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

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.

By

Travel Lodgings with Fewer Odors and Chemicals

If odors or chemicals trigger your headaches, traveling can be miserable. The moment of opening the hotel door and having a scented room spray rush out fills me with dread because I know that I may spend much of the trip in that very hotel room with my head pounding.

Nancy Westrom, who has multiple chemical sensitivity, has created a guide to vacation lodgings with reduced toxicity (and often odor). A few of the options are listed online and you can buy a printed directory for $17. The directory, which was updated this year, lists 285 different “safe” US vacation lodgings and 30 international locations. It also includes 51 campgrounds, most of which are in the US.

If you need to stay somewhere not on the list, she recommends reserving lodging as far in advance as possible and e-mailing to ask for your needs to be met, following up to make sure this has been done and leaving a generous tip for housekeepers. For herself, she asks for rooms far away from renovations and with lots of windows. I’d also make sure the windows open to rid the room of residual perfumes.

The Safer Travel Directory is a brilliant idea with lots of information to make travel a little easier for us. Now we need to come up with a guide on dealing with the environmetal triggers of headache found in cars, planes, trains and buses. Any ideas?

(For more information online about lodging for odor- and chemical-sensitive travels, Google green hotels.)