Coping

Migraine Down, Motivation Way Up

I often worry that even if my migraines were under control, I still
wouldn’t accomplish anything. That the problem isn’t my illness, but
that I’ve become lazy. The last three days have shown me just how much more motivated I am when I don’t have a migraine and my headache is mild.

I’ve taken care of many tasks that hang over me but I usually don’t have the energy for. Even now, with the house picked up and all my phone calls made, I’m looking for more to do.

The voice in my head is saying, “You need to rest. You feel great now, but will crash — hard — if you keep pushing.” I’m proud of that voice. It took so long for it have a permanent spot in my head that I truly appreciate the reminder. I’d listen to it if I didn’t know that a migraine could make my head explode and steal my energy and mind at any moment.

What a relief to know that migraine and chronic daily headache haven’t permanently snatched a integral part of my personality. Maybe they’ve made me appreciate it even more and have (almost) taught me to back off before I overdo it. I’m not ready to give it the Pollyanna treatment, but maybe, just maybe, there are some hidden blessings in this illness.

I’m going to try to listen to the wise voice in my head now. I need to eat a sweet and then will snuggle up with Harry Potter. I encourage you to relax and enjoy your weekend too. Taking care of yourself can be magical.

Coping

Personality or Illness?

Laurie at A Chronic Dose wonders if she’s type A by nature or by illness. “Too much energy wasted on wishing things were perfect and making sure everything unfolds just so?”, she asks.

Laurie’s questioning is similar to the questions I’ve been asking myself in the last week. Do my insecurities in social situations stem from pain preventing me from being fully engaged in conversations? Is my (generally) more laid-back approach to life because I can’t be the high-energy, high-stress person I used to be, or have I simply grown up?

These questions also lead to reflections on the path I might have taken without my headaches. Would I have found a career that was as fulfilling as blogging? Would I be so eager to do things that we dream of now instead of after retirement, like traveling? Since I can’t do it differently, I’m glad that I feel like I’m heading the right way. Still, I have to wonder.

Even Hart’s life would be different without his episodic migraines, albeit in minor ways. He’d drink more coffee and enjoy the occasional glass of red wine. He wouldn’t have the fear of being struck down out of the blue.

Do you wonder what your life would have been like without your headaches?

Friends & Family

Nice to Meet You, I Have Chronic Headaches

Our new neighbors are coming over for brunch in the morning and I’ve been dreading answering the “What do you do?” question. I am now comfortable saying that I’m a writer (it took me a long time to believe this myself); it’s the follow-up questions I don’t want to answer. This is how the conversation goes:

Nice person: What do you write about?
Me: Health issues.

NP: Like what?
Me: Pain and headache disorders.

NP: How did you get interested in that?
Me: I have migraine and want to help others who have it.

NP: That’s too bad. How often do you get them?
Me: They are chronic.

I love blogging and am proud of what I do, but feel like a complainer when I tell someone I barely know about my headaches. It can start a relationship off in a funny way. I’ve said that I don’t have energy to be friends with people who can’t understand what my life is like, but I want to be friendly with the next door neighbors.

It’s so odd that this is a topic that I’m more than willing to talk about, but I don’t want people to identify me as my headaches. Honestly, I worry about becoming my headaches and thinking that others see me that way encourages my harsh self-criticism. Sometimes I feel like I’m over it, but I know that I’m not.

Is this my own strain of neurosis or are you plagued by these thoughts too?

Coping, Society

Blaming the Patient

Commenting on Food Triggers & Unrealistic Expectations, Kate responded to a part of Heal Your Headache that I skipped over. A part that makes my blood boil and fills me with shame for having put the book in my recommended list.

“Diets aside, I have a HUGE problem with Buchholz’s book. It’s Chapter Nine: ‘When Treatment Fails.’ In this chapter he speaks of ‘hidden agendas’ for treatment failure, such as ‘…when we reap the rewards from being in the sick role. When we’re sick, others give us their attention, concern, affection, sympathy, help, forgiveness, and permission to be excused from work and other responsibilities. As a neurologist friend of mine has noted, we all like having our pillows fluffed.’

“He states that ‘we all struggle with our identities,’ and suggests that the title of ‘headache patient’ gives us at least ‘SOME identity’ and ‘distinguishes’ us. Can you even imagine this??

