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Archive for the ‘Communicating’ Category

Happy New Year!

February 12th, 2010

What? It’s 43 days into 2010!

I know, but I haven’t posted since January 7th; I feel like I need to catch up with you all. Greetings from snow-bound New Jersey!

I just saw that Medical Assistants.Net listed me as “One of the Top 50 Health and Wellness Blogs to Watch in 2010.” If that’s the case, I’d better get writing!

It’s been a busy month and a half for me. I have returned to my professional roots and taken a half-time job as a lawyer. I love working with you all to help you manage your Migraines, but it’s not keeping me busy full-time. I’m lucky to have a good set of skills to return to, and a great firm owner who knows me, likes my work, and is very flexible about my health needs.

I haven’t missed a day for a Migraine yet, though I have to admit I’ve had a few let-down Migraines after busy days at work. I am adjusting to a new schedule. That takes some time for a Migraineur - our systems crave regularity, and tend to freak out when we change things up on them. It took a few weeks to build enough stamina to have energy left for the other things I do. I am very glad that my preventive medication works well for me, and that my years of practice in managing my Migraines have given me the breathing and relaxation skills to get me through.

When I left the practice of law in 2000 I thought I’d never be able to go back to the pace and demands without frequent Migraines. I’m happy to report that my Migraines haven’t increased at all. Even better, I seem to have a reputation around the office as a calm person and a calming influence. That would have shocked those who knew me a few decades ago! Learning to manage Migraines, to keep my system on even keel, has left me knowing not to sweat the small stuff, and yes, most things are small stuff.

I owe all my subscribers a newsletter, and I am backed up with a couple of book reviews I want to give you. I have some stories about medication allergies for you and some great new products to link to. The Migraine Support & Coaching Group is going well, and I’d love to have more of you to talk to in the meetings! I think I’ve got my new rhythm down enough to be back and talk to you more often.

I hope your winter is going well. Let me know how you’re doing!

- Megan

Tags: health and wellness blogs, let-down Migraine, managing life with migraine, Migraine preventive medication, migraine support group
Posted in Communicating, Managing, Weblogs | Comments (5)

Fibromyalgia - a New Context

January 7th, 2010

The context in which we look at an issue can make a huge difference in our way of perceiving and interacting with the issue. When I began exploring the on-line world of support for Migraineurs and chronically ill folks, I came very early upon Teri Robert’s site, Help for Headaches, and there on the site, she had this badge:

I wondered at the time, was this really empowering, to emphasize having a disease? It is a disease, but we can have an impact on our own health by developing an awareness of our own systems, and learning to relax and calm their reactivity. I had spent some years learning that myself and that’s what I wanted to share with others.

The more I looked at it, though, the more I got Teri’s point. I realized that for the many of us who have had our condition minimized and scoffed at, the recognition that we have a disease is empowering. Our problems are real, and biologically based; our pain is real. We live with the consequences of having a hyper-reactive nervous system. For those of us who have wondered what was wrong with us, if we were crazy, if we were somehow bringing the pain upon ourselves, it is empowering to recognize that we have a disease, not just a headache! Starting from the context of a disease, we can learn about it, learn what impacts our disease for better or worse, learn to manage the disease, and to manage our life with the disease. Acceptance is the first step, and gives us a foundation to build on. It makes it possible to move forward. We can say, “Okay, I have this disease. Now what? What am I going to do about it?”

For over 15 years, since I was pregnant with my son in the fall of 1994, I have been living with fatigue, lassitude, body aches, on and off difficulty concentrating, frequent sinus infections, difficulty fighting off disease, and, in the last 10 years, ever increasing Migraines. I have gone down many paths to address these issues. With regard to the Migraines, I learned a great deal about the disease, worked with doctors to find medication and supplement combinations that helped me, and learned to practice relaxation to calm my system. My Migraine frequency is down considerably. Not so the fatigue and general pain issues, however. I have tried many different nutritional regimens, and learned a lot about what foods are most helpful to my body. I have gone great lengths to balance my hormones, and have definitely seen an improvement in my overall health and stamina through doing that. No matter what I did, however, the fatigue and pain issues did not change much.

Many people with Migraine also have Fibromyalgia, and as I got to know more people with Migraine I heard a lot about the other disease as well. My reaction for quite a while was, “Oh, I probably have that one too, but I don’t want to know about it.” It felt overwhelming to me to have to deal with another diagnosis. I practiced active avoidance. Then I saw Dr. Young at Jefferson Headache Center and he listened to me talking about my fatigue, and he pressed the Fibromyalgia tender points, and I gained a new context. Thanks, Dr. Young!

I’m not kidding with the thanks. It was just like Teri’s badge above, the pieces of a puzzle came together. I already knew that my central nervous system had some serious processing issues, well this was just another manifestation of that. In addition to having my neurons fire off and produce Migraines in reaction to certain stimuli, I have an increased reaction to pain and exertion. If I bang my elbow, the pain moves out in ripples from the point, increasing for a time like an echo in an echo chamber. If I expend more muscular energy than usual, my muscles ache for days as if I had the flu. If I am active and push myself either physically or mentally, I have a kind of fatigue that is beyond tired; it is the bone-weary exhaustion of someone who has been pushed beyond the limits of their endurance.

