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This is my journal of living with Migraine and other chronic illness. Trying to live well, to live a purposeful life, with chronic illness, since I don't get the choice of living one without it!

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 the 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

Tags: acceptance, anger, Dylan Thomas, imitrex, migraine, rage against the dying of the light, serenity prayer
Posted in Managing, Musings | Comments (2)

Pain on the rebound

January 14th, 2008

Pain is as diverse as man. One suffers as one can. Victor Hugo

The worst pain I have known was not in childbirth. My brother, who is a physical therapist, told me that he sometimes asks women (if they have given birth) how the pain of the physical therapy compares with labor pains. I have had migraines that were worse than any labor pains. I have had injuries worse than any labor
pains.

At the end of labor pains comes a blessed event, a birth, the beginning of a life. We finally meet this child who has kicked, wriggled and squirmed inside us all these months. And physical therapy is pain tomake better an injury, to cause healing, improve function. The outcome lacks the drama of birth, but at least we suffer the pain for a good cause.

The worst pain I ever felt was when I broke and dislocated my elbow. The birth theme comes into it – I broke it 8 months pregnant with my second child. I had dropped my daughter at nursery school and was taking an early morning walk, dutifully keeping fit and getting ready for labor. I stepped on a patch of black ice and slipped. My feet flew to the left
and I came down on the heel of my right hand, with my arm extended and elbow locked, taking the entire weight of my pregnant body on that arm. I managed to walk the two blocks back to the nursery school, crying with pain. I walked in and interrupted the teacher and parent who were talking in the doorway, said “Excuse me, I think I broke my arm,” and promptly went into shock.

I have had migraines where I cried with the pain, crying making the pain worse, I moaned with the pain, moaning making the pain worse, I vomited from the pain, vomiting making the pain worse. The best that can be said for a migraine like that is that you know it will pass, in a few hours or many, that this will not
be forever.

I can’t speak to severe chronic pain – I know there is pain that makes people wish to die. I can speak
to moderate chronic pain – the pain of daily headaches, pain that nags, wears you down, beats you, backs
down some, comes back. When I had medication rebound headaches, I learned that I had to endure the pain to get to the point where I would stop rebounding. And since I am sensitive to medications, this has happened more than once.  And so I learn it again.

When I had a dislocated elbow, the worst part was when the doctor “reduced” the dislocation in the ER, popping it back into place. Few things make me scream aloud. That did. That was the worst pain I ever felt. Worse than the break, worse than any migraine, worse than labor pains, or my herniated disk, or my other broken arm. And as soon as it was over, when the elbow was back in place, even still broken, the pain ended.

So yes, this is my (tortured) analogy. This is where I was heading. My heart goes out to everyone in pain. Seek comfort and pampering as best you can. If you are having rebound headaches, just like reducing the dislocation, just like physical therapy, the pain will lead to a good outcome – enduring it, moving through it, will end it.  I’m sorry it’s not a magic pill.  It’s the best I’ve got.  Just hope.

– Megan

Feeling well, wishing you the same

morning breaks courtesy of lida rose

Tags: chronic pain, rebound headache
Posted in Musings | Comments (1)

These are the good old days

January 12th, 2008

Thanks to MJ for my topic today.  I’ve got the Carly Simon song “Anticipation” stuck in my head now, which is rough because I only remember half the tune and the lyrics.  But the final refrain says “Stay right here, ’cause these are the good old days, these are the good old days, these are the good old days…”  (Just you wait ’til  I figure out how to get an audio file in here and I’ll have you humming it too.)

Yesterday I wrote about Fridays…  getting nostalgic about a time when I used to go out on Friday nights.   It’s easy to get nostalgic when your head hurts – I can even get nostalgic for last Saturday, when I didn’t have a migraine or a sinus infection!  How about Thursday?  That was a good old day!

Truth is – I never went out every Friday.  Plenty of times of I was happy with a pizza and crappy tv.  PJs and slippers and a game of Scrabble.  We did eat out a lot on Fridays, because who wants to cook at the end of the work week?  But we lived in a big city, had disposable income, didn’t have kids yet, that made it easy.   And sometimes Friday was dinner and dancing – a movie – time out with friends – it did happen!

My Frigraine Friday wasn’t too bad.   Imitrex worked for awhile; I got some work done but didn’t overdo it; Danny made an easy comforting supper; we watched “Blithe Spirit” – an old Rex Harrison flick – and ate chocolate truffles.  The headache is still with me today, but mild.  (I refuse to call it a Saturgraine… that would be silly!)  I’m well enough today to write this.  This morning I made a dent in those Friday dishes.  I have plenty to be grateful for.  Look at this girl here – Kimi doesn’t long for the good old days!  A good belly-scratch makes it the best day ever!

