Free my Brain from Migraine Pain

Chronically Ill? What Are You Doing for Fun?

Fun?  Megan, come on, what do you mean fun?  I get up, I take meds, I go to work, I try to make it through the day, I come home in pain and try to do the minimum I can to get by, feeding myself, family, pets, doing laundry, paying the bills, I collapse as soon as I can.

Fun?  Everything I used to do for fun is gone - I can't... drink, smoke, go out in the sun, exercise, go to rock concerts, go to noisy/smoky bars... fill in the blanks.

Fun?  I can't afford to have fun.  My money all goes to doctor bills, medications, co-pays, insurance premiums...

Fun?  Look, I can't have fun when my basic responsibilities aren't being handled.  I'll have some fun after I've felt well enough to finish the taxes, clean the house, mow the lawn...

Have I covered everything?  Any other objections you can think of?  I want you to know I have lived my life at times inside of every one of those objections.  Who has been my biggest killjoy?  Not Migraine disease, chronic fatigue, sinus infections, nasty bosses, demanding clients or disbelieving relatives, but little old me.  My own biggest Killjoy.

But I am taking a stand for Joy, alive and well.  This is my life.  Now.  Imperfect as it is.  If I wait to get everything done first and then have fun, two things will happen.  I will never get it all done, and I will never have any fun. 

Do I want this on my tombstone:  Got it all done?  By the way, even if I want it, it's never going to happen.  As fast as I can do something, no, even faster, the more stuff to do gnomes are creating more stuff to do. 

And even if I give up on trying to get it all done, I also have to give up that I will have fun when I feel better.  What if I don't feel better?  Sorry guys, but what if this is as good as it gets?  Don't stop hoping and working and fighting, but I could die tomorrow.  This is my life.  Now.

So what do you do for fun? 

What gets you up in the morning?

What do you look forward to?

Your life is happening now, imperfect as it is.

What restores you, restores your perspective, where is your creativity?

Laugh.  Play.  Laugh some more.

I'm crocheting a granny square scarf.  Kind of silly and retro-60's but I enjoy it.  I am clearing my front porch little by little preparatory to stripping off the ratty old indoor-outdoor carpeting and painting it. I'm walking in the park every day I feel well enough.  Sharing books to read with my kids & husband.  Taking DVDs out of the library.  Mostly I'm concentrating on finding fun things for when I'm sick or my head hurts, and taking time for fun on the weekends, whether or not we've gotten through our house projects agenda.  And making plans with friends and family, not worrying whether we might have to cancel them.  Making them anyway.

- Megan 

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Between a Rock and a Hard Place - How do We Choose?

The first in a series of posts on Migraineurs making choices for our health care and our lives.

How do we choose?  We are faced with choices on a daily basis. We lose sleep over them; they feel momentous, life-changing.  Rarely are they an Indiana Jones moment:

1. if I step on the wrong step it will crumble below me and hurl me into the rat/snake/cockroach infested pit, or
2. if I stake all on drinking from the gold cup my eyeballs will melt and I will desiccate into a human husk, so that the 2000 year-old crusader can say “he chose unwisely.” 

Most of our choices change our lives more gradually!

For those of us with Migraine disease and chronic illness, choices often revolve around

1. what treatments to try, and
2. how to manage to make our living.

Most choices in life are reversible; we can change our minds, have a chance to learn from our mistakes.  Usually there is no one clear right choice.  In medical situations we often wish there was one.  How about the doctor coming to us and saying, “Well, Ms. So and So, here’s the choice 

1. If you take this course of treatment it will cost you $2500 and you will feel worse for 2 months, 3 days and 16 hours, but then you will lose 30 pounds, become a natural blond, your Migraines will cease forever and you will never age another day.

 2. On the other hand if you don’t take the course of treatment your fingers will gradually turn to pretzel sticks and crumble away, your brain will become a giant chicken heart and eat Philadelphia, your best friend will never speak to you again, and you will have a Migraine every day forever.” 

I don’t know about you, but I’d go for the treatment.  And I don’t even want to be a blond!

Okay, I’m being extreme.  I hope I didn’t lose you there in all my silliness; there really is a point.  It is rarely given to us to know whether we are making the right choice, before, during, or after.  We have to weigh our options, but then we just have to choose. 

