By

Having Nothing Left to Give

When writer Anne Lamott’s brother said his wife was near death, she desperately wanted to go visit and be there for her family, but was momentarily physically and emotionally disheveled from her own life stuff. She called a friend who said, “Dearest, you do not have what John and Connie need. You don’t have it to give, because you are kind of crazy, and depleted. What if you got centered, and sane and full, through rest, and friends and hikes? Then you will know what to do, and when.”

“You do not have it to give.” I spent years trying to give to others what I didn’t have to give. I wanted to, very much, so I kept trying, despite being completely depleted by chronic migraine. I was never satisfied with what I gave. I wasn’t present enough, wasn’t caring enough, couldn’t follow-through when I wanted to. I was physically incapable of providing the support I wanted to give. But instead of recognizing my limitations, I kept on pretending I was OK. I wasn’t satisfied, nor were my loved ones. They knew I wasn’t really there, they knew I probably wouldn’t keep my promises. I hated this.

When I finally got that I couldn’t give away what I didn’t have, I withdrew. I knew that I had to get “centered and sane and full” before I could really be there for others. Sounds wise, except that I was so sick and wrecked that I withdrew for years. I’m still withdrawn, still focusing so much on how I feel and taking care of myself that I’m not as engaged with my loved ones as I want to be. I hate this, too.

But it’s what I have to do. I am better – so much better than I was – but I continue to have migraine attacks more days than not. I can now stop some migraine attacks with medication, but I still lose at least few hours each time one comes. And sometimes two or three come in a day.

I am over the moon over how much better I am because the relative improvement in my life is so large, but I’m still quite sick. My version of feeling good has far more pain, fatigue and brain fog than a healthy person’s definition. I’ve adapted to that and am (mostly) OK with it, but it causes a lot of hurt and confusion for my loved ones. If I’m doing so well, why am I not calling on a regular basis? It’s because doing “well” takes an unbelievable amount of physical, mental and emotional energy. That’s so hard to wrap my own mind around that I can hardly expect people who don’t live with me to do so.

Even on great days, my pain reaches a level the comparative pain scale describes as “very noticeable pain, like an accidental cut, a blow to the nose causing a bloody nose, or a doctor giving you a shot.” That’s just pain, it doesn’t account for all the other symptoms of migraine, the most prominent of which are, for me, fatigue, brain fog and nausea. I have to consult with migraine before I do anything. I have to attend to all the same things of life that everyone deals with on a highly compressed and unpredictable time schedule. I can go from feeling great to laid up in less than 15 minutes. Despite planning nearly every day to call someone after I get the absolute necessities of life taken care of, I’m rarely able to make the call. By the time I get there, I have nothing left to give.

Getting rested and centered and full before giving to others may make a person most available to their loved ones, but what if you never get there? Where’s the balance between taking care of yourself and being there for the people who are important to you? I’ve gone from one extreme of the continuum to the other and am now trying to move myself more toward the center. I can’t figure out how to do it in a way that doesn’t compromise my own well-being.

By

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.

By

Chronic Migraine’s Isolation and Emotional Torment

When the worst migraine I’ve had in months coincided with an overnight visit from a friend, I was overwhelmed by how incredibly alone I felt, even when surrounded by friends. In The Isolation of Chronic Migraine, a post I wrote about that night for Migraine.com, I said:

The isolation gave me a sense of physical emptiness. It was as if I wasn’t even there — like my essence (or soul, if you please) was missing. Like I was in this experience of migraine entirely alone and not even the people closest to me could touch me physically or emotionally. (Read the whole post here.)

My friend visited last Thursday. Although I haven’t felt isolated like I did that night again since then, the memory of when my migraine attacks were at their worst has continued to haunt me. In those days, I felt disconnected all the time. Like the constant companion of severe chronic migraine wrapped me in a layer of insulation that kept anyone else from reaching me. No one, not my friends, family, or even my husband, could get through it.

Much of this time was when I lived in Seattle. In my bedroom there, the closet took up one long wall, but the doors were a regular closet door width. This left a nook that was difficult to access. I used to lie in bed and fantasize about curling up in that tight space, where I could be comforted by the darkness and the enclosure. I don’t think I ever did it — it seemed a desperate move, like doing so would mean I was millimeters away a psych ward — but I do remember sitting on the floor in the tiny spot between the bedside table and the wall. Even there, migraine wouldn’t leave me, and the sense that I was disappearing from the world was magnified by the knowledge that I took up so little physical space.

