Free My Brain From Migraine Pain

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!

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

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 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 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.

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.

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!

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

What are you complaining For?

Hi there – Happy Easter to all who celebrate it. I am up and walking around on a beautiful, chilly, early

spring day, with bulbs poking their green noses out of the dirt (and a few, their bright flowers.) I am headache free for the first time in 5 days and enjoying a lovely family visit. I really don’t feel in the least like complaining. But I thought about it a lot while I lay in bed this past week with sinus Martians and Migraine beasts fighting for control of my head. (They both won.)

Some folks just don’t like to complain. That preference is generally seen as virtuous, stoical (for which read, a good thing) and considerate. Hazel Reese’s autobiography, a tale of a life with chronic illness, is entitled I Will not Complain. I don’t intend to take anything away from the non-complainers, they have my reluctant admiration. You may have guessed that I myself do not often rank among their numbers. I do think there are several ways to look at, and use, the practice of complaining, or not complaining.

What are you complaining for? I mean what is the point of complaining? Actually there can be several points. The complaining we don’t like, the kind we, well, complain about, is the complaining that has no purpose other than to make us feel sorry for the complainer. Whining. Whinging. We don’t want to go visit Aunt Sue or we’re hardly friends with Bill anymore because all she/he does is whine. Taking it down a level, what we’re really objecting to is an evasion of responsibility. If only you knew how bad it was for me, you wouldn’t expect so much of me. If only you understood, you would take all these burdens from my shoulders.

There are several other reasons to complain, though, which are perfectly responsible, even virtuous. We can complain to get it off our chests, what we coaches sometimes call clearing. When I sit down to a coaching session with a client we usually spend a few minutes noticing if anything is getting in the way of our ability to be fully focused in the present – and if something is, we name it so we can put it aside. “I’m feeling sad about…, I’m upset by…, I’ve been angry about…” Those emotions keep on operating in the background and color the way we think and what we see as possible, if we don’t give them voice, whether we write them down or share them with someone who will help us clear our minds.

And then there’s complaining to get results, to make change, to change history. Most of us have seen the bumper sticker “Well-behaved women rarely make history.” Any social change worth mentioning has happened with a great deal of powerful committed complaining. Public opinion does not change without an awakening of empathy. You can awaken empathy by complaining, by making sure someone else really gets it, really understands your world. I’m thinking about the ADA (Americans with Disabilities Act), which took a great deal of powerful committed complaining. For those of us with invisible illness, with Migraine Disease and the other chronic icks that have people saying “but you don’t look sick…”, it might not be a bad idea to complain more. Not like Bill and Aunt Sue, like the ADA advocates.

Try these: “I don’t look sick, but I feel like there’s a squirrel with a chain-saw in my head” (thanks Migraine Chick!); “Oh yes, I’d be fine, if only they’d stop trying to remove my brain with a grapefruit spoon” (that was me for the last week). Or a more sincere heart to heart with the non-migraineur of your choice, asking him/her to support the AHDA (Alliance for Headache Disorders Advocacy) efforts to get a fair share of NIH funding for headache disorders!

“Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.” Margaret Mead

The Weather Report inside my head (Sinus and Migraine locked in competition)

Sniffly with a chance of coughing? Yesterday’s migraine has transitioned into today’s sinus infection. You don’t really want to hear about the nasty greenish glop going down the back of my throat! I seem to have

two major weather systems duking it out in here.

I’m going to try to make sense here, but the brain is not quite up to par today, so no promises. It’s hard to think with stuff pressing on the brain – whether that’s from the inflamed blood vessels of a migraine or from blocked up sinus cavities.

I’ve been wondering for some time about the sinus/migraine connection. In a thought-provoking article, Sinuses giving you a headache? It’s probably Migraine! Teri Robert tells us that ” nearly 9 in 10 people with sinus headache symptoms likely are suffering from Migraines,” and Migraine not only causes pain in the sinus area, but can lead to nasal congestion as well! According to a research study presented in 2004 at the 46th Annual Scientific Meeting of the American Headache Society (AHS), “real” sinus headache is only present when there is a sinus infection, which typically involves fever, lots of green or yellow mucus, and swollen lymph nodes.I have to say, as one who has clear and obvious Migraines, (pounding pain in one or both temples, with extreme light and sound sensitivity) and clear and obvious sinus infections (with the green glop of doom, swollen glands and fever), the study raises as many questions as it answers. To quote Teri Robert further:

I had one neurologist (not a headache specialist) tell me my sinus problems are probably Migraine. Without asking any further questions about my history, it sounds like he read the research, but I don’t think he was giving me useful information. I don’t generally have those suspect sinus “headaches,” I have months of recurrent infection symptoms.