Before I had my first child I fell and herniated a disk in my low back, causing two years of back pain.  Then I had a difficult labor with an erratic pattern of contractions, wearing me out without making progress.  After 18 hours of labor, I chose to use pitocin, a synthetic hormone, to stimulate the labor, and the pitocin made the contractions strong and painful enough that I felt I needed anesthesia.  I had to choose between taking pain-killers and having an epidural (where anesthetic would be injected into the dura, or sack, around my spine).  With an epidural there was a chance that my disk problem could become worse, even to the point of permanent back pain.  With pain-killers, if I ended up with a cesarian section, I would need general anesthesia.  The choice was to be awake for my daughter’s birth and risk disabling back pain, or to risk being knocked out for her birth with no back complications.  I chose the epidural.  I did have a cesarian; I was awake; and I did not develop any back problems from it. 

My husband and I will never forget when I was lying in the birthing chair, pitocin-induced contractions sending me into ever higher spikes of pain and exertion, trying to make a choice in the panting moments between.  We were 31 years old, and we felt like we became adults in that moment.  If I had ended up with disabling back pain, I don’t know if I would have said it was the right choice.  To be awake and hold Rachel in the moment after she came into the world was a joy I did not want to miss.  That was what I chose.  But who can say if it was the right choice?   

The choice I made recently was to start on Migraine preventive medication.  I spent at least 6 months making that choice.  It was a choice I was considering for at least 4 years.  Sometimes a choice needs to stew on the back burner of our minds.  In that 6 months I:
•    Found a doctor I could trust (which took several tries and months of waiting for appointments);
•    Did a lot of on-line research, and read about other’s experiences with preventives;
•    Recommitted to my meditation and relaxation program;
•    Tried magnesium and B2 supplements;
•    Tracked my Migraine numbers; and
•    Talked about the decision with my friends on and off line, my husband, my family.

Eventually, the choice just felt clear. 

I will be returning to this subject of choosing in several more posts in the near future – if you’ve read all the way down here I’ve kept you too long already!  What I’ll leave you with today is to say that those times when you must make that life-changing decision right now are rare.  We usually have some time to make our choices.  Use that time.  Let things simmer on the back burner.  Let your subconscious mind do its job.  Will you make the right choice?  Nobody knows.  But you can make the choice with much less anxiety in the meantime.

- Megan Oltman

                                Pretzel sticks image coutesy of Windell Oskay; image of window at Mesa Verde is by me to illustrate being between a rock and a hard place - Mesa Verde is all rocks & hard places.  And amazing.

We’ve moved! For more on managing life with migraine please visit us at www.freemybrain.com

How Am I? As Well As Possible, Thank You!

AWAP has been making the rounds on some of the Migraine forums lately - so I googled it and got many choices:
Abused Women's Advocacy Project
Any Word Any Page
Aftermarket Wholesale Autobody Parts
Animal Welfare Audit Program
All worthy choices, I'm sure, but...

I'm talking about As Well As Possible.  A wish for the chronically ill - not, "have a great day!"  But "have an AWAP day!"  Not "I'm feeling fine!"  But "I'm feeling AWAP!"  I sign off on notes and emails to my chronically ill clients and friends, "wishing you pain-free days and nights."  It is my wish for them, my earnest wish, and it is my wish for myself.  But sometimes it's unrealistic.  We must walk a fine line between powerful hope and attainable goals.  Between reaching for the stars, setting our sights high, and accepting the reality of our lives.  I work and strive for the day when my Migraines, and yours, are a thing of the past.  But if I expect that to be today, I may be setting us both up for disappointment.  

When I was little, I was taught that when people asked how I am, I was to say, "Fine thank you, how are you?"  The explanation for that stock answer is that people are asking in order to be polite, and they don't really want to know!  Is that true?  Sometimes it is.  Every person I encounter in business, every acquaintance I run into in the grocery store, does not necessarily want to hear the details of my illnesses.  I don't necessarily want to share and go into it with all of them either.  So what do I say?  I try to avoid saying "fine."  I often say I'm okay.  Or not bad.  On those occasions when I feel great, I say I feel great.  (Hey, it does happen!)  But if I say I'm fine when I'm not, I'm perpetuating the invisibility of my illness.

With people in my life, I try to strike a balance between being real and being upbeat.  

• Why be real? Because the people that care about me do want to know and because I want them to know; they are part of my support system. 

• Why be upbeat?  Because I don't want them to worry and because the more upbeat I am, the better my life is.  

When we live with chronic illness it is very important to enjoy as much as we can of life.  To find the joy where we can.  And so for me to be AWAP means that I am living the best I can today, maintaining a sense of humor, being productive where I can, having as much fun as I can.  It means that I may be chronically ill but I am not overcome by it. 