I have gained a lot from the context of having another disease - Fibromyalgia. I have gained a community of fellow sufferers, who care, who understand, whose wisdom and experience are available to me. I have gained the relief of knowing that I am not lazy, or losing my mind, or fundamentally bad, I am a person with a(nother) disease. And this context helps me to find solutions. I know now that stretching helps, and I can push myself to stretch when my muscles hurt and I really don’t want to. I know that my fatigue is not something to fight or to cover over with caffeine, but that it is a signal to rest. I know that getting some gentle exercise each day, and gradually increasing my exertion, will help me. I know that there will be better and worse days, but that each day can be handled, one at a time.

I haven’t posted for a while, and I’m glad to say that my new Migraine preventive is helping a great deal. My Migraine frequency is down by about 60% over the past few months. The medication also helps to damp down my anxiety and makes me very sleepy. It seems to increase my REM sleep, which is a sleep stage that Fibromyalgia often steals away. Sleeping better definitely impacts the Migraines; it also makes me less fatigued and less anxious. So at the same time that I have taken on this new diagnosis, Fibromyalgia, I have seen some of its symptoms decrease.

I’m learning this one. It’s a listening to my body, to my inner sense of myself, in a new way. Similar to the way I already listened, a familiar tune but in a different key, perhaps. The biggest gain from the new context is another level of self-acceptance. I am not a bad person trying to be good; I’m just a sick person learning to be as well as possible.

- Megan Oltman

Tags: disease management, fatigue, fibromyalgia, migraine
Posted in Communicating, Managing, Musings | Comments (0)

How do we Celebrate and Still take Care of Ourselves?

December 14th, 2009

For a number of years, my husband and I hosted a big post-Christmas holiday gathering for my extended family. This gathering had gone on at my parents’ house for many years prior. Each of the smaller nuclear families (mine, my siblings’, aunt & uncle & cousins’) would have their own Christmas Day at home, and then sometime afterwards everyone would get together for a big collective meal and gift-giving. Since we all live several hours apart, this would generally turn into a weekend-long extravaganza, with many people sleeping over for several nights. The part where we were all together generally involved 14 - 22 people.

My family gets along well, and while some readers may roll their eyes at the thought of so many relatives gathered, it has been a largely joyous occasion. When my parents sold their big house and moved on to an apartment and then a retirement community, my sister took on hosting Thanksgiving and we took Christmas. We cut the expense, noise, tumult and confusion of the gift giving by drawing lots for gifts to adults, and cut the cooking difficulties by doing some degree of pot-luck.

But… I went on hosting these events some years beyond when some family and friends were questioning my ability to do it. I have been living now for about 14 years with chronic illness, and when hosting big events, there have been predictable outcomes. I would wear myself out, either with clean-up and preparation, or with running around taking care of the guests in my home, or with cooking, or with trying to keep up with the mess generated by my husband’s enthusiastic (delicious) and whirlwind cooking.

My challenged immune system would hand me an illness or infection a majority of the time. Or my sensitive nervous system would react to the added stress and noise and confusion by hitting me with a major Migraine. Or both. I would try to compensate by planning better, systematizing everything. This would both create more work for me and make my husband crazy due to my micro-managing. And then there were the crowds themselves for gift-giving or major meals, where I never do well. My head would be spinning in no time, my anxiety level would hit the roof with the noise and over-stimulation, and I would become cranky and short with people. I would spend some part of the celebration closed up in a room by myself in pain, and inevitably the guests would have to pick up a lot of the work it took to get through the weekend.

We moved four years ago to our current home, which is about 35% smaller than our last home. We did a huge renovation on this house and part of our planning was around how to accommodate a big crowd for Christmas. The time we have been in this house, however, has been the same time period as the worst of my chronic Migraines. We hosted one Christmas two months after moving in, with many things still in boxes and the construction not quite complete. We hosted  one other year. When we put many tables together to sit down for a meal, you could not leave your place at the table without 2 or 3 other people getting up as well.  When we tried to open presents in the front room with the Christmas tree, some people had to stand in the next room and look on. Another year we tried doing an abbreviated gathering when some family members were away, only inviting a few others. I had mixed feelings and was not clear with everyone about this, and hurt the feelings of those left out.

Last year, with tears and soul searching, we bowed out of hosting. We went to my sister’s for two big holiday gatherings, and we’ll be doing it again this year. My home will stay quiet; our Christmas day will be simple and relaxed; we will be with family in a less stressful space. But… I miss having my family here. I miss sharing my life, my things, my space with the people I love. In answer to the title of this post, this is what we are doing to celebrate and still have me take care of myself. But… I’m running  2 weeks at a time without a Migraine these days, and have more energy, and I have to admit I am thinking about how to take the whole thing on again - maybe next year. We’ll see.

How do you celebrate and still take care of yourself?

- Megan

Tags: chronic illness, holidays, Migraines, self care, Stress
Posted in Communicating, Managing, Musings | Comments (1)

Expecting the Best, and Talking Straight

October 13th, 2009

I need to write to my recent, former Migraine specialist to tell him I won’t be coming back, and I’m having a hard time getting to it. I tend to dread upsetting or disappointing people, unless I am furious at them. I have nothing to be furious about with my recent doctor. I like him. He is a kind and caring man and a good doctor, and head and shoulders above the guy I saw before him who basically wