Free my Brain from Migraine Pain

Migraine News from Between my Ears

A funny thing happens when you start blogging.  There is this little bit of celebrity that arises.  I can admit that like many people I once secretly wanted to be famous.  My friend Laura told me in High School that she pictured me as a kind of revolutionary leader, with thousands chanting my name.  If that had ever been my ambition, I'd have to say that I failed miserably.  I've made it through nearly 50 years of life and I don't think even dozens have ever chanted my name.  Not at the same time, anyway. 

But I digress.  I started this blog for a few reasons.  I wanted a place to share my thoughts on living with Migraine disease, and the other chronic illnesses I live with.  I particularly wanted to share my hope and strength, as someone who has come a long way in managing a life with these conditions.  I wanted to join the warm, intelligent, funny and committed community of Migraine and headache  bloggers and advocates who are making such a difference in the lives of patients and in advancing the understanding of this disease.  The big reason was this moment of truth I had almost a year ago, when I realized that my chronic illnesses are not just an impediment in my life; they are an opportunity to  share my professional tools and skills, and the wisdom I have accumulated, to help others manage their lives with Migraine.  I wrote a bit more about that a few months back in My Migraine Story.

I didn't really start the blog to keep the world posted on the doings in my own life.  I tell a lot of stories, partly because I come from a family of storytellers,and partly because I've always made points (with clients and anyone who will listen) by telling personal stories, about things that happen and lessons I learn.  So it's been a lot of fun doing that here.  And lo and behold, I learn that people are actually following (to some extent) what's going on in my life.  Little old me, Megan, Rachel & Adam's Mom, Danny's wife, Joan & Jim's daughter, Jon & Ellen's sister, the lady in the house on the corner by the field, the little red-head... that one.  It's a small and gentle sort of celebrity, but I find when I don't follow up on things I've mentioned, sure enough, you're actually listening, and sometimes you ask.

So the news between my ears...

• I'm looking for an allergist to determine whether I should even pursue this Medication Allergy  challenge test idea, because as my friend Medieval Writer of Sparkling with Crystals reminds me, anaphylactic shock can potentially kill you faster than a doctor can save you, even in the hospital with a crash cart standing by.  
• I'm spending a little time, just a few calls here and there, my head and energy levels allowing,  volunteering for my candidate's campaign.  Please get out and vote for better health care!  You don't have to chance feeling well enough on election day; you can vote early in many states - go to Rock the Vote to check your state's rules. 
• My difficulties with the Topamax are settling down.  We'll see what happens when I go back to Dr. G and increase the dose next week!  Tingling has disappeared and the cognitive effects are fading.  An unexpected benefit seems to that it is functioning as an anti-anxiety med for me! I am a pretty anxious person by nature, and I tend to obsess on things, but it seems like the slight loss of focus I have on the Topamax means I can't focus on something long enough to really obsess and get anxious! Kind of weird - but I'm just not worrying as much!  MaxJerz of Rhymes with Migraine pointed me towards this piece on Health Central's Anxiety Connection indicating that Topamax is sometimes prescribed in combination with other drugs to treat anxiety.  Who knew?  (Well obviously, someone did, but not me!)
• I don't think the Topamax is having a major inhibiting effect on my Migraines yet, though I haven't had a really bad one in the month I've been on it.  I am doing a very slow titration to minimize side effects and will probably increase the dosage when I see my HA specialist next week.  Judith Warner wrote a pretty good piece about her difficulties with Topamax (not named, but quite identifiable) in the NYTimes today, but they didn't publish my comment.  I am trying not to take it personally!
• Our Health Insurance Hassles and Headaches may turn out to be a blessing in disguise, NO thanks to Oxford (who I will still refer to as the insurer from hell) because it looks like there are a range of better, more affordable options out there for us.  I got a lot of info that may help others, too, and will try to do a whole post on it soon.  For others who are struggling with insurance, if you have children, be sure to check out your state's insurance coverage for children.  Some states now extend that to parents of children 18 and under.  I know this is no help for childless people or those whose kids are grown; you deserve health insurance too!
• In the meantime, I seem to be developing a lot of Acephalgic, or Silent, Migraines (phono & photo-phobia, dizziness, without head-pain) in the evenings.  It's better than having the head pain, but still means I have to retreat to my cave (i.e. bedroom) for the evening and can't hang  out with the family much.  Bummer.  More to talk to Dr. G about next week.
• And, (a drumroll please...) my biggest news... by next week (I hope) I should be launching my new website, containing this blog and other resources for Migraineurs, including relaxation teleclasses - stay tuned for more!  Hard at work on it now - soft greens and yellows - looking pretty - can't wait...