Thankfully, those days are behind me. I say this not only because I’m on some preventives that reduce the severity of the migraine attacks, but because I don’t think I will be able to disconnect like that again. Since those days, I’ve allowed my friends to be around me when I’m in a bad migraine attack. I’ve let other people see what it can be like and have spoken about it more openly. I used to close off as soon as someone asked me about migraine, as if acknowledging it would make it more real. Now I answer questions readily and have described the experience to non-migraineurs. I have written about those times and how close I was to suicide.

Then again, it is easy to say I won’t get to that point again on a day I’m feeling better. Last Thursday night was scary both for the emotions I felt and how reminiscent they were of worse days. I am far more connected than I was a few years ago, but, truthfully, I’m still detached. I haven’t returned to calling friends and family for no reason and am nowhere close to being as social as I once was. I’m not in massive pain all the time, but I still have a migraine nearly every day. I’m physically and mentally exhausted much of the time. My emotional and physical strength are stretched taut in  support of myself; my ability to care for others comes in small, unpredictable bursts.

Even the most sympathetic, empathic friends and family cannot understand what it is like to live inside chronic migraine. Despite all the explaining and writing I have done, I still cannot capture the bleakness and alienation I have felt. The physical sensations of chronic migraine are horrendous, but the emotional torment may be even worse.

By

Leaning on Your Support System

“People cry, not because they’re weak. It’s because they’ve been strong too long.” The National Headache Foundation posted that on Facebook last week, right when I was wondering how much more I could possibly endure. I’d had five weeks of nearly perpetual migraine and I was well beyond the end of my wits.

Sunday night I had an epic crying session. I wanted out of this body, this cage. I was tired of having to fight to do the smallest tasks, like eating or showering. I didn’t want be sick anymore. I howled and shook with frustration and fear for hours. My sweet husband held me and told me that even if I was too exhausted to fight, he was not. He told me not to underestimate my own strength. He told me that even if my life is harder than it has any right to be, it is a life worth living. With his kind words and solid grasp, Hart reignited my courage and determination.

My illness has changed Hart’s life nearly as much as it has altered mine. He married an equal, yet now finds himself supporting us financially, running our household and taking care of me. Instead of spending evenings at concerts, movies or with friends, he makes popcorn and we watch Netflix. I try to minimize the impact of my illness on him. I’m honest with him about how I feel, but when I’m in ruts like I was last week, I tend to stop talking about it. Since I isolate myself from everyone else when the migraines are bad, Hart’s my lifeline.

Sunday’s emotional implosion was not only because I’d been strong too long; it was because I did not allow anyone else to ease the burden. I don’t know how I will overcome the desire to isolate myself when I am sick, but I can’t keep trying to manage this life on my own. Though strong-willed is one of my defining characteristics, no one can carry the weight of chronic, debilitating illness alone.

By

Asking for Help & Beginning to Heal

Since stubbornness is one of my most prominent traits, I long thought sheer tenacity could snuff out the migraines. If not through willing them away (a useless endeavor), then by relentless pursuit of treatment. Instead, I have spent the last two years feeling like the migraines and accompanying depression had conquered me. Being obstinate wasn’t enough. Only by asking for help has my despair transformed to hope.

“I can do it myself” is probably my most oft-uttered sentence. When it comes to my health, I can’t. Sequestering myself only made it worse. The isolation wasn’t intentional. It started a decade ago with me thinking that talking about my ailment would automatically make me a complainer. It ended in November with me reaching out to my friends, screaming and crying and holding their hands as I fought through the worst migraines I’ve ever had.

Letting people know (and see) how bad the migraines truly are and the havoc they wreak on my entire nervous system lightened my heart. The severity of my depression since Hart and I moved to Boston is more than I wish to revisit. It is far from gone, but I can now see a way out.

People often tell me I’m brave for dealing with illness as well as I do. Asking for help took more courage than anything else I’ve faced. I was convinced I had let everyone in my life down. That canceled plans and unreturned phone calls (and emails and text messages…) made them love me less. Completely untrue.

If you are in a similar place of hopelessness, please, please reach out to the people you love. They love you whether or not you are sick. The rewards of asking for help make the necessary vulnerability worth it.