Sometimes my friends and relatives say, "How's your head?" or "Having any Migraines lately?" or even "I hope you haven't had any of those Migraines," or "Migraines better?"  Of course people want me to be better.  I want to be better too.  When a friend is ill, we want them better.  What else can we wish them?  So I try to find an answer that acknowledges their caring, and acknowledges my reality.  Today I am As Well As Possible.  I am not in constant pain.  The on and off Migraines I've been having for weeks are off at the moment.  I have some energy and I am getting some things done.  My dishwasher is fixed.  My kids make me laugh.  The field is full of deep yellow goldenrod and deep purple asters.  I am grateful for my life.  AWAP      

- Megan Oltman 

Blog Carnival - Improving Doctor Patient Communication

Just in time for my Migraine specialist visit next Tuesday, Diana Lee has posted the September Headache Blog Carnival - Tips for Improving Doctor Patient Communication over at Somebody Heal Me.  I'm going to have a lot of reading to do!

Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us. Visit the link to this month's carnival for a collection of informative entries on improving doctor patient communication.

- Megan Oltman

Can You See my Pain? Can I See my Pain?

It's Invisible Illness Awareness Week, a worldwide effort to bring together people who live with invisible chronic illness and those who love them.   According to the Invisible Illness Blog, nearly 1 in 2 Americans have some kind of chronic illness.  From heart disease to mental illnesses, cancer, lupus, chronic fatigue, Migraine and headache disorders and many others, people are suffering all around.   While our illnesses may be invisible, giving no outward visual signs, why are they so unknown to those around us?

The statistics on Migraine disease are staggering.

• About 12% of the human population has Migraine disease (at any given time).  That's about 1 out of every 8 people you know.
• About 20% of the human population will have Migraine disease at some time in their lifetime (since it may develop in childhood, adolescence or adulthood, and since it sometimes fades or disappears with age).  That's about 1 out of every 5 people you know!
• About 47% of Migraineurs have 3 or more Migraine attacks per month.  That's about 1 out of every 17 people you know!

Given those numbers, why is this disease so misunderstood, un-researched, underfunded, and the treatment options so undeveloped?  Why do so many people, even doctors, think it's "just a headache"? There's enough for several more posts in answer to that question, but I think invisibility is one of the major reasons.

Think about the invisibility of head pain.  Unless someone is highly attuned to changes in our eyes and expressions, or the cue of hand to forehead, they will not know when we have a Migraine attack.  It's not like they can see the hammer knocking us on the head!  Even more significantly, perhaps, it's hard for others to understand how we might feel fine today, but be unable to get out of bed tomorrow.  It's hard to understand the long term consequences of frequent or chronic pain.  Migraine can increase stroke risk, and Migraine disease can cause brain damage over time: this is recent knowledge.

There is much we can do to educate others, to explain to those around us, to rally for more research, to insist on accommodations at work and adequate treatment from doctors, emergency rooms, and insurance companies.  But I think one foundation of the problem lies in how invisible this illness even to ourselves.

Last week I practiced saying "I am chronically ill."  I said it to a number of different people, and told it to myself in the mirror.   Big deal?  It is a big deal.  It is the reality of my life for most of the last 13 years, yet I have a very hard time accepting it.  I am a meticulous record keeper.  I keep a very detailed Migraine and Wellness diary where I track not only Migraines but my sinus infections, my fatigue, and my dizziness, among other things.  I can tell you that over the past 4 years, I have been sick, with my ability to function significantly reduced, 25% of the time.  It's probably higher than that, because I have a lot of Migraines in the evening, but if I have worked and functioned most of the day, I have counted that as a well day.

I am one of the lucky ones.  Many chronically ill people are sick more than half the time.  Since I am in business for myself, I can set my work up to be flexible and take the time I need for myself.  My ability to meet deadlines and my income do suffer.  Imagine having a job, and needing to take 6 sick days per month.  That's what my numbers translate to. 

Those are the facts, and yet it is very hard to accept that I am chronically ill.  If you're not sick every day, it's easy to fall into denial again.  To forget that there are limitations to what I can do.  That even when I feel great I need to be very cautious and marshal my energy.   That things I used to do are not available to me any more.  That I need to adjust the standards I have measured myself by. 

I need to be as kind, forbearing, patient, understanding and loving towards myself as I would be to a friend who was chronically ill.  Why is that so hard?  I need to accept where I am without giving up hope, and while still striving to take better care of myself, get better treatment, do everything I can to be as well as I can be.