Hope your heads treat you well and you have an AWAP weekend!
- Megan Oltman

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

    

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 

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

August Blog Carnival on Dealing with Those who Don't "Get It"

August Headache Blog Carnival.  Slow and steady wins the race?  I'm a week behind here, but it's not too late for you to go read lots of good blog posts on the topic of "Dealing With People Who Don't 'Get' It."  It's posted over at Diana Lee's Somebody Heal Me.  Many thanks to Diana for another great collection of blog posts.  I'm particularly partial to James Cottrill's "How to Introduce a Migraine."  Try out "The World Health Organization says I have one of the world’s top 20 disabilities.  Guess which one!"  

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 basic strategies for coping with migraines and headaches.

Entries for the September 2008 Headache & Migraine Disease Blog Carnival on the theme of "Tips on Improving Doctor & Patient Relationships" are due by the end of the day on Friday, September 5th.

Posts that relate to the September carnival's theme will receive preference. Entries on topics that are particularly useful, educational or inspirational for headache and migraine sufferers are also welcome. Posts may be submitted through the form on the carnival website.

Handling Migraine Challenges: Helping Others Understand

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 left corner of this page.

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

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

Coping with Migraine: Claims of a "Cure"

I was recently presented with a dilemma here on Free my Brain. I want to encourage dialog and exchange of ideas, but I don't intend to provide an open marketplace for sale of migraine "cures."  (Though I will gladly support and even promote helpful products and services.)  Migraine is a complex, genetically based, neurological disease.  The frequency and severity of migraines vary enormously from person to person; so do the number and complexity of triggers and other contributing factors.  What we know now is that this is a neurological disorder, a differently ordered nervous system, if you will, which has existed throughout human history.  Like many congenital conditions, there may have been a valid evolutionary reason for this mutation at one point.  Maybe migraineurs were the human barometers, predicting disastrous weather changes for primitive societies.  I had fun speculating on the evolutionary basis of migraine in the post Our Ancestress: A Fable.

I have heard from many people who have done just one thing and their migraines have gone away.  To them I can only say mazel tov!   (Congratulations!)  Here is a bouquet of flowers to celebrate!   For some it is eliminating just one trigger.  For others it is a particular nutritional supplement, a practice of meditation, regular exercise, a medication, a surgery, pregnancy, menopause, a life or lifestyle change.   I don't know if there are statistics on how many migraineurs find relief from just one thing.  I do know there are large numbers of us out here who need to find a combination of factors to manage and control our migraines.  Here is a bouquet of flowers to console us!  There is no "cure" for a genetically based neurological condition, any more than there is a "cure" for my red hair and green eyes.   (Well, another 15 - 20 years may pretty well eliminate the red hair.)

A great place for some very basic facts and information about Migraine is the recent quiz at My Migraine Connection: Dispelling Migraine Myths.   The two books on migraine featured in the left side-bar on this page are both great resources for learning about migraine and how to manage it.  There is much we can do.  For most of us, we can reduce our migraines significantly.  You have probably heard me say before that I have reduced my own migraine frequency by about 50% through use of abortive medications, supplements, trigger avoidance, relaxation and meditation, and lifestyle changes.

Someone submitted a comment to one of my posts stating that 1) Migraine isn't a disease; 2) there is a cure for Migraine "within us;" 3) he had over 20 years of migraines which are now gone; and 4) you can "retrain" yourself so you have no more migraines; he then went on to promote his methods.  I am genuinely happy for the commenter that his migraines are gone.  I am certainly curious about his methods, and glad that he wants to help others.  I don't mean to suggest he had any but the best motives.  But I am wary of anyone's claim to have a cure.  After some deliberation, I decided not to publish the comment and link.  