This is the essential chicken and egg dilemma. Do my Migraines lead to sinus infections? Does the pressure and swelling of infection trigger Migraines? Both look likely from my own history. My internist is intrigued by the question but has no answer for me. I’ve got my hopes pinned on the headache specialist

appointment in June. What difference does it make? If I can work out a good preventive regimen for either ailment, I’d love to have it help both!

In the meantime, I try to live in the way that will best take care of both the sinuses and the Migraine brain, which for me involves avoiding dairy, keeping my supplements up (including magnesium and B for the head and C and zinc for the immune system), eating in a way that takes care of my gut (high fiber, not a lot of processed foods, using a pro-biotic supplement), keeping my nasal passages moist with a neti pot and saline spray, and using relaxation to keep the ole brain calm cool and collected (more or less).

Boy, that’s a Real Migraine!

a. Europe’s $1.50 Headache Is Italy’s Migraine(Headline in Forbes.com today, article by Vidya Ram – the article is about the rising euro and its effect on Italian exporters.)

b. SOUTHERN AFRICA: Integration and the migrant migraine (Headline from IRIN, posted by Reuters today – the article is about how the flow of Zimbabwean migrants to neighboring countries is hindering the goal of Southern African regional integration.)

c. Saturday – slept badly Friday night, migraine by afternoon, pain at level 3 on left, moderate nausea, picked up boys from movies, pain at level 8 on return, both sides now, extreme light sensitivity, took Imitrex 7 pm, lay down, room dark. Can’t read or look at computer screen. Vomiting on & off 3 hours, pain varied from 8 to 5, went to sleep around 10. Pain at a 3 on waking, tired, achy, depressed all day.

Okay, are you ready? Which one is the real migraine? You picked c, right? Good job! You get a gold star. a and b are known as frustrations, hassles, problems or perhaps international crises. They are not migraines.

Am I being too much of a stickler here? Maybe. Maybe not. There’s a lot of real news about migraine in the news these days. Partly thanks to the New York Times Migraine Blog, or maybe our chance for some recognition and understanding has finally come. But most of us get annoyed by the trivialization of a very real and debilitating illness.

Interestingly, today the first 15 pages of results of a Google search on migraine are actually some kind of content about migraines. This was not so a few months ago, when I tried the same search and came up with many references like the two above, and one about a hockey team’s poor performance being a “migraine” for the team manager.

I am willing to ascribe most of this to ignorance, not evil intention. I think it’s become a fashion to refer to a big hassle as a “migraine” instead of just a “headache.” However, it does distract public attention from the fact that this is a disease. A fact that most people still don’t know.

Is it okay to say “what a headache?” If you’ve ever had a headache, you know what that means. Most people have had a headache, and know that tension can lead to one. So we call things that make us tense or upset “a headache.” People also say “I just about had a stroke!” or “I just about had a heart attack!” I’ve been guilty of that myself. After a stroke hit someone very near and dear to me, I didn’t feel like joking around about it any more.

This is in the category of being responsible for what comes out of our mouths. We create our world through language. We shape what is possible for ourselves and others. You only have to listen to political double-speak to understand that. Whoever gets to frame the issues tends to win the debate.

And so, maybe we can call a hassle a hassle and a crisis a crisis? It seems like in our culture we always have to go one better, to make things more extreme. If 10 years ago we called a hassle a headache, today we have to call it a migraine. What will we call it 10 years from now? A brain tumor?

It’s Not Me, it’s the Migraine Talking

I have been back on track with practicing my relaxation routine this past week and I was going to write you a nice inspiring post about that. I was on a 13 day migraine free run and feeling pretty good about it. Yesterday the beast sank its claws in again and hasn’t let go yet. I feel like all the inspiration has been sucked right out of me. But that’s just the migraine talking.

I resent the arrival of a migraine on the weekend, stealing my weekend time away. On the other had there’s less anxiety with a weekend migraine as I am not missing work – not missing things crucial to my livelihood. Just missing my down time, my marriage time, my family time, my fun time, my get the house in order time. Well, I guess I’m not missing down time, actually, because I am down!

Lying around. Watching tv, reading when I can stand the light, hanging out on line, drinking lots of cups of tea my sweetie brings, enjoying the comfort of my bed, receiving periodic visits from the family, with hugs and snippets of conversation. It’s not really all that bad, for down time. That was me talking.

