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Posts Tagged ‘acceptance’

Handling Migraine Challenges: Helping Others Understand

July 19th, 2008


I’ve been asking e-course subscribers* what they find to be the biggest challenge in managing their Migraines.  Many of you have responded.  While I’ve written individually to everyone who responded, we all have so much in common that I wanted to share some of what I’ve gathered from your responses.  This is kind of Megan’s Dear Abby for Migraineurs.

We all know that we are challenged in many ways by Migraine disease, but the majority of subscribers included something along the lines of “helping others understand.”  How do we help others, the non-migraineurs who are important in our lives, to understand our disease, how it effects us, what we can and can’t do about it, and how it will effect them?

In reading all your responses, I see two issues in helping people understand.

The first is coping with those who judge us.  “Oh it’s just a headache she’s being a baby.”  “Oh so you have another of your little headaches?”  “Why do you always have a Migraine when I need you to do something?”

People have all kinds of reasons for judging.  Sometimes they want to feel superior.  They may want to distance themselves from you, your problems, your pain.  It’s almost a superstition at times; if they don’t sympathize, if they don’t believe in your pain, they can pretend it has nothing to do with them, that nothing like this can ever happen to them.  Some disability advocates refer to the non-disabled as “TABs” – standing for Temporarily Able-Bodied.  A potent reminder that disease and disability can happen to any one of us.

What can we do with those trying to feel superior?  We can think of nasty responses to put them in their place, and that can be a fun exercise when we’re angry.  The only thing I think is really effective is to speak our truth – tell the truth about what it’s like for us.  Some of those people will hear.  Some of it will sink in.  This is more about Coming Out of the Migraine Closet.  And if these people are not important to us, how much do we really need to do?  We can choose how far, and when, we want to be advocates, and we can recognize that not everyone will understand us, not everyone will be our best friend.  The job of advocacy takes a long time, and while I believe in educating people, it’s okay not to face down every single person every single time.

When important people judge us, the people that matter in our lives, I believe they do it out of pain.  There is the pain of what they lose to Migraine disease.  Our companionship, having fun with us, our help, our ideas, our input.  Our work and productivity.  There is the pain of seeing us in pain.  Of wanting to help. Particularly in the case of parents and life partners, there is the pain of wanting to be able to fix it, make
it all better, make it go away.  The pain of their powerlessness in the face of this disease.  When we can’t face pain, or understand it. we look for someone or something to blame.  “Why can’t you take better care of yourself?”  “It’s all in your head.”  “You have to learn not to stress out.”

The answer is in communication.   If people care about us, it’s worth doing whatever it takes to help them understand.  To sit down, at a time when no one is upset, and tell them what it’s like for us.  Give them information they may not have about this disease.  Teri Robert has a great resource, Understanding Migraine Disease and Migraineurs, which is a letter you can give to those who don’t understand.

But this brings us to the second issue, which I suspect is actually a bigger issue than what the others think.  First, before we can ask them to understand, we have to understand ourselves.  I think this may be the biggest ongoing challenge.  We have to understand, and accept, that we have a disease.  We didn’t choose it.  We didn’t cause it.  We may be scared, confused, upset, frustrated, worn down and in pain.  But we are not lazy, we are not malingering and we are not making it up.

Even more of you wrote about your worries about effecting others than about actual judgment from others.   “Feeling like I’m a burden on my family.”  “This disease affects everybody around me and it’s not fair. Neither for me nor for the others.”  “Having to stay in bed and my hubby having to take over.”  “I want my clients to be able to depend on me but sometimes I cannot be there and that really bothers me.”

We want to be useful, to be helping and participating with those we care about.  The first thing we have to do is to accept that we have a disease that will interrupt our lives, take us out of the action, make us rely on others.  Inside of acceptance, we can begin to see how we can help, what we can do.  Inside of understanding, we have options.

- Megan Oltman

*The Six Keys to Manage your Migraines and Take Back your Life – sign up for this free e-course in the upper right corner of this page.

Writing pen image courtesy of Toshiyuki IMAI; pointing finger image courtesy of Lisamarie Babik.

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Posted in Advocacy, Communicating, Managing | Comments (5)

Knowing what to rage against

January 17th, 2008

“Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.”  Dylan Thomas

What’s important is to know what to rage against. How do I fight the good fight, and not the losing battle? It does me no good to fight the fact of my disease – where my fight is best placed is in finding help for myself and others, learning more, educating more, fighting to live a good life. But I forget that, frequently. I’m sure you never do that – I must be the only one who gets angry at this stupid disease!

Tuesday night I felt the steel band tighten around my temples. The gentle light behind the stained glass shade began to drill unbearably into my eyeballs. Dinner was cooked and eaten, homework done or well underway. My plan for the evening involved chatting with my husband, paying bills, loading theClouds_lake_george dishwasher, some reading. Nothing ambitious or exciting. My plan did not involve a migraine.

I laid my head on Danny’s chest. “Another one?” he asked. I nodded. “Why don’t you go upstairs?” “I will,” I said, “I’ll just try and load the dishwasher.” (Fighting the disease.) “Don’t overdo it,” he said. So I went into the kitchen, and put a plate, a glass, a fork into the dishwasher, bending slightly. The pain gathered over my right eyebrow for its opening move – a faint whack. “Okay, that’s enough!” I said, and laughed a little. (Acceptance.)