There are two ways to look at "retraining."  A nervous system which can be easily triggered into a Migraine attack can be viewed as an over-excitable or hyper-reactive nervous system.  Regular practice of meditation and relaxation can help us reduce the excitability of our nervous systems.  Note that this is not a "cure;" it is a supportive exercise or practice which can strengthen our system's ability to resist triggers.  You could call this "retraining."

But there is another view of retraining which comes from an idea that Migraine disease is psychologically generated.  It is not.  It is a real, physical condition.  It is no more psychological than epilepsy or scoliosis.  I view with rage books like Louise Hay's "You Can Heal Your Life" which suggest that right thinking can solve all our medical problems.  She suggests that "Migraine headaches are created by people who want to be perfect and who create a lot of pressure on themselves. A lot of suppressed anger is involved..."  

And so, if we work like crazy in therapy, meditate, recite mantras and do whatever highly subjective steps Hay seems to think will enable us to let go of the anger and pressure, if we do all that and we still have Migraines, then what?  We failed?  It's like telling someone the devil is causing their Migraines and they just have to really believe in God.  "I do believe!"  "If you really believed the devil would leave you and your Migraines would be gone!"  "But I really do believe..."  It's just a very sneaky way of blaming the victim!

I wish we could do a scientific study of people who want to be perfect and who put pressure on themselves.  In the first place I bet you that's at least 75% of the population.  And I bet you dollars to donuts that 12% of all the perfectionists would turn out to have Migraine disease.  And I bet that 12% of all the non-perfectionists would have Migraine disease too.  What's the incidence of Migraine disease in the general population?  12%!  I think you get my point.

I have been told that if I only distinguished the beliefs from my past that were making me have Migraines, they would disappear.  I will admit I tried to do that.  Like anyone else, I have a past and beliefs were formed in it!  Some of those beliefs are limiting to me.  In a life of nearly half a century, with plenty of self-help, support groups, personal development courses, and therapy, I think I've managed to identify most of those beliefs.  So why am I not cured of Migraines?  Is it my fault?  Or, wait, could it be that I have a genetically based, incurable neurological condition?  Hmmm...  Which is the more logical conclusion?  And which is more empowering? 

For me, the answer is clear.  I am 49, a woman, 5'2", a redhead, a migraineur.  These are facts.  I get choices about what I do with those facts.  I am choosing to vigorously pursue better and better Migraine management.  I am not wasting my mental or emotional energy on "cures."  Or at least I won't, once I'm done with this rant!

- Megan Oltman            

Curing is good for meats, cheeses, wines, paints... Maybe our heads don't need it?

                         Hammer image courtesy of Darren Hester

Migraine Poetry

By now, I hope you've had a chance to read some of the wonderful poetry at the 2008 Putting Our Heads Together Migraine and Headache Poetry Contest.  Congratulations again to all the winners.  There were an enormous number of excellent entries - I don't envy the judges!

My own entry was way down the list.  With your indulgence, I reprint it here.

Never Get Used to It

We never got used to the drunk next door
who broke bottles on the stoop past midnight, cussed all night,
staggered into us as we left the apartment.
He was a feature of the landscape we were glad to leave
when we moved away.

Along with the upstairs landlords
whose children jumped off the couch above my head, all day,
while I napped with my newborn,
who thought 3 a.m. was a good time to install carpeting, KaChunk KaChunk all night,
who coated the back yard in weed killer, fumes rolling into our ground floor apartment – they were a feature of the landscape we never got used to.
So we moved away.

We never got used to the dirty old busybody next door with his nasty comments.
We never pulled up the blinds or trimmed the hedge on his side of the house.
We just moved away. Again.