So what’s yer point, Migraine-brain?  It’s hard to keep perspective when your head hurts.  It’s always dangerous to draw conclusions when you’re down.  Am I glad to be where I am today?  I’d rather the house was cleaner, the funds were bigger, my dress size was smaller, my migraines were fewer, shorter, weaker…  Would I pay money to be 25 again?  I would not.

Here’s to finding the joy in where you are, right now.  Wherever that is.

– Megan
Wickity-Whack but still ticking

pizza image courtesy of wEnDaLicious/wEnDy

Tags: anticipation, Carly Simon, imitrex, living in the moment, managing life with migraine, migraine, nostalgia
Posted in Managing, Music | Comments (0)

Friday + Migraine = Frigraine

January 11th, 2008

Early warning system for frigraine – tightness around the temples starting 4:30 p.m. The “ohmigod
my desk is such a mess” in the throat coupled with the “waddanidiot I wasted so much time this week” in the stomach. The compulsive need to do tedious, detail-oriented, eye-straining tasks starting at 4:45 and continuing until well past the promised stopping time of 5:30. Dragging the reluctant body from the messy desk and going into the house. Looking
at the kitchen which somehow never gets cleaned on Friday mornings and plunging
in to the dishes. Picture a furrowed brow. Feel the aching neck and shoulders. Hear the doorbell ring. Have no surprise at the arrival of the Frigraine.

I used to go out on Friday nights. I used to work longer hours, in a higher stress job, and go out on Friday nights. I used to leave my desk, whatever state it was in, with some regret but a good deal of relief, and go to the movies, dinner, dancing. Thank God it’s Friday lets party! Okay, truth be told, I used to be 20 something, single, then newly married, and childless. I used to work at a steady job for a salary, rather than being – gulp – an entrepreneur, with a big mortgage and college looming in less than two years. Oh, and I used to get a migraine maybe once a year, a sinus infection or two each winter, and had never heard of
chronic fatigue. Nobody had. Dang new-fangled diseases. Who sez I ever wanted to be so up-to-date?

So, here I am, nearing 50, with multiple chronic conditions. Feh! Am I gonna to turn into one of those old people who just talks about her medical crap? I’m just warming up – let me tell you about my sciatica! No, but seriously – it’s boring. I bore myself. I don’t need to go out dancing every Friday – I’d settle for a nice walk, dinner out, dinner in, hanging and talking with my guy. I’d even settle for the dirty kitchen, just without the frigraine! I
like cleaning up the kitchen to some good r&b – but not when all the overhead lights are drilling into my eyes and every drum-beat is inside my skull.

Something tells me I just need to take Fridays off! Four day work week, anyone? Now yer talking!

– Megan Oltman

Hurting now.  Took the meds, Fingers crossed.

open door courtesy of Emdot – marya
dirty dishes courtesy of Easternblot – eva

Tags: anxiety, migraine, work stress
Posted in Managing | Comments (2)

Our ancestress – a fable

January 10th, 2008

Back in prehistory, in hunter-gatherer days, imagine the dangers faced by a tribe of cave-dwellers. There were saber-tooth cats, cave bears, cave lions, cave-ins, earthquakes, floods, not to mention the dangers inherent in any group of humans living together in close quarters – the dangers of disagreement, of in-fighting and division, breaking the group apart. Such a tribe would need to work as a unit to survive, putting the good of the group above that of individuals, having a role for each group member to play.

Imagine, in such a society, the value of a highly sensitive individual. An individual whose nervous system was very finely tuned, perceptive of danger, aware of undercurrents. An individual who could function efficiently under high levels of stress, at least for a short time. Such an individual could serve as the tribe’s early warning system. Feeling the tremors first, perhaps, grabbing the children out of the way of the predator, warning tribal leaders of undercurrents of division among the group. Sometimes she saw visions, light and color, patterns and pictures only she could see. Imagine that such an individual would be highly valued, would have status, might even be a preferred mate and therefore be more likely to reproduce to hand down her sensitivity to later generations.

She was the one with the migraine brain. And when the crisis passed, her nervous system would let down not with a sigh, but with a crashing, pounding, nauseating headache. With blinding pain, light and sound sensitivity. What use was the migraine to the group, let alone the individual? None at all. Evolutionary traits often carry consequences – the useful sensitivity comes with a tendency to break down when tolerance limits are passed. Migraine is a side-effect of a highly sensitive nervous system. But while the migraine itself did not serve the group, the individual with the migraine brain did, and so we imagine she was cared for, not cast aside as disabled and weak, but nurtured through her crisis, as she had supported the tribe through its crisis.

