thus far. I will cry until I am spent. Grief will ignore my exhaustion and overstay its welcome. (To do otherwise would be impossible; we both know it was never welcome.)

After Grief has its say and I regain some strength, I will tell it to leave. I will have to repeat myself multiple times before Grief finally complies. I will rehang the door and shut it gently. I will sigh in exhaustion and relief, hoping to have at least a few days of peace before Chronic Migraine summons grief to my door again.

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Success and Chronic Illness

Can success and chronic illness coexist?“Not succeeding as I know I could feels an awful lot like failing.” I have struggled for years to comprehend how success and chronic illness can coexist, but texting those words to Hart Saturday night took my breath away. This puzzle has been Since my year-long reprieve from eating-triggered migraine attacks ended last spring, my mind has been churning particularly hard to understand what success means when I’m too sick to live up to my potential.

I’m not writing this for reassurance. I know my work is valuable and my words connect deeply with people. I see humbling comments from readers every day. Still, I want to do more. I have more to give. My body won’t let me give it.

*****

The first day of every American Headache Society conference, I eagerly pore over the schedule and abstracts. I’m so excited to see who is speaking and what I might learn. I know I may not make it to every talk, but love exploring the possibilities. I did that Wednesday night (following the Thai restaurant meltdown), then spent Thursday and Friday laid up. Time ticked by while I thought about the sessions I was missing and the people I wasn’t getting to see. 

By Friday night, I was a surly mess. That’s when I wrote the first part of this post. This year has been difficult emotionally; the last few weeks have been especially rough. Missing the conference was not surprising given my health and San Diego’s June gloom. But it hurt nonetheless.

I finally made it to the conference Saturday afternoon. It felt so good to be there and I had a great time catching up with people I know and meeting others I’ve known online, but hadn’t met in person. I visited the exhibits and learned what products are in the pipeline for treating migraine and cluster headache. The eight hours I spent at the conference energized me and negated the difficulties of the previous few days. I left fully aware that I’m not succeeding in the ways I know I can, but was also cognizant of how much I’m doing despite significant physical limitations.

I haven’t given up on realizing my potential. It’s frustrating, but it’s also tremendous motivation. I want to get better because I have so much to do in the world. On difficult days, not achieving as much as I’d like does feel like failure. When I step back from that emotional reaction, though, I can see that every little bit is progress toward my larger goals. Part of me despises having to celebrate my successes despite migraine, but the rest of me knows that my struggles make my accomplishments even more worthy of celebration.

I believe I will reach my goals one day. I have to believe that. Even if I don’t know when it will be.