You’d think you’d get used to the pain – it’s a bore. There’s no excitement in pain.
Just the startled moment when it comes again, crashing like the bottles on the stoop.
Just the deadly hours of enduring, KaChunk, KaChunk,
don’t pull up the blinds and let it look in. 
Never get used to the scraping, boring, searing, pounding.
Pain management?
I thought pain could recede, a feature of the landscape to ignore, like the cracks in the pavement.
I never thought this was a landscape I could not move away from.

No moving van. No packing boxes.
No new home without the pain.
Open your boxes and find the drunken, staggering, inconsiderate,
dirty old busybody pain.

No ear plugs. No gas masks. No prisoners taken. No quarter given. 
Never get used to it.

Respectfully submitted,

Megan Oltman

 

                                   Broken Bottles image courtesy of Vertigogen                                                                            Window Blinds image courtesy of Matt Callahan                                                                                     Packing Box image courtesy of Tim Herrick 

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

Coming Out of the Migraine Closet

When someone comes out of the closet, they take a stand, and they take a risk. For centuries, gay and lesbian people hid their identities in order to survive. Then a few people said “no more.” Decided to risk public censure, job loss, jail, so that things could change. And things have changed. Dramatically. There is still risk involved in coming out as a gay, lesbian, bisexual or transsexual person, significant risk, but there has also been a significant change in our society around this issue.

Are we willing to “come out” as migraineurs? Are we willing to tell people we have Migraine disease? To stop complaining about lack of understanding and take a stand, educate people? Are we willing to stand up and be counted – “I’m one too!” – and change the face and the perception of this disease? I thank the GLBT movement for an extremely useful analogy.

Sometimes we need to vent about how people see our condition as “Just a Headache” or “All in Your Head.” I have done my share of ranting on this point. We don’t want to have to educate people. It’s really not fair to have all this pain and have to explain it as well! (Do you hear your Mom’s/Dad’s voice in your head, like I do, saying “but life’s not fair!”) I also know it’s hard to show up as someone with a disease. A diseased person. A disabled person. A limited person. We don’t want the world perceiving us this way. Perhaps more significantly, we don’t want to think of ourselves this way.

Diseased, disabled, limited – these are common, automatic perceptions of those with visible illnesses. Being “in the closet” is not an option with a visible illness. Here again, the amazing and courageous movement for the rights of disabled people has changed public perception. The acceptance and accommodation of those who are differently-abled has come a long way, though there is still much further to go.

The blessing and curse of invisible illness is that it is invisible. No one can look at me and see that I have Migraine disease. If they are very perceptive, they might see that something is wrong if I’m in the midst of a migraine. No one can look at me and see that I have chronic fatigue. Sometimes they can see that I look very tired. No one can look at me and see that I have chronic sinus infections. Sometimes they can hear my hoarseness or congestion.

I think we all know what the curse of invisibility is. People do not understand our pain. They sometimes belittle it. Our employers may not accommodate us. Public events are not set up to make it easy for us to be there. Our dearly loved friends and family may think we are avoiding them, shirking responsibility, failing them. In a larger sense, invisibility means our diseases are under-funded, under-researched, medications are inadequate and specialists too few.

So what’s the blessing? When our disease is invisible, we can keep trying to show up as “normal.” We can avoid having potentially unpleasant conversations. We can avoid pity and put-downs. Of course, it's a mixed blessing because people do see that something is wrong. I suspect some of the put-downs come from people seeing something is wrong but not knowing what it is. I think I’d rather be seen as someone with a chronic illness that interrupts my life, than as a messy flake who can’t be counted on to show up!

We need to remember that we migraineurs are 12% of the population. 12 out of every 100 people. 3 out of every 25! Whoever you are talking to, chances are they know many, many migraineurs besides you! Even more significantly, according to some estimates, 40% of Americans have some kind of chronic, invisible illness. Whoever you are talking to, they have people very close to them with invisible illness!

Lately I have been way out of the closet as a migraineur. I am in this public forum, all over the web with my real name, as a migraineur. I have gone to my business contacts and talked to them about the  work I am doing as a Migraine management coach – and telling them that has involved sharing something of my personal story. I am someone with chronic illness who has built a business around my illness. I help others build workable lives around their illnesses. I can’t do that while hiding who I am.

