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Talking About Migraine at Work: Your Thoughts?

migraine-at-workWhat’s your take on this statement?: “The key to managing migraines and work is communication. It’s important to let coworkers and managers know about your condition and educate them about it.”

That comes from Migraine at Work on UCLA Health’s migraine information page. The article’s recommendations for “initiating effective communication” include (paraphrased):

  • Educate your coworkers—because they don’t know what migraine is, they don’t know how disabling an attack can be. The article recommends getting pamphlets from your doctor to share with coworkers.
  • Talk to your manager—to reduce triggers by modifying your work environment and gain access to a dark, quiet room during an attack.
  • Be honest—say that migraine attacks can be disabling and you hate to miss work. Tell coworkers that you miss out on fun activities, too, not just work.

I haven’t worked in an office in 13 years, but these recommendations strike me as idealistic and tone-deaf. Other than the suggestion to be honest that you don’t like to miss work because of a migraine attack, this advice raised more questions for me that it resolved: Is it really a good idea to tell your coworkers and manager that migraine attacks can be massively debilitating? Is a person with migraine responsible for educating coworkers? Will pamphlets be fodder for gossip? Do coworkers even listen to attempts at awareness-raising? Are managers receptive to requests for accommodations? Do coworkers care if your migraine attacks prevent you from enjoying leisure activities?

I’d love to know what you think. Please leave a comment below (or if you get posts by email, reply to the email with your response).

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The Work of Chronic Migraine

The outside world either thinks writing is my job or that I don’t work at all. In truth, I work constantly. When I’m lucky, that work is writing; most of the time, that work is chronic migraine. I never leave work. Never. I never have downtime and I don’t get to leave my work at the office after a long day. My work wakes me up in the night and I check on it first thing in the morning. I imagine it’s not unlike the tireless, thankless work of a stay-at-home mom, without the rewards of giggles and kisses from an adorable little one.

When I was at my sickest, I expended all my physical and mental energy just to keep myself going. It may have looked like I was lying in bed, but I was giving it my all just to ensure I’d wake up the following morning. That may sound melodramatic to some, but any migraineur who can imagine being chronic will understand it’s not.

Now that I’m doing a little better, I work constantly to try to maintain or increase the improvement, monitoring my diet like a hawk, building up my physical strength, avoiding triggers, researching potential comorbidities, considering other treatments, attempting to maintain balance so I don’t push myself into a severe attack, working through the deep well of grief wrought by spending much of my 20s and 30s disabled.

I keep talking about how much better I feel these days. At my current peak, I function at 70% physical or mental capacity (not both) for a couple hours in a day. Most days I’m thrilled with a few hours at 50%. A so-called good day means I don’t have to focus all of my attention on my health and can instead tend to normal things of life, like cooking, doing laundry, paying bills. I’m tremendously grateful to have this much ability, while simultaneously angry that I work so hard for only partial functionality.

I may not have the money, social stature, or outwardly visible accomplishments associated with hard work, but my effort is commensurate with that of a self-made multibillionaire.

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Chronic Migraine Tedium

I’ve been kinda quiet lately. I’m rehashing the same old stuff in my mind and it doesn’t make for very interesting reading: “I’m sick. I don’t like being sick. I feel better than I did at my worst, but that’s still not so good. Still, if I feel better I should be doing more. I need to stop being so self-critical. Why am I still so sick?”

I can’t tell you what’s happening in migraine or headache news and blogs because I’m not keeping up on any of them. I’ve definitely had a touch of depression, though that’s finally lifted. Mostly I just don’t want to think about migraine more than I already do. I’m either having a migraine or trying to cram all the pieces of life into the the time I don’t have one. And by “pieces of life” I mean showering and cooking, not dancing and singing. I have gotten in some time with friends and done a little thrifting in the last few weeks, so it isn’t all about responsibilities.

Sometimes I think of migraine as a full-time job that requires tons of overtime. When I’m not at work, I’m trying to take care of everything that gets pushed aside, never mind that I’m always exhausted because I work so much.

I’m also struggling with my migraine reality. I expected any degree of feeling better to mean huge advances in how much I’m able to do in a day or a week. Turns out that even though I feel better, I’m still quite sick. Figuring this out has been tremendously frustrating, but I think I may be coming to a better understanding of what it means to have chronic migraine that’s only significantly debilitating, not severely debilitating. Oh, the joys of perspective.