When I am caring for myself in this way (and I do manage it at times), it is easier for me to be real with the people around me.  To explain my illness, to help them understand.  I need to have my illness visible to me; then I can help make it visible to others.

- Megan Oltman

When is it Time to Use Migraine Preventive Medication?

When is it time to use Migraine preventive medications?  It has been a difficult decision for me, as it may be for many of you.  There are clear medical guidelines, and recent research that backs them up.  And yet it is not an easy step to take.

3 or more Migraine attacks per month

Headache specialists will generally prescribe Migraine preventives if you have 3 or more Migraine attacks per month.  My HA doctor told me his guideline is one per week, on average (which sounds very much like 3 or more per month).  If you think about it, a Migraine every week, or nearly every week, is a threshold level for having a serious disabling impact on your life.   Every week you will lose hours or a day or more to pain, photophobia, nausea, whatever package of symptoms you tend to have.  You will miss work, family time, social time.  You will waste hours in a darkened room.

Silent Brain Damage

There's more to it than the impact on our daily lives.  Recent research shows that Migraine attacks at a frequency of 3 or more per month, over an extended period of time, leads to brain damage.  The evidence is now very strong that Migraine is a progressive brain disease; it worsens over time.  The more frequent, and longer time since onset of Migraine attacks, the greater risk of damage.  The damage shows up as lesions in the white matter of the brain.  The researchers called it "silent brain damage" because there are no known effects of this damage - yet. 

Teri Robert, author of Living Well with Migraine Disease and Headaches, discussed the implications of this research in her recent article on My Migraine Connection,  "Yes, Migraines can Cause Brain Damage."  Teri gives us an excellent explanation of the research, concluding that:

Migraineurs who experience frequent Migraine attacks and / or have a long history of Migraines are at increased risk of "silent brain damage," brain damage that (so far) does not seem to cause any symptoms. This again shows that reducing the frequency of Migraine attacks (aka Migraine headaches) is critical. 

So why wouldn't you go on preventives?

I have averaged 7 Migraine attacks per month for the last 9 months.  I have been considering preventive medication for the last 8 months.  My hesitation comes from:

• a reluctance to take strong medications that will affect my central nervous system. 
• a history of being sensitive to medications and their side effects.
• a desire to take a natural approach to caring for my health.
• the fact that I had a 50% reduction in Migraines a few years ago from regular relaxation practice.
• the fact that there are no medications that were developed specifically for Migraine prevention, which seems to often lead to the need to try many different medications to find the one (or combination) that works for a particular person.
• the sense that it's easier to deal with the devil I know (Migraine attacks) than the devil I know not of (medications and their side effects).

I suspect that many of you who are reluctant to try preventives have some of the same reasons.  Please do leave a comment to share your thinking.

I will be starting preventive medication in less than two weeks when I next see my headache specialist.  I believe in a holistic approach to dealing with Migraines, including (among other things)  relaxation, meditation, rest, exercise, physical therapy, massage, diet, trigger-avoidance, and appropriate use of medications.   At this point, preventive medication is appropriate!  I need to stop losing 6 - 9 days a month to Migraines. 

I have my hesitations about the "better living by chemistry" theory.  I think there are inherent conflicts involved in our pharmaceutical production being governed by a profit motive.  However, that does not mean that drugs don't save lives and prevent or mitigate disability.  We need drugs available, and we need much better choices in drugs than we have now.  Holistic approaches can reduce Migraine frequency, they can help, but cannot change our inherent neurological make-up.  I use supplements and diet to care for my overall health, but if I got appendicitis you bet I would go willingly to that surgeon.  Knowing that I am at risk of brain damage, you bet I will take the drugs that reduce that risk. 

- Megan Oltman
Embarking on the pharmaceutical unknown.  Wish me luck!

                         Pill image courtesy of [O*] 'BharaT; brain image courtesy of Gaetan Lee.

We’ve moved! For more on managing life with migraine please visit us at www.freemybrain.com

What Do Migraineurs and Movie Stars Have in Common?

Good looks?  Great personalities?  Multi-million dollar incomes?  Well....  Actually I was talking about shades.  Great big stunner shades.  Jackie O glasses.  Bright light being one of the biggest Migraine triggers, a good pair of dark sunglasses is a must for a Migraineur.  Many of us really can't be outside without them.  Some of us even wear them inside.  I don't find that necessary most of the time, but during an active Migraine attack I've been known to wear them indoors. 