“He goes on to put forth reasons that headaches are ‘hard to let go of,’ producing patients who ‘don’t try hard enough.’

“This is an outrage. And he is being touted as a ‘headache expert,’ was given an hour on Larry King Live, and patients everywhere are being given his book to read. And I wonder how many DOCTORS without enough headache training are using his book as a guide??

“Even worse, in the same chapter is a section entitled ‘The Trap of Disability Status.’ He states that no doctor should support long-term disability claims based on headache complaints. ‘The patient who walks out of a doctor’s office with a signed disability form is grateful and content, in contrast to the one who departs angrily with an unsigned form.’

“He states that he understands that we are suffering, but that we are suffering because we have never had PROPER treatment, such as his ‘1-2-3 Plan’ (which I can’t say has much in it that I haven’t heard before). He writes: ‘Disability is a trap: it guarantees that you’ll be complaining of headache until you choose to set yourself free.’ SET MYSELF FREE???

“Kerrie, is anyone else insulted by this?? When I walked out of my doctor’s office knowing I had to apply for disability, I was crying, not ‘content’ by any stretch. Having to stop working was horrifying, and produced NO rewards and certainly no improvement in my ‘sense of identity.’ Oh — and how about the big windfall of cash-flow that we pillow-fluffers on disability get to live on?? My-oh-my, sometimes I just don’t know what to do with ALL OF THIS MONEY!!! Guess I’ll just have to go out and buy some more fluffy pillows and bon-bons.

“Sounds like blaming the patient to ME, which is precisely what he chastised the medical establishment for doing at the opening of his book.

“I just don’t get why this book is getting so much acclaim. I don’t care HOW fabulous his dietary and rebound ideas are for some people; this is profoundly insulting, degrading, pompous, disrespectful, and bizarrely ignorant. I fear most for new patients who may read his book and, once again, look poorly on THEMSELVES when the Great Doctor’s big Plan doesn’t cure them.”

Coping, Favorites, Friends & Family

Too Much Information

Being a young married woman without children and no job makes party conversation pretty difficult. Add being a feminist and living in a new city to the mix and watch it bubble over. In the two years since I quit my job and my husband and I moved, I’ve had many different approaches to small talk.

At first I said that I was getting us settled into our new house and community, then was figuring out what career I wanted to do next. This held up for about six months, at which point I could say that I was waiting to get residency so I could take classes without paying out-of-state tuition. Then I could say that we had some travel planned, so I needed to wait until after that to enroll in classes.

In every conversation, I felt like I came across as a spoiled housewife who decorates her house, drinks lattes and travels on a whim. Not only that, I wasn’t doing very much of anything. While lying in bed, I read a lot of books and despaired over how disorganized the house was. I had nothing interesting and socially appropriate to talk about, and it seemed like everything I did say was about my husband, not me. Appearing as the current incarnation of a 50s housewife didn’t thrill me.

Trying to hide or deny major parts of my life was taxing and felt dishonest, so I went to the opposite extreme. All the pain, boredom and unhappiness was simply too much to keep to myself. Whenever a conversation steered toward me and my work, I found myself telling the gory details to strangers. One of these strangers was kind enough to see that there was good underneath all the desperation and self-centeredness. She has become a good friend, but everyone else was part of a transient relationship. I imagine I scared them all off.

I’ve gotten much better at tailoring the response. I try to dodge the question when I first meet someone. If I can’t, I’ll say I do some freelance writing. If I sense a connection with or lack of judgment from someone, I’ll say that I’m a reluctant housewife. This is always questioned, so I say that I haven’t been working because of health problems, but that I’m getting started on some health education/advocacy/activism work. If someone asks a direct question about the scar and lump on my chest, I’ll give an edited version of the story.

As I write this, it’s obvious that my responses have followed my changing self perception. When we first moved, I still thought I’d be cured soon and would be able to hold any sort of job I wanted to. After it became apparent that this wasn’t the case, I stammered out some excuse or gushed the details. My life was too much for me to sort out on my own then. The excuses lasted a lot longer than the gushing did. They got me through the greater part of a year until I figured out who I was and how to mesh my illness with the rest of life.

Pain dictates so much of what we do, how we think about ourselves and how we relate to others, that it seems like it dictates our lives. Letting the pain be in control for a while may ultimately help us live with it more easily. Some day you may look back on your behavior and cringe. I certainly do, but I don’t regret it.