We are her descendents, and our migraine brains are the same as hers was, all those millennia ago. We are highly sensitive, often artistic, intuitive, perceptive of others’ feelings. We generally function well under stress or in a crisis, to a point.  We handle a high degree of stress and go into hyper-drive, accomplishing great things, to a point. But our world is very different from that of our ancestress. We rarely face a saber-toothed cat or a danger of that magnitude. But we face a world of unremitting stimulation, information, noise, flashing light, increasing demands on our time, our brains, our emotions. We face a constant high level of stress. Human brains are not suited to cope with life in the 21^st century, especially not migraine brains.

– Megan Oltman

Making Rain out of Migraine

lightning image courtesy of Ian Boggs

Tags: evolution, migraine, Migraine brain, sensitive nervous system
Posted in Musings | Comments (5)

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

Tags: acceptance, Helen Hunt, Jack Nicholson, managing life with migraine, the Wiley Protocol
Posted in Film, Managing | Comments (1)

From my bed of discontent

January 7th, 2008

This is my journal of living with chronic illness.  Trying to live well, to live a purposeful life, with chronic illness, since I don’t get the choice of living it without!

Journal entry from August 22, 1995 – “This is my fifth sinus infection since last November or December. It must be a dust problem; the house isn’t clean enough and I can’t seem to find the time to really keep it clean. The piles of things to do, literal and figurative, collect enough dust to keep me sick. But now the front of my face feels like it could explode and all I want is chocolate.” That was when Adam, my youngest, was 6 months old, my in-laws, Marika – 6 weeks dead, Walter – 3 months dead. Five sinus infections during that pregnancy and post-partum, through those deaths and mourning.  Sinuses dripping along with the tears we shed.  I’d say that was the start of the chronic sinus journey. 12 1/2 years ago.  I had a baby and a four year old, a law practice I hated, a bereaved husband, and life felt way out of control.

I remember the first time the sinus pain hit – I was 13.  Bronchitis, pneumonitis, those were my common issues then, and into my 20’s.  When the front of my face started burning that evening, riding the train home from a play in NY, I remember thinking that sinus problems sounded like a very grown-up ailment.  Anything for distinction.  Dramatic child!

I don’t remember the first migraine – the first one I recognized as a migraine already felt familiar, like something I’d felt before.  A couple of big ones in my late 20’s, then one or two a year until I turned 43.  Then they became the ominous background chorus to the soundtrack of my life, the music threatens, looms, builds, then the crescendo!  The year I turned 43 I had 2 or 3 migraines a week.

Today I am writing from my bed of pain – well, not too much pain today but writing from my bed of discomfort doesn’t have the same ring to it. How about, writing from my comfortable bed of discomfort and discontent? Now we are edging closer to the truth. The bed is very comfortable. My sinuses are full of ache and pressure. My head is only a little dizzy if I’m propped up in bed – more if I sit or stand, a lot if I sit or stand for more than a few minutes. I don’t have a migraine, for 8 days now, hooray! The migraine beast lurks around my temples, ready to move in if I give it a chance, boohoo!

And as for discontent – I am discontented. Downright disgusted. After all I’ve done to beat this… after all I do to manage it… after 12 years of recurring illness.  No treatment, no respite.  I’ve had enough! Thanks, done my time. Ready for my parole. Hello? Anybody listening? Where is my parole officer, anyway?

I wonder how I can coach and advise people about living powerful lives when I am under the power of some recurrent infection in some cavities in my head. I keep thinking if I was really powerful I would stop having sinus infections and migraine attacks. (And irritable bowel attacks, and fatigue, and allergies, and medication sensitivities, and while I’m at it I’d stop being nearly 49 and start being 25 again. Oh Yeah! That would be power.) And so I live with this conundrum every time.  But it’s a false dichotomy.

As far as I can tell, here’s how it actually goes:

Being a powerful person without these chronic conditions may not be available to me.

Being a powerful person with these chronic conditions is available to me.

What does being a powerful person with migraine disease and recurrent sinus infections (and all) look like?

Like assembling all the information I can get about my conditions, and the best treatment plan I can, and accepting that the best treatment plan is a moving target.

Like staying connected with people when I am sick, and reaching out for support. Taking all my supplements and medications and resting when I am sick, no matter how much I wish I didn’t need to. Doing what I can to move my work forward, right here, from bed. This involves a real honest look, sometimes it involves checking with someone else if I can’t think it through myself. What can I do, without endangering my recovery? Lucky for me, I have a lot of writing to do today. I can do that right here, in bed.

It’s 6pm and my head is worse than earlier.  The stink-bugs are coming out of hiding, buzzing around the lamps in the room.  Never had them in the house before this year – and in January!  Frickin’ global warming! If they make me jump and squeal I’ll get that headache for sure, the one that’s threatening.  Stink-bugs must be accomplices of the migraine beast.

Fighting the good fight, against the beast, the bugs & the Martians.  Good luck to you in yours.

– Megan

Megan Oltman

Tags: Adam Oltman Porcher, Adam Porcher, chronic illness, migraine
Posted in Communicating, Managing | Comments (1)