Chronic Migraine, Coping

Remembering Pain (with Awe & Amazement)

People say that humans can’t remember the physical sensation of a painful event after it has happened. We can remember the emotional and cognitive experiences, but not the actual physical pain. I can’t find solid evidence for whether this commonly held belief is true, but I’ve just tested it and have to say that it is for me.

Last week I had the first level 6 migraine I’ve had in months. The worst of the pain only lasted an hour, but I spent that hour marveling at how much pain a level 6 migraine could bring. Level 6! That’s at the LOW end of my severe pain scale. For many years, level 6 pain was a reprieve from higher daily pain levels.

When I got beyond thinking “Wow, migraines really hurt,” I moved onto the question that continues to baffle me: How in the world did I survive? This quotation from Anna Quindlen that I shared in The Daily Slog of Chronic Migraine provides a partial answer:

And then sometimes we become one of those people and are amazed, not by our own strength but by that indomitable ability to slog through adversity, which looks like strength from the outside and just feels like every day when it’s happening to you.

I survived because this was the normal life that I slogged through each day.

I survived because the alternative is a choice I wasn’t willing to make.

I survived because I am stronger and more courageous than I ever thought possible.

From the many readers I have heard from over the years, I know these traits aren’t unique to me, but are common among those who live with a headache disorder, chronic pain or chronic illness. You and I and everyone else who wakes up with debilitating pain and illness each day — we’re pretty incredible. Whether or not we go to work or make dinner or even get out of bed, we overcome the insurmountable every single day. We are awe-inspiring.

Chronic Migraine, Coping

Perspective

Hart: How do you feel now?

Kerrie: You know, it’s not too bad. It’s like a hot steel rod is poking through my left temple and out my eyebrow.

Hart: Um, not many people could fathom how that description would constitute “not too bad.”

My entire head wasn’t throbbing and the brain fog and fatigue were slight, so the sensation of a metal poker wasn’t a big deal. As far as migraines go, it was pretty mild.

And that’s another thing Hart has called me out on recently — the idea that any migraine could ever be mild. Compared to the migraines that are strongest in my memory, the ones I’ve had lately are positively benign.

The perspective that allows me to classify a migraine as mild is one I’d prefer to never have gained, though now that I’m through the worst days (for now, at least), I’m glad to have it. It’s the biggest cliché of illness, but I really do appreciate every day that I feel OK in a way a person who has always been healthy never could.

Learning this lesson was excruciating, but reaping the rewards of it is nothing short of amazing. Going though each day aware of how fortunate I am to have it is a wonderful, joyous way to live.

Chronic Migraine, Coping, Favorites, Friends & Family

The Silencing Effect of Chronic Illness

“Sometimes the accumulation of his silence seamed to heap upon him, as slowly as snow, until he felt he could no longer be seen.” –Mr. Panicker (a character in “Aerogrammes,” by Tania James)

And sometimes I lose my breath when lines in a story are so applicable to life with chronic illness. Whether a person withdraws from others due to devastating physical symptoms, a lack of understanding from others in our lives, the clinical depression that’s comorbid with so many illnesses, or yet another of the myriad factors for social withdrawal, chronic illness is incredibly isolating.

I cut myself off when my attacks are severe because it takes more physical and mental effort than I’m capable of giving.Unfortunately, that’s meant years of silence in some cases. Even when I feel “better” (my version of better being far sicker than a healthy person’s idea of well), my energy is so limited that I often spend it all on the minutia of daily life rather than socializing. While I’d very much like to reconnect with my loved ones, the day-to-day tasks feeding myself, seeing doctors, doing laundry, wrangling with health insurance, and working have to come first.

Just like Mr. Panicker’s silence accumulates, so do the symptoms of chronic illness. As the symptoms pile on, a patient can become unrecognizable to even ourselves. How can a person connect to others if they don’t even know who they are anymore? I used to dread having to talk about my life. I had nothing to talk about other than illness, the severity of which I was unwilling to acknowledge. My days were solely dedicated to survival and not in an exciting I-defeated-a-grizzly-bear kind of way, but of the can-I-go-to-the-bathroom-now-or-does-it-hurt-too-much-to-move, I-must-feed-myself-so-hunger-doesn’t-trigger-a-migraine variety. Now, I’m more willing to talk about illness and I’m more aware of how much work I do every single day, but I still often think my life must look terribly boring to other people.

The stigma of chronic illness imposes yet another kind of silence. Some people don’t feel like they can talk about their illness without sounding like a complainer, so they just don’t say a word. Others always have to put a positive spin on it, focusing on some miniscule change or possible new treatment. (I’m guilty on both accounts!) Then we encounter the numerous healthy people who are afraid of chronic illness or think they have the answers, forcing their beliefs or cures or stories on us. In these ways and many others, those with chronic illness, like Mr. Panicker, are unseen.

It’s not that people with chronic illness want that illness to be at the forefront of every interaction. We don’t want to be singled out or pampered or treated any differently, but we want to be seen. We want to have all the aspects of ourselves recognized and illness is one part of who we are. When someone tries to deny our realities and experiences or forces a “cure” on us, they aren’t seeing us for who we truly are. For me, that’s what hurts the most — when a person can’t be bothered to see all of me, chronic migraine included, and see what an amazing feat it is that I get out of bed every day.

