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 I’m still withdrawn, still focusing so much on how I feel and taking care of myself that I’m not as engaged with my loved ones as I want to be.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

Making Room for Restorative Activities

Baking. Attending yoga classes. Dancing to live music. Traveling with Hart. These disparate activities have a vital common thread: they restore me. How bad the migraines are, money, time, concert schedules, and even which migraine diet I’m on influence how often I do each thing, but at least one of these activities has to be a constant in my life for me to remain emotionally stable. They’re so crucial that I prioritize them unwittingly. Until this summer.

After I went off antidepressants, I was feeling off-kilter. I kept trying to pinpoint why. Was it because I’d stopped the drugs? Was it the weather? Was I homesick? Missing Hart? Bored? Lonely? Grieving my migraine losses? I finally figured it out this past week when, after returning home from Seattle, I went back to yoga for the first time since April and felt a deep calm that’s been elusive: I’ve barely engaged in any of my restorative activities in months.

How I Got Off-Kilter
In April, my yoga studio moved to a newly remodeled building. Even though they used eco-friendly materials to create the beautiful new space, the outgassing was too overwhelming for this sensitive migraineur. I looked for other studios, but couldn’t find another within a 30-minute drive that had frequent gentle classes.

Part of the reason I love to bake is that I love to eat baked goods. There are no “safe” baked goods on my current diet, so I haven’t been baking much. I still bake for others occasionally, but instead of being a relaxing endeavor, it feels fraught with danger.

Funk, world music, and jam bands are pretty rare occurrences in the Phoenix area. Having a band in town on a night I feel up to dancing and playing early enough it won’t wreck my migraine-dictated sleep schedule is even rarer. Hart and I have traveled to shows and festivals in the past, but that’s on hold while we’re launching TheraSpecs.

In fact, all travel is on hold while we’re living on an entrepreneur’s shoestring budget and dedicating all our time to TheraSpecs. Hart did spend a great week with me in Seattle, which was our first vacation in a couple years. Yay for frequent flier miles and friends who let us stay at their houses!

Prioritizing Rejuvenation
When I was desperately ill, I managed to work at least one of my necessary activities into my life. Now that I’m feeling better and more functional in years, I let them slide. This seemed ironic at first, though it makes sense upon further reflection — I’m no longer constantly craving rejuvenation. But, whether I’m aware of it or not, I still desperately need it. In fact, it may be even more important now that I no longer focus all my energy and attention on taking care of myself.

Unless tickets for this weekend’s Phish shows in Colorado fall out of the sky, yoga will be my revitalizer for the foreseeable future. I’m hoping to rejuvenate and get back into shape. Thankfully, the yoga studio has aired out enough to no longer be a migraine trigger.

What About You?
What activities restore you? Does your headache disorder interfere with them? Do you have to make time for them or do you do so without even realizing it?

By

Yes, Body, I’m Listening

“C’mon, you don’t feel that bad,” I told myself upon realizing I was slumped over the coffee table with my head resting on my arm. My next thought was “Oh, wait. Maybe I do.” What an exciting moment to realize I was listening to my body.

A couple years ago I conceded that if I find myself sitting on the kitchen floor, I probably feel too bad to be cooking or cleaning. Or if I’m resting on the couch and discover I’m in the fetal position, the migraine is probably pretty bad. Instead of shrugging off my body’s cues as melodramatic, I finally see that unconsciously engaging in pain-soothing behaviors is a good indication I’m in bad shape.

I have long done so much on a good day, trying to take advantage of it, that I push myself into days of sheer exhaustion and severe migraines. That hasn’t been happening so much in the last year. Perhaps this is a sign that I’m paying attention when my body tells me to stop.

How does your body tell you it’s time to rest?

By

Trying to Find My New “Home”

Home is where I want to be when I have a migraine. Being nearly housebound since I moved to Boston in August, you’d think I’d be all set. Except that “home” is far more metaphorical than literal. In Seattle, my home was on the couch in front of the fire. Even if my apartment here had a fireplace, it wouldn’t be the same. Home is an emotional place, an emotional state. One that is found by feeling it. One I haven’t found since moving to Boston, not in my apartment or in the city.

Driving from the airport into Seattle the first time Hart and I visited, I knew I’d found my home. In fact, when I was 13 and first visited the Pacific Northwest, it felt like home even though I wasn’t aware of what that meant. Now I’m 3,000 miles away and I feel the distance acutely. I know Boston is a great city and there’s a ton to see and do in the Northeast. Enough friends of friends are here that I’m confident we can build a great social circle. The move isn’t intended to be permanent. All this logic doesn’t erase the ache for Seattle and the forests of the northwest.

Hart and I went back at Thanksgiving. The first morning, we went mushroom hunting. My heart sang as we drove through the city, seeing the water and evergreens. The ferns, the moss and the drizzle in the forest felt so good that I turned my face to the sky to soak it in. Then a severe migraine hit on the drive back to our friends’ place. The subsequent migraines were so bad that, except for a massage appointment, I didn’t leave their house until we went to the airport, 10 days after our intended departure. I have to wonder if not wanting to leave my beloved city was the primary migraine trigger.

Over the last month, the migraines have improved steadily. I even went to Hart’s work’s holiday party Tuesday night and had a great, low-pain time. I also met a lot of new people, all of whom were curious about Seattle. Talking about my city was soothing yet heartrending. The next day, I stumbled upon The Place I Love: Songs About Longing, written by someone from Portland who recently moved to New York. Listening to the songs she shared was another bittersweet comfort.

Seattle from Kerry ParkSeattle’s lakes and trees and cranes and Space Needle fill my soul. Even when I didn’t leave the house, the glimpses out the windows cheered me. I didn’t realize how much the city carried me as I struggled with an ever-worsening chronic illness. Moving to Boston was the right choice for Hart and me and I want to make it home while we’re here. But how do I find my place in a city that doesn’t nurture me?

By

The Trade Off: A Scheduled Migraine Day

I drove more than three hours to my sister’s house yesterday so I could surprise my nephew on his 10th birthday. I had to be home for plumbers this morning, so I could only stay for a few hours. Cramming nearly seven hours of driving, lots of caffeine and bad-for-me food into 13 hours ensured I’d be sick today. I went anyway.

After years of constantly overdoing it and constantly being sick, I learned I become terribly ill when I push myself too much. Now I know to hold back; sometimes I think too well. I’m stuck at home with migraines so often. There’s only so much time I can give up because one might come along.

Last year, a friend taught me that I don’t have to shirk anything that might make me sick — even if it is something that I’m absolutely positive will result in at least a day in bed. She showed me I can choose certain times to push myself without doing it every single day. The trick is knowing one day of indulgence can lead to one (or more) days of feeling awful.

When planning yesterday’s trip, I factored in today as a sick day. Other than letting the plumbers in, I made no appointments or plans. I stocked up on easy food and checked out a good audiobook. By intentionally making a trade off, I feel no guilt.

I know I should never feel guilty for being sick, but I rarely do what I should. Today I can see what a reprieve it is to just let myself be as I need to be.

Related posts: