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“I’m Trying So Hard”

It is past noon. I’m finally out of bed and have showered and dressed. I want to write. I want to get the house ready for my mom’s visit next week. I want to bake Christmas cookies to decorate with friends this weekend. Yet here I am, slumped over at the dining table with my head pounding. I didn’t even mean to stop at the dining table. I was on my way from the kitchen to the living room, but my body is so tired and it hurts so much to move. I saw the chair and had to rest for a minute.

Feeling defeated, I mentally wailed, “I’M TRYING SO HARD!” Then a funny thing happened: I relaxed. Beginning with my shoulders, my muscles released. I felt calm and, of all things, satisfied. I am doing my best and I’m able to recognize it. I’m not berating myself for being lazy or wondering if I’m exaggerating my illness. I have a migraine. I am sick. And it is not my fault. IT IS NOT MY FAULT!

I don’t think I’ve ever used all caps on the blog before. It feels good. I’M WORKING MY BUTT OFF TO LIVE A GOOD LIFE DESPITE HAVING A CHRONIC, DEBILITATING ILLNESS AND I’M KICKING ASS!

(crawling to the couch now)

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Classic Post: Assessing How Much Your Headaches or Migraines Affect Your Quality of Life

See a doctor for headaches and you’ll likely be asked to take the MIDAS or HIT tests to assess how your migraines or headaches affect your quality of life. You may find your results even more helpful than your doctor does.

Assessing Your Quality of Life
The Daily Headache
May 6, 2006

Whether you have them every day or every three months, headaches definitely affect your quality of life. MIDAS and HIT are two questionnaires to assess the extent of the impact.

Before I recognized how seriously I was affected, a doctor gave me the MIDAS test. The highest score on the test, which indicates severe disability, is 21+. My score was above 100. Needless to say, the results floored me.

This was what it took to see just how bad my headaches were. In the ensuing months, and years, I would recite MIDAS every time I questioned the realness of my illness. Every time I blamed myself, I repeated my mantra. This made a huge difference in how I perceived and dealt with my headaches.

If you question how real your headaches are, these tests are invaluable. They can also help you assess your pain from one time period to the next.

In addition, you can show the results to people who are close to you, but don’t really accept what you’re going through. As they remember the last one to three months, the pieces may slowly fall into place.

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Preventive Drugs Improve Quality of Life for People With Migraine

Preventive medications can significantly improve the quality of life for people with migraine, but their quality of life is still below that of people without migraine. The study tested quality of life for patients taking nadolol (Corgard) and topiramate (Topamax). The article, Impact of Preventive Therapy with Nadolol and Topiramate on the Quality of Life of Migraine Patients, appears in the August issue of Cephalalgia.

[R]esearchers studied 76 consecutive migraine patients at least 16 years of age, evaluating them at the beginning of the study and again after 16 weeks of treatment with nadolol at 40 milligrams per day or topiramate at 100 milligrams per day. The study was completed by 61 of the patients.

The results of the Hospital Anxiety and Depression Scale revealed a mild anxiety state and a moderate depressive state at the beginning of the study, which both remained unchanged after therapy.

The migraine-related quality of life questionnaire score indicated statistically significant improvements with treatment.

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Guilty As Charged

Hart and I both have colds. He’s sitting on an airplane, going to a trade show, which will be busy, loud and exhausting. I’m sitting on the couch, watching baseball playoff games while perusing cookbooks, crocheting and reading.

I am completely overwhelmed by cooking and cleaning. I can let cleaning slide, but cooking is a necessity. Yet shopping, prepping and cleaning after dinner is just too much for me. (And I haven’t liked either meal service that I’ve tried.) For Hart, leaving work at 6 p.m. calls for celebration.

I’m trying to establish a “workday” routine that allows for all I need and want to do each day without wearing me out. This list is for when Hart is at work, which leaves evenings for spending time together and hobbies (or for me to overtaken by pain):

  • Blogging and returning blog-related e-mail messages — 2 hours
  • Cleaning, running errands, paying bills, grocery shopping and cooking — 2 hours average
  • Exercise, yoga two days a week and walking the other three — 1.5 hours average
  • Amazon sales and eBay (we’re selling a bunch of stuff and books) — 1 hour
  • Writing, either nonfiction health pieces or to try my hand at fiction (which will require lots of studying and practice) — 2 hours minimum

That’s eight and a half hours, which is nothing compared to Hart’s days. But for the sake of my health, I don’t want to exceed six a day.

Can you tell I don’t feel like contributing to our household? After three years, I am (mostly) OK with not earning money. Now I’m focused on making our number of hours of work comparable.

This isn’t about feelings of guilt or inadequacy, but because Hart comes home from most days completely spent. He hits the ground running each day, goes non-stop when he’s at the office, answers e-mail before he goes to bed each night and rarely stops thinking about work.

Hart’s talked about taking a couple years off to go to grad school. He’s also always wanted to start his own business. I want nothing more than to for him to be happy, but… there’s that pesky mortgage and necessary health insurance.

How is it fair that I get to take count practicing yoga as part of my work? Or take time off for lunch and a pedicure? Or read when I get tired?

I’m forever questioning the severity of my pain and [insert other migraine symptom(s) here]. I should be able to get more done in a day than I do, shouldn’t I? Am I just hiding behind the statistics on the impact of headache on quality of life?

Where’s the balance? Is it even possible to achieve one?

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Assessing Your Quality of Life

Whether you have them every day or every three months, headaches definitely affect your quality of life. MIDAS and HIT are two questionnaires to assess the extent of the impact.

Before I recognized how seriously I was affected, a doctor gave me the MIDAS test. The highest score on the test, which indicates severe disability, is 21+. My score was above 100. Needless to say, the results floored me.

This was what it took to see just how bad my headaches were. In the ensuing months, and years, I would recite MIDAS every time I questioned the realness of my illness. Every time I blamed myself, I repeated my mantra. This made a huge difference in how I perceived and dealt with my headaches.

If you question how real your headaches are, these tests are invaluable. They can also help you assess your pain from one time period to the next.

In addition, you can show the results to people who are close to you, but don’t really accept what you’re going through. As they remember the last one to three months, the pieces may slowly fall into place.