Then I can’t stand the inactivity any more. I decide to sit up and be okay, and I start folding laundry or some such ridiculously strenuous task. The pounding returns and the nausea starts back up. Danny comes in to watch a movie with me and we try to talk about plans for next weekend, and it strikes me what I am missing, how uncertain my life is. And I start to cry. Knowing that crying can make the migraine worse, I try to stop myself. I remember how accepting I have been in the past month, and I start beating myself up for not being accepting right now. That’s the migraine talking!

Serotonin levels drop during migraine attack. I imagine the migraine slurping up my serotonin. So of

course I’m going to feel unhappy. Aside from the pain itself, which is not happiness inducing, it’s hard to feel happy without serotonin. So I use what I can to comfort myself – hugs and tea and toast with honey, dark chocolate (when the stomach can stand it) and gentle movies, puzzles and pillows and good books. If I can concentrate at all, I come and write to you here, and that helps me remember who I am, that I am not the migraine, that it is what it is, that this too shall pass.

Oh, yes that’s Arizona again – Spider Woman Rock in Canyon de Chelly. I didn’t have a migraine for that part. Down below is New Mexico – the sunset over Albuquerque from Sandia Peak.

Happy Birthday!

If my topic today isn’t (mostly) about migraines, I won’t be the first migraineur-blogger to write off topic. I wrote last week about acknowledging and appreciating the people in our lives who support us. So I’m doing

some more of that today:

Today is my sweetheart’s birthday – Happy Birthday Danny! Here are some roses for you!

You pick me up when I’m down, you keep me honest and focused and give me back my perspective when I lose it. You care for me when I’m not well, you make me laugh, you make me think. You excite me, you calm me down. You awe me with your brilliance, you nurture me with great food, great touch and admiration. I’ve known you my whole life, you’ve always been a part of me, even when I didn’t know it yet. And even though for 5 days every year I call you the old geezer, I think it was very gracious of you to come into the world 5 days before me and break a path for me. But then you always were a gentleman.

Do I have migraines, or do they have me?

I work with people with chronic conditions, and we talk about this – do I have the disease, or does the disease have me? I also work with small business owners and I ask them – “do you have the business, or does the business have you?” Maybe having a business is a form of chronic disease. If so I’ve got another one to add to my list! But I digress…

My buddies on the mymigraineconnection forum were having a discussion today about

apologizing for the effects of our migraines. I think we’re in agreement that there are a couple of meanings of the word “sorry.” One is to apologize, but another is to say “I feel for you” or “I am sad that you feel that way.” When someone experiences the death of a loved one we say “I am sorry for your loss,” but we don’t mean that we are feeling personally responsible for the death. I think English needs another word for sorry!

The famous quote from Erich Segal’s Love Story is “Love means never having to say you’re sorry.” I’ve always had a hard time with that line, but I don’t think Segal meant that we can do whatever we like to those we love without acknowledgement. I think he meant that forgiveness is part of loving someone.

And even if we can expect forgiveness from those we love, love still needs to be nurtured and watered and fed, like any living thing, or it can wither. I think part of how we nurture and feed those we love is to acknowledge the pain they feel for our pain, the huge help they are for us, the disappointment, inconvenience and extra work our disease causes. So if I say “I’m sorry” when my husband brings me up a meal on a tray, or when I have to ask my son not to play drums right now, or I can’t take my daughter out shopping, what I really mean is “this disease stinks. I wish I didn’t have it and I wish I didn’t have to ask you these things.”

In Emotional Intelligence author Daniel Goleman talks about the ability to stand back from our emotions

and observe them. This ability is what gives us some perspective, some emotional intelligence – when we can “count to 10” instead of reacting right away, we have some power over what we feel. So to tie this in with feeling sorry, maybe when we say “I’m sorry,” when someone brings us a glass of water, we’re separating ourselves from the migraine disease – we’re saying “I am not my disease. I have migraines but they don’t have me. I wish I didn’t have them – but there is a me here, completely separate from the disease, who regrets the trouble and sorrow the disease brings.”

My heart goes out to those in constant pain, in part because of this – the more pain, the more constant, the harder it is to keep that healthy perspective. When I can remember that I am not the migraine, the migraine doesn’t have me, that’s when I can take back my life.

With enormous love and gratitude for Danny, Rachel, Adam, Mom & Dad, my siblings and in-laws and the many other family members and friends who bring me glasses of water, literal and figurative.

Lunch tray courtesy of Wordridden/Jessica
Glass of water courtesy of Venkane/Nevena

Free My Brain From Migraine Pain

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