Category: Favorites

Coping, Favorites, Mental Health

The Guilt of Letting Myself Down Over and Over

Kerrie Smyres

Guilt and I spend a lot of time together. It is my closest friend, a friend I happen to despise. This is one bad relationship I don’t think will ever end. I feel guilty when I let anyone down, especially when that person is me. Multiple times a day I make promises to myself and multiple times a day I break those promises.

Lists are essentially promises to oneself. You plan to do each item on the list: make a phone call, clean the kitchen, have dinner with friends, pick up the house, etc. Organized folks will assign realistic dates to tasks. I give deadlines too; usually leaving 48 hours to accomplish all 12 items. Then berate myself for not taking care of them.

I’ve always had high expectations for myself. Even after all these years of migraine and chronic daily headache impeding my success, I think I can do more than I’m physically capable of. I believe I should be able to do everything I want or need to do, even without realistic parameters. Thus starts the cycle of self-blame and guilt.

Letting myself down — and feeling horrible about it — day after day haunts me. Being self-critical is my way of life. I don’t think being hard on myself is the only problem here, but don’t know what else is at work.

Triage is more important than source-sleuthing for now. Not calling myself a flake is probably a good start! After that I’m stuck. I can’t stop setting goals; that would be giving up on my life and giving in to migraine and chronic daily headache. Where is the line between labeling something as unrealistic or as a goal to strive for?

Prioritizing is the most obvious solution. Even that is confusing. How to prioritize when I might not get to the priorities? How do I choose what I really need to do? When do I choose what I want to do over what I need to do?

Learning to let go when I can’t follow through with myself seems helpful — and impossible. Cognitive behavioral therapy, perhaps the ideal solution, isn’t going to make it into my schedule anytime soon. Any suggestions?

photo credit: Raul_d50

Books & Products, Coping, Favorites, Mental Health, Resources

Making Peace With Pain: Accepting Migraine and Chronic Daily Headache in My Life

Kerrie Smyres

Accepting that I may have a migraine or headache every day for the rest of my life is the most effective treatment I’ve had. But how did I get here and what does acceptance mean, exactly? Time. I know, not an encouraging answer, but where I am now is worth all the time it took to get here.

After my occipital nerve stimulator proved ineffective in January 2004, I was devastated. What I thought was my last chance at treatment had failed. Feeling like you have nothing left can suck you into a dark hole. It can also be the motivation necessary to claw back to an enjoyable life even if chronic daily headache and migraine are going to stick around. Most likely, it will be both.

For more than a year, I wrapped myself in the sadness and hopelessness that enveloped me. Mourning losses from my illness was necessary, but I wanted my life back. Even one full of pain and exhaustion was preferable to where I’d sunk. I was finally motivated to find a happier way to be.

Reading The Anatomy of Hope by Dr. Jerome Groopman played a crucial role. He writes: “Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.”

Until then hope was believing I’d find a miracle treatment. Groopman taught me that hope is knowing a happy life is possible even with illness. Finding the joy in everyday life is far better than clinging to desperate desire for a magic cure.

Instant change didn’t follow my aha! moment, but put the process in gear. Now I have days where the thought “I love my life” jumps unbidden in my mind. That never would have happened four years ago. I still have plenty of days that are horrible, but hope lurks even on days I don’t think I can handle it anymore. When I feel OK, I really do try to seize the moment, as the cliche goes. Corny yet true.

The following books have helped me along:

  • The Anatomy of Hope by Jerome Groopman – The first time I read this, it was just an interesting collection of essays; the second time I “got it” and took the messages to heart. That was when I was first beginning to accept headaches as a permanent part of my life.
  • All in My Head by Paula Kamen – A memoir and great information source on chronic daily headache. She recommends Chronic Illness and the Twelve Steps by Martha Cleveland for accepting illness. (Kamen is also a contributor to the New York Times’ migraine blog.)
  • The Chronic Illness Workbook by Patricia Fennell – The same idea as the 12 steps book, but with less of a spiritual focus and is more methodical (for lack of a better word). I prefer this one.
  • Kitchen Table Wisdom by Rachel Naomi Remen – In the self-help/inspiration genre without being over the top pushy or mushy. The thoughts it provokes have been vital to my acceptance of illness. My copy currently has 14 bookmarks in it.
Coping, Favorites, Friends & Family, Mental Health, Society, Triggers

Guilt Comorbid With Headaches

Kerrie Smyres

“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.

Doctors, Favorites, Resources, Treatment

How to Find a Doctor Who Knows About Headache

Kerrie Smyres

Would you trust an editorial about foreign aid policy that was written by the author of bodice-ripper romance novels? How about trusting doctors who calls themselves headache specialists even though they are trained in totally different fields, aren’t certified in headache management, and/or don’t participate in either of the national headache societies?

Some people who appear to be unqualified for a job do have training or experience that you can’t see at first glance. Usually, though, your initial skepticism is proven to be well-founded. The only way to find out is to research the doctor beforehand and devote part of your first visit to interviewing your new doctor. The best credentials in the world mean nothing if the doctor isn’t a good match for you.

To find a headache specialist, start with the American Headache Society or National Headache Foundation. Both have comprehensive lists of specialists who are members of their organizations. Being a member doesn’t guarantee that the doctor is good, but I’d only see someone who was involved in a professional headache organization.

ACHE (part of AHS) has a physician finder on its website. You can call NHF for a list of members in your state (888-643-5552) or check the online database, which includes all headache management certified doctors, whether members or not.

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Favorites, Symptoms

Migraine Hangover (aka Postdrome)

Kerrie Smyres

The migraines that have been visiting the last couple weeks finally gave way to a 40-hour affair that’s tapering off. I’m now in what’s considered migraine hangover (or postdrome). I was reassured when I first learned that this is a normal event at the end of a migraine:

“The postdrome is a constellation of symptoms that persist beyond the resolution of headache. Many of these symptoms appear initially during the prodrome or with the headache phase. Commonly, patients report anorexia [loss of appetite], nausea, muscle tension, fatigue, and cognitive impairment. This phase has been termed the migraine hangover and can last and produce disability up to 1 to 2 days beyond the headache phase. The pathophysiology of the postdrome is unknown, but likely represents a gradual recovery phase from the extreme neurologic disruption that occurs during migraine.” — Clinical and Pathophysiological Anatomy of a Migraine Attack, Medscape

I particularly like the phrase “extreme neurologic disruption.”

The clinical explanation is helpful, but I’ve been trying to describe what it actually feels like to have a migraine hangover. Here’s my attempt to put it into words:

I’m still shrouded by a bad headache. The pounding doesn’t seem to cover as much of my head as it did, but it hasn’t changed location at all. In a sense its like an echo of what it was, but it feels different while feeling the same.

Instead of having trouble thinking, finding words or making decisions, like I do in the rest of a migraine, I’m lightheaded. Not in an unsteady on my feet kind of way, but that my thoughts are so airy and inconsequential they could just float away.

It’s a weak description, but I have no idea how to truly explain how I feel. Can you help me out? How do you feel when you have a migraine hangover?

To read the Medscape article, use one of the user names and passwords from BugMeNot. The World Headache Alliance summarizes a study that found that the “majority of migraineurs experience disabling post-migraine symptoms.”