This post sounds a little bleak, but I’m actually in good spirits. I think I just needed to get a little bit of the “ick” out. Thanks for listening.

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Migraine, Careers, Weather, Happiness, Love

My husband left the best job he’s ever had so we could move to Phoenix for my health. He telecommuted at first, but it quickly became apparent that it wasn’t going to work. This is old news for me, but I haven’t shared it with you. I thought I was OK with how things were working out. Although Hart no longer has the job that he loved, he is starting his own company (yay, TheraSpecs!), which is something he’s always wanted to do. We’re both stressed about bills and the looming end of COBRA health coverage, but I thought I was taking it in stride.

Then Hart’s boss from his best job ever, in Boston, called to fill him in on the future direction of the company. It is exciting stuff; stuff Hart wanted to be a part of. Jobs and careers aren’t more important than people, of course. However, my husband having a job that doesn’t bore him and doesn’t overwork him, that paid well and had health insurance is worth a lot. I cried when he told me about the phone call. He gave up so much for me and the move to better weather only improved my migraines a bit.

I had felt significantly better on vacations to Phoenix, so we left Boston thinking we’d have a full life here. That we’d be able to go out frequently, have parties, take weekend trips. Instead, the migraines caught up to me after I’d been here two months. It was the weekend after we closed on our (adorable, fantastic) house and my mom dislocated her shoulder and broke a bone in it to boot. Real life came crashing down. My body realized it was no longer on vacation and the migraines were back. Not as bad as they were in Boston, but still regularly disabling.

I am much, much better now than I was my first year back in Phoenix, thanks to magnesium and cyproheptadine (which I’ve been on for seven weeks and still need to tell you about), but I’m still pretty wrung out by the migraines. I feel like my health will continue to improve. I just need to work out some kinks, like dosage and timing, and get myself on a regular schedule. That process is never as easy or as quick as I think it will be, but I still believe the life in Phoenix that Hart and I planned is close to becoming reality.

I’ve spent the last three days wondering if I could get myself well enough to move back to Boston so Hart could work for that company again. (I’m fully aware of how absurd that is — if I had that much control over my health, I’d have healed myself decades ago.) Never mind that the company may not need him anymore and that he’s in the (scary, uncertain, exciting) depths of doing what he’s always wanted. My mind grabbed onto the notion that there was only one solution and gnawed on it for days.

Finally it occurred to me that if I were healthy enough to move to a less stable climate, I’d be healthy enough to get a job for health insurance myself. I’d be healthy enough to be the woman Hart married, the one who’s always ready for an adventure. I know he wouldn’t trade that for any job.

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Guilt Comorbid With Headaches

“Comorbidity refers to the greater than coincidental association of separate conditions in the same individuals. Historically, a number of conditions have been noted to be comorbid with migraine, notably psychiatric disorders (anxiety, depression, panic disorder), epilepsy, asthma, and some congenital heart defects.”

This quote is from an abstract of an article from the June 2005 issue of Current Opinions in Neurology. A comorbidity never included on the list is guilt. OK, so guilt isn’t exactly a illness, but you have to admit there is a “greater than coincidental association” of guilt in people with headache.

We feel guilty because we think we’ve done something to contribute to the pain. Maybe it was getting too worked up over that deadline, eating a trigger food, staying up too late with friends, not drinking enough water, oversleeping. We lie in pain, berating ourselves for whatever we did that caused this headache.

We feel guilty because our partners, parents, kids or friends take care of us when we’re sick. Not only that, they have to pick up the slack of the of chores, errands and responsibilities that we couldn’t take care of.

We feel guilty because we call in sick to work, cancel plans with friends, sleep too much, tell everyone around us to be quiet, have dust bunnies under our beds and in the corners and even in the middle of the dining room table.

We feel guilty because we don’t go to our kids’ soccer games, return phone calls, stop to chat with neighbors, enjoy the sunshine/snow/rain, take the dog for a walk, cook dinner.

While our heads pound, we rage against ourselves for demanding to be the center of attention, not doing our duties, spoiling plans, being unsociable. Our guilt entraps us not just because we let other people down, but because we let ourselves down. Every day. We know we could do more or be better or care for others if we weren’t so weak or lazy or crazy.

We tell ourselves this isn’t true. We may even know it academically. But it’s hard to believe when we’re laid up, cooped up, fed up.

Paul of A ClusterHead’s Life is intimate with guilt these days.