What should you look for in a good pair of sunglasses?  Do:

• Try them on!  They need to block light coming into your eyes from every direction, especially above. 
• It's also important to try them on to be sure they stay on without putting pressure on your head.  You don't need to avoid the glare trigger and then get a Migraine from having your temples squeezed!
• The lenses need to be dark enough.  You won't know that unless you step out into the bright sun with them on.
• Get them polarized.  This cuts glare way down.
• If you can, get an anti-reflective coating on them.  This also cuts down on the reflection and glare coming into your eyes.

I also have a Don't for you:

• Don't get Transitions-type lenses!  (Or at least, don't think of them as a substitute for real sunglasses.)  These are the lenses that darken in sunlight.

Why not?  A year ago I got transitions lenses on my regular glasses.  Here they are, barely darkened in the bright light on the deck (notice the squinting!):
They never get as dark as most of us will need.  They won't darken at all unless there is UV light shining directly on them, which means that if your car has UV blocking glass (as most do these days), they will never darken in the car, no matter how bright the sun and glare you have coming into your eyes.  The optician was very annoyed that the opthomologist had recommended them!

I bought a good pair of prescription sunglasses this year, since I can't manage contact lenses (another set of Migraine triggers involved for me).  They were about 5 times more expensive than any sunglasses I've ever bought, but they should last 5 years.   As long as I don't lose them!  And look how glamorous they make me.

- Megan Oltman
I hear Hollywood calling!

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Migraine, Chronic Illness and the Not So Happy Homemaker, or All in a Labor Day's Work

I do not claim to have ever been a great homemaker. I enjoy well organized space. I enjoy design, and line, and tweaking the environment around me for comfort, beauty, and efficiency. So perhaps I am a perpetually frustrated homemaker, because these joys are rarely ever mine. I live in a state of clutter, disorganization, confusion and catch-up. Uh-oh, now I’ve told the truth. Will you ever listen to what I have to say again?

Wherever you start on the spectrum from neat-freak to pig-pen, Migraine and chronic illness will hamper your ability to get it all done. I remember a time before my Migraines and sinus infections became frequent, before chronic fatigue reared its ugly head, and, let’s face it, before I had children, when my home was tidy on a weekly basis, at least. When Danny and I first moved in together I wanted to get up on Saturday morning and get the housework over with, and then enjoy the rest of the weekend. He wanted to lounge around on Saturday morning and get to it later. Which generally meant we’d be cleaning at 5 pm, when we had plans to go out later, and we would do less than I wanted, and I would worry about it and not get to relax at all. But this is a blog about Migraine, right, not about relationships?  I thought that issue was difficult at the time. What I deal with now is of a different order of magnitude.

I have a generous, hard-working and willing husband who tries to maintain order in our home, with or without my help. He is also a fabulous cook and does most of the cooking. I have a nearly adult daughter who is a willing helper when she has the time, and a son who has come a long way with being helpful. I am also the one of the four of us who is not diagnosed with ADHD. This means I am the only one who can really multi-task. It means I’m the only one who notices a lot of the clutter. It means that I am the Captain of this house. So if the Captain is in sick bay, the ship may end up on the rocks.

I have had, this past 12 months, the worst year for Migraine and the year with the most sick days, since I began my Migraine and wellness diary 5 years ago. That means the house is in an advanced state of mess. It had never been tidy, but it’s worse than usual. Deborah at Weathering Migraine Storms posts about her craft projects and I feel jealous – I love crafting too, but it seems pointless to decorate when everything is a mess. The energy I’d like to spend on creativity, or on organizing, is so often taken up with the basics, dishes, kitchen counters, laundry.

But I have to stop and count my blessings. Unlike some Migraineurs, I can still work for a living. So if my energy and time is limited, and I spend it helping to keep a roof over my family’s head, I can’t fault myself for the state of things under that roof.

My advice to you, and me: cut yourself some slack. Do the best you can and take the time to enjoy life.  Keep blocking out your time in the calendar to make the most of the time you have, working from your priorities.  See More Time Management for Migraineurs: Managing the Time we Have for some more ideas on how to do that.  As for me, today I’m post-drome and having some vertigo. I am doing my best to make my way through a back-log of dishes (the dishwasher is broken) and fold the laundry, with plenty of resting time in between. Happy Labor Day!

- Megan Oltman

                         Dirty dishes image courtesy of Easternblot - eva.

We've moved! Come over to our new site www.freemybrain.com for new content on managing life with Migraines and chronic illness.