Coping, Resources

Mindfulness: An Amazing Tool for Coping With Migraine

“[T]echniques based on the Buddhist teaching of mindfulness have reliably been the most effective, helpful coping strategies I’ve used in my 25 years with chronic migraine. While plenty of people approach Buddhism as a religion, I think of it more as psychology; a collection of wise insights to help people live their fullest lives.”

Migraine & Mindfulness — “Bruce Almighty,” my favorite of the posts I’ve written for Migraine and Headache Awareness Month is now up on Migraine.com. No matter what your religious or spiritual bent is, mindfulness is an amazing tool, not only for coping with migraine, but with all of life’s stresses. To make this wonderful technique accessible to everyone, I focus on a secular approach to mindfulness in the beginning of the post, then include links to other incredible leaders who are more religious in their teachings.

Community, Coping, Mental Health

Is it possible to validate one’s pain and still live a life beyond bed when you’re chronic?

“Short and simple, Validating Your Pain is the First Step to Getting Stronger by Danielle LaPorte is astonishingly powerful in its approach to pain,” I wrote yesterday. My first instinct was to tell you it is an absolutely must-read article for anyone with chronic illness. I even wrote, “Read it now. Right now. Really.” Then I let the ideas simmer for a while and began to question how they could realistically apply given the constraints of chronic illness and pain.

Head on over and read the post. It’ll only take a couple minutes and the ideas are intriguing. Then come back to read what I’m thinking about it and share your impressions.

I love, love, love the thought that people with chronic migraine, including me, might stop denying the reality and severity of this illness to everyone around them, even themselves. Pushing through despite our debilitating symptoms, pretending we feel better than we do, brushing off others’ concerns. . . These strategies seem like the only way to survive, to have some semblance of a life while also having chronic migraine. But they also lock us in a battle against ourselves, where we’re constantly denying how we truly feel physically and emotionally.

“Validating your pain is the first step to sanity, strength, and healing,” LaPorte writes. My therapist has expressed a similar message. I’m listening. And I really want to buy into what they’re saying. Yet, I cannot help but wonder how to follow their lead and still get anything done. Three of LaPorte’s points tied my mind in contradicting thoughts of “That would be amazing” and “How is that possible?” They are:

Endurance can be a very unwise choice. As inevitable as emotional and physical suffering is, it doesn’t always serve to make us stronger — sometimes it just wears you right down. Sometimes, the test of strength is to say “This isn’t working,” the millisecond it’s not working.

Believe your pain. It’s not a friend you want to invite over, but when it does show up, it always — always — brings you precious information about what’s best for you.

Dare to be high maintenance. I bet you’re invincible in many areas of your life. But when you need it, ask for special treatment.

It is a good time to note that LaPorte does not have chronic pain, but extreme sensitivity to dental work. She’s talking about validating her pain a couple times a year. Applying her ideas to the daily life of chronic illness is so seductive. Imagine recognizing (and stopping) every time you’re wearing yourself down by trying to push through, listening to your body’s signals and resting accordingly, asking for special treatment. Sounds blissful. And utterly inconceivable, a life-sentence of confining yourself to bed.

Still, I want to believe that these concepts can apply to some degree and improve life with chronic migraine. I want to validate my pain and listen to my body, ask for help when I need it. For LaPorte, honoring her body and her needs leads to an effective treatment for her pain. Many chronic migraineurs don’t have the luxury of surefire way to manage their pain, nausea, dizziness, vomiting, photophobia, and numerous other migraine symptoms. Admitting our pain doesn’t get us a numbing agent, it just takes us away from living our lives.