These days when I show up at my business networking meetings, people ask me, with great concern, “how ARE you?” I told an associate recently, “feeling great today!” He breathed a little sigh of relief and asked “So your migraines are all gone?” (Hey, wouldn’t that be nice?) He wanted me to be better! It’s the kind of reaction I’ve been avoiding for years. “No,” I said, “it’s a chronic disease. It’s the way my nervous system is made. I wish they were all gone. But today I’m feeling great!”  He nodded, I shrugged, and we went on to talk about something else.

A few months ago I couldn’t have had that conversation. For now, I keep showing up, assuming that people are not malicious, they are just uninformed. And I inform them. Gently, and as appropriate. They ask me what I’m doing these days and I tell them I’m focusing on helping people with Migraine, people like me.

So hey, migraineurs, are you willing to come out and play, out here with me, out of the closet? I’d love to have your company. We can change public perception. We can create a world more responsive to our needs, more accepting of who we are.

- Megan Oltman

Don’t forget your sunglasses, it’s bright out here!

                                                      Closet image courtesy of Matthew Blank 

                                                      ADA Road to Freedom image courtesy of Jay Wilson

                                                      Cave exit image courtesy of David Wilmot

 

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

Migraine & Headache Poetry Contest

The Putting Our Heads Together Poetry Contest 2008 is in full swing, with lots of moving entries.  The deadline for submissions is April 21.  Teri Robert of My Migraine Connection and Help for Headaches is providing this opportunity to use your creative self-expression to tell the world about the Migraine life, and provide a vent for your feelings while you're at it.  Please go over to The Contest Link at My Migraine Connection to enter.  Experienced and non-experienced poets both welcome.  If you poke around over there you may find my poem - read it and tell me what you think!  Post your own and tell me you did it.  (A little bit like a scavenger hunt.)  And remember - by Monday, April 21st!

Entries will be judged by MAGNUM, the National Migraine Association and winners will be announced on April 30, in recognition of National Poetry Month.   

Poetry is the heaven of the working reason. Poetry is a divination of the spiritual in the things of sense—which expresses itself in the things of sense, and in a delight of sense.  -- Jacques Maritain, Creative Intuition in Art and Poetry, Pantheon (1953).

- Megan

Come on out and play!

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

April Headache & Migraine Disease Blog Carnival at Somebody Heal Me

I love carnivals, but with a migraineur's sensitivity to crowds and sound, it's hard to stay out in the carnival long.  Here's a very quiet carnival you can enjoy at your own pace!

The April 2008 edition of the Headache & Migraine Disease Blog Carnival is up at Somebody Heal Me.  Many thanks to Diana Lee for bringing us a lot of ideas on topics of particular interest and importance to us.

For the April 2008 carnival Diana solicited submissions on the topic of "your best basic advice for coping with migraines".   There are a lot of entries this month, varying from the intensely personal to the scientific and informative.  Look forward to lots of good reading!  Please go over to Somebody Heal Me for all the links.  I will mention a few here that I've had the chance to read. 

Sue at InnerDorothy presents My Brave and Hopeful Heart.  A moving picture of accepting reality with grace.  Teri Robert at My Migraine Connection presents Migraines & Headaches: Coping and Staying Whole with some clear and encouraging advice to help us feel in control.  Kerrie Smyres at The Daily Headache presents the hopeful Three Things Each Day, Even if That's Only Breakfast, Lunch and Dinner.  Deborah at Weathering Migraine Storms presents a moving personal picture Coping with the Pain.  Debbie Fister presents a very practical list for limiting migraines and dealing with them when they occur at Coping with Migraine and Chronic Pain posted at Down the Rabbit Hole: The Journey of a Migraineur.  Janet Geddis presents a checklist you shouldn't travel without at Migraine & Travel posted at The Migraine Girl.  Eileen Gray presents Fighting the Good Fight posted at My Life with Migraine.  Eileen inspires me with her determination.  Rena at Dealing with Headaches presents Tom Cruise: The Spirit of Migraine.  As usual, Rena made me howl. 

I'm looking forward to reading the rest!  Enjoy!

- Megan