So I went upstairs, turned the lights low in the bedroom and settled in. The pounding was slowly starting, so I took my Imitrex. It was 8:30 at night. I could have gone to sleep. I could have read a little and gone to sleep. But I was mad. I was downright disgusted. I wanted to be entertained. I turned on the tv. The flickering screen bothered me, but the pain never got intense enough for me to back down. I stayed up until 11:30, watching a movie I wasn’t even enjoying. I had to keep the sound low to protect my head. I had to mute the commercials and avert my eyes from them. At 11:30 the migraine began to break through the imitrex. I went to sleep.

I woke exhausted at 6 in the morning, on insufficient sleep, to the kitchen fill of dishes. My son was grumpy and didn’t want to get up. I was the world’s most put-upon human being. I plunged my hands into the greasy dishwater, yelled at my son, and cried. My head was tight, threatening another round. But I pulled myself together, made the kids breakfast, got the dishwasher running, the kids out to the bus, checked my work schedule and went back to bed for an hour. I got up and went to work – realizing that it wasn’t the kids or the dishes or even the migraine I was mad at, it was me, my own self, for not taking care of me.

Acceptance is not giving up. Acceptance is going with the flow, with the grain, in the groove. Acceptance is the feet on the ground. Inspiration, striving, creation, possibility is the arms reaching for the sky. Let me have my feet on the ground and my arms up to the sky. God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. Viva la difference!
- Megan

Reaching for Serenity

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Posted in Managing, Musings | Comments (2)

As good as it gets

January 8th, 2008

“What if this is as good as it gets?”  In the movie of that name, Jack Nicholson plays Melvin, an insulting, anti-social author with obsessive compulsive disorder.   Melvin falls for Carol, played by Helen Hunt, the only waitress who will put up with him, at his favorite restaurant.  Carol is the struggling single mother of a boy with crippling allergies.  Not your typical movie romance, Melvin does grow and change through knowing Carol.  But he is far from perfect, even at the end.  My favorite line is when Melvin asks Carol “What if this is as good as it gets?”

What if my sinus infections never get any better than this?  What if I go on having several migraines a month?  What if my house is never any better organized – for the rest of my life?

It’s not a depressing question.  Believe it or not.  This hit me this morning: For 10 years or more, I have been fighting and struggling, obsessing and agonizing, over getting better.  Over things being the way they used to be – when I was 25 and slender, when my sinuses didn’t act up more than once a year and the migraine beast didn’t visit any more often than that, when I had only myself to keep organized rather than a houseful of people and multiple home based businesses.   When Danny and I first fell in love.  When my in-laws were still alive… need I go on?

What if I don’t have to fight, struggle, obsess or agonize?

What if this is as good as it gets?  How bad is this?  I’m not saying give up!  I’m not saying we can’t improve our conditions, or that we shouldn’t go on learning and growing, seeking better treatment, better options.  Of course we must.  We grow or stagnate.  Our characters are like muscles, they must be built up, or they atrophy.  And for most of us, having a chronic illness does not mean we can’t improve.

In the past four years, I have reduced my average migraine duration from 3 days to about 8 hours.  I have reduced the frequency from twice a week to 3 times a month.  The average severity is down from about a 7 to about a 3 on a 1 to 10 scale.  I no longer catch every cold I encounter, and most days I am not so fatigued I need a nap to get through the day.  In 2004, I was sick, unable to function, 26% of the time.  In 2007, it was 18% of the time.  That’s a difference of 30 days.  I’ve gained a whole month to live and enjoy my life in, to be with my family, to help my clients, to walk in the woods and fields.  I believe this kind of difference is possible for most of us.

How did I do it?  Good medical advice, finding what medications are right for me, nutritional supplements, chiropractic, massage, exercise, vitamins, a diet high in fiber and natural foods and low in sugar and refined flour, bio-identical hormone replacement (The Wiley Protocol), getting on a regular rest schedule, learning (slowly, slowly) not to push myself, taking on a daily practice of giving up my perfectionism, meditation, creating a very detailed calendar to track migraines and illnesses, treatments and triggering factors.  Being a dedicated manager of my own life.  More about all that another time.

This morning I sprayed my achy sinuses with colloidal silver spray (Ag-Cidal), standing before the bathroom mirror, looking at the rings around my eyes, feeling like I would keel over any minute.  And it struck me – what if this is as good as it gets?

If it is, my task is clear. I get to live the best life I can possibly live, with these conditions.  I know, I said this yesterday.  So maybe I’m a slow learner!  Or maybe learning isn’t all at once, maybe it spirals around, enabling us to see things in new ways, at deeper levels.  Whichever way it is, what I saw today is priceless.   If this is as good as it gets, it’s still pretty good.  I love the people in my life.  I love my house and my little town, the woods and fields around, the big exciting cities nearby.  I love my comfy bed where I have been working all day in my pajamas.  I love the work I do, and writing for you, and that I can earn a living without going to some job where I’d get fired for being sick so much!  Tomorrow, or the next day, or the next, I’m going to get up, clean house, reschedule my canceled appointments, and go out for a walk.  Today I’m staying in bed.  And it’s pretty good!

- Megan Oltman
The Migraineur-preneur

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Posted in Film, Managing | Comments (1)

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