Coping

Take the Hamster Off the Wheel: A Practice in Mindfulness

“[I]t’s like your mind is a hamster running on a wheel. Same old thoughts, day in and day out. You don’t really get anywhere except maybe an occasional breakthrough. When I [rock] climb, all there’s room for is the concentration on the gear and the next move. The thoughts stop, the wheel stops . . . the hamster is free.” -Critter (in Jump, by Elisa Carbone)

Sometimes a passage from a novel speaks to you so loudly it screams. Critter, a teenager who is wise beyond his years following a near-death experience, captured the essence of mindfulness so well that I’ve been using his image of a hamster on a wheel since I read it two weeks ago. “Take the hamster off the wheel” has morphed into “hamster, off,” which has the added benefit of making me giggle.

The only trouble is that sometimes I get carried away imaging the hamster curled up on a bed of wood shavings, its little nose twitching as it sleeps. My mental hamster is white with light brown spots and has an adorable pink nose. Although my mind is no longer churning on whatever issue is at hand, it is far from from the present moment as I wonder what the hamster is dreaming about. At this point, I simply think “churning” and try to refocus on the moment I am in.

Whether I mentally say “hamster, off” or “churning,” my shoulder and neck muscles release instantly. (Although thinking doesn’t always feel like stressing, my shoulders seem to think it does.) I relax and experience the present. For a few seconds at least, until the hamster starts running again. Then I gently remove it from the wheel and return to the moment. Again. And again. And again. Because the only sure thing about practicing mindfulness is that your mind will wander.

Chronic Migraine, Community, Coping, Mental Health

All Migraineurs Are Different — So Stop Judging Me!

I’ve been fortunate to receive very little negative feedback on this blog. Yesterday was one of the rare days that another migraineur left a rude comment. In response to the post Showing Others What a Migraine Attack is Really Like, Lynda wrote:

I think you should worry that you are clinging to your migraine to define you and that you wouldn’t know who you were if the pain went away, so it is helping you by not going away. I am a chronic migraneur as well, every week, I lose a night of sleep at least and two days to a horrible headache, but I have managed them for 2o years of work and supporting a family and myself. yes there are days I must come home. but oddly my headaches wait til friday night to take me down so I can perform my tasks. I question your will when I read your attitude. You are lucky to have your husband or you would die, or wake up.

There are so many possible responses to this. I can hear the universal mom’s voice telling me to ignore the meanie and not share her comment with you at all. That Lynda is just jealous and I’m giving her more attention than she deserves. Buddhist psychology would say she is lashing out from her own pain or fear and that her words have nothing to do with me. There’s the snide part of me pointing out that losing two days a week to migraine does not meet the clinical definition of chronic migraine, which is 15 or more migraine days a month15 headache days a month, at least eight of which are migraine. The martyr also rears her head — “I’m sorry you’re suffering so much. I hope lashing out at me has brought you some relief.”

Underneath all these possible responses swirling in my mind is the most puzzling part to me. Why? Why does one migraineur feel the need to judge another’s experience? Why do so many migraineurs assume that their migraine attacks are representative of everyone else’s?

Migraineurs and their migraine attacks are all so different. The definition of chronic migraine encompasses a vast range of pain levels and numerous possible symptoms. There are people who have 15 migraine attacks come on each month, but are able to abort them with triptans before the pain even begins. Then there are people who have level 8 or higher pain every single day. That’s right, one chronic migraineur can experience no pain at all while another has daily pain on par with childbirth, according to this excellent comparative pain scale from TIPNA.

As confused as I am about why people are so mean to each other, I also  feel the sting personally. I write this blog to help myself cope with and comprehend daily headaches and nearly daily migraine attacks in the hope that I can help others who face similar challenges. I share my most vulnerable thoughts and describe moments I would rather no one ever know. Only in the last year have I opened up completely, sharing what my days are really like and that the emotional cost of migraine is so high that I have considered suicide. A weak person would not open up in the way I have, though it has taken more than a decade for me to comprehend how strong I truly am. Yet I still fall prey to the internal voices that question the severity and validity of my illness. External voices are not welcome in the choir.

The havoc that migraine has wreaked on my life and my identity is immeasurable. I have accepted migraine as part of who I am, but the only way it defines me is in the tremendous resolve I employ to keep it from overtaking me. In no way do I cling to this illness for my sense of self. Instead, the opposite is true as the illness attempts to suffocate my personality. The moments in which migraine is not at the forefront are blissful. I had a few good hours last night, dancing and baking and laughing. My identity shines when I am not in the throes of migraine.

Just as I have not let a lifetime of migraine dominate my sense of self, I will not allow one person’s meanness bring me down. Thanks for the armchair psychological assessment, Lynda, but you are completely wrong. Well, not completely — I am incredibly lucky to have an emotionally supportive husband who is able to support both of us financially. It is quite a stretch since he lost his job last year and is starting his own business, but we are making do for now. Without him, I would be living with my mom and spending all of my low-migraine-pain time trying to earn money. Now I just spend most of my low-migraine-pain time trying to earn money; in the rest I can dance and bake and laugh. For this I am immensely grateful.

Plenty of weeks go by when I am too sick to even laugh, but the small bits of time I allow myself to do what I love keep me from withering away in bitterness and resentment. I hope you the same for you, Lynda, and for every reader of this blog. Seeking joy wherever you can find it is imperative in a life with migraine. Without it, misery becomes the disease.

Coping, Mental Health, Symptoms, Treatment

The Exhilaration of Irrational Hope: Trying a New Treatment

In a few hours, I’m getting my first occipital nerve block. Sunday I was elated by the possibility for relief, thinking about how, if effective, the treatment would change my life. Yesterday my thoughts changed from “would” to “could” and I became skeptical that it will help. Today I’m just hoping that it doesn’t trigger a migraine attack. This wide range of emotions, from an almost manic excitement to a dread of disappointment, is familiar territory — this is what I feel every time I attempt a new treatment. No wonder trying new treatments is so exhausting.

Mindfulness would eliminate (or at least drastically reduce) this emotional torment, if I could put it into consistent practice. Despite all the wonderful coping skills mindfulness has given me, I resist applying it in this situation. The exhilaration of irrational hope briefly alleviates the difficulties of life with chronic migraine. It counters the pain, nausea, dizziness and distressingly heightened senses of a migraine attack. It provides a glimpse of a glorious (fictional) future that I don’t consciously allow myself to think about, but such indulgence is OK in the context of exploring the outcomes of a possible treatment. Though brief, the high is wonderful.

Like all drugs, irrational hope has a horrible letdown that lasts much longer than the high ever could. Yet, I haven’t been able to break the habit, nor am I sure I want to even though it goes against my general philosophy for how to cope with chronic illness. Any attempt at a new treatment, whatever the outcome comes with a new understanding. For me, that is often the knowledge that yet another treatment has had no positive effect. Even if the treatment works — and I’m speaking from limited experience as I’ve only had two treatments be even slightly successful — there is a period of adjusting to the amount to which it works and the impact it has on one’s life. If I’m going to have to learn to cope anyway, acknowledging that my fantasy of a miracle cure hasn’t materialized isn’t much bother.

As I was procrastinating while writing this post, I saw on Facebook that How to Be Sick author Toni Bernhard shared this apt quote from Brother David Steindl-Rast: “People who have faith in life are like swimmers who entrust themselves to a rushing river. They neither abandon themselves to its current nor try to resist it. Rather, they adjust their every movement to the watercourse, use it with purpose and skill, and enjoy the adventure.” I love the idea of embracing such faith in life as I embark on new treatments. Right now, though, I’m too addicted to the high of irrational hope to entrust myself to the river.

I wasn’t able to edit this piece in time to get it posted before the nerve block this afternoon, which means I can fill you in on how it went. The injections were horrifically painful and I nearly fainted (apparently, this happens to about 10% of people). Good news: the block reduced level 6 pain and to a 3 within 10 minutes. Bad news: it was back to a level 5 within two hours and I’ve spent the rest of the day in level 5 or 6 pain. I’m hopeful that the injections just irritated the nerves and I’ll be better in a day or two.