It took me many years to accept that the people who tell me I’m brave are right. I am courageous and strong for trying to live a full, happy life when I have a debilitating chronic illness. I can dismiss the people who call me weak because I am sick because I know they are wrong. It’s the people in-between, the ones who don’t blame me, but also think I would get better if I tried harder or the ones who gloss over the role migraine plays in my life that I get most frustrated with. Those who make the effort to see me for who I truly am, who are not afraid to acknowledge my illness, are the only people to whom I feel deeply connected.

Again, I don’t want to be only seen as a person with chronic migraine, but to have all the aspects of my identity — good, bad, messy, complicated — to be acknowledged. Illness isn’t all that I am, but it’s a huge part of me. A part that makes my life difficult and my triumphs noteworthy. Denying or ignoring the role of chronic illness in my life invalidates the tremendous achievements, the emotional fortitude, the unbelievable strength I display every single day.

 

Coping

Chronic Migraine Time Management… and More Self-Doubt

While time management for accomplishing daily tasks on schedule despite chronic migraine still eludes me, I’ve found a system that works for me for big activities, like a party, travel, or even attending an important work function with Hart. I have to budget my time very carefully. I plan out everything I need to do, break it down into small tasks I can reasonably expect accomplish each day, and allow for a few extra days in case I have to take a day off. I always give myself way more time than I think I need and work in time to rest as well. I focus all my energy on these specific tasks and set aside everything non-essential.

I’ve just arrived in Seattle where I’m house sitting for the rest of the summer to get away from Phoenix’s monsoon season. Getting here has been convoluted. My mom, who lives outside of Portland, OR, is lending me her car this summer. Monday I flew there and spent the evening with my family. Tuesday I drove to Redmond, WA, to stay the night with a high school friend. Wednesday I picked up groceries (I’m still on an über strict diet that requires making all my food super fresh and freezing it) and moved to the place I’m house sitting for three weeks. This was all after spending last Thursday to Saturday in Flagstaff, AZ. I did some packing for Seattle before Flagstaff, then dedicated Sunday to finishing that up.

A healthy, energetic person wouldn’t find this schedule taxing; I found it stressful and exhausting. I’m more than a little embarrassed about that. Most of my years with chronic migraine, I have pushed myself constantly, pretending that I had a healthy body that could withstand a normal schedule. In admitting that I don’t and I can’t, I’m able to manage life and cope with the migraine attacks a lot better. I am mostly happy with it in my day-to-day life, but writing about it publicly is uncomfortable.

Admitting how much effort I expend to accomplish so little is humiliating. I hear the voices of all the people who have told countless migraineurs (and those with many other chronic illnesses, I’m sure) that we’d get better if we only tried harder or worked at it more. Despite knowing that method is not only fruitless, but counterproductive for me (and probably for most people with chronic illness), I still feel ashamed to share the unimpressive minutia of my daily life. I know intellectually these naysayers are wrong — and I’m even beginning to believe this in my heart — but I nonetheless feel defective in the eyes of society.

Being sick is really hard work. Those who have never had an extended illness have no idea how difficult it is. And, sadly, many of them are unwilling or unable to step outside their experience to consider what we go through. Still, those are the voices that haunt me as I work my butt of to manage chronic migraine. I want to be well and I want to be a productive member of society. It’s infuriating to know that others refuse to see this and instead pass judgement, assuming their way is the only right way, and that I must be doing something wrong if I’m not getting better.

I’m not one to care much what other people think… unless I fear there is truth to what they believe. Rationally I know they are wrong, but I can’t seem to shake my own doubt. I’m not defective or lazy and I want others to stop thinking that I am. Because if they don’t believe it, maybe I won’t either.

Chronic Migraine, Coping, Friends & Family

Migraine as Solitary Confinement, Controlling Lover

A non-migraineur who was close to the young woman who took her life a couple weeks ago, but didn’t know how much she was suffering, emailed me after reading my post and expressed regret that they hadn’t been able to help her. I tried to describe the isolation of chronic migraine, but capturing the experience was nearly impossible. I likened it to solitary confinement. I also explained that no matter how much the chronic migraineur may want to reach out or how hard someone tries to reach in, there’s an invisible, impenetrable barrier. While this seemed to help the person I was emailing with, it still seems an inadequate description of how much chronic migraine can distance a person from their loved ones.

When my migraine attacks were at their worst, Hart and I knew our relationship was suffering. We both wanted to improve our marriage, but I couldn’t work on it. It wasn’t that I didn’t want to, but that I simply could not. The very basics of keeping myself going took all my attention and energy. No matter how much I love my husband and wanted to nurture our relationship, I had to focus on myself.

At that time, Hart compared the role of migraine in our relationship to a difficult, demanding child. I think of it more as a controlling lover. We could have worked together on parenting a child, no matter how unruly the child or how much we disagreed. Though he could help with day-to-day life and getting me to appointments, migraine was still my “thing” and drove a wedge between us that I couldn’t see past. Migraine dictated what I did at every minute of every day. It was all that I thought about.

Solitary confinement and an affair with a controlling lover are the best ways I’ve come up with to illustrate the isolation of chronic migraine, but I know there have to be a million other ways to describe it. What’s your analogy?

Update: Just stumbled upon a post from 2007 where I asked about headache metaphors. Read the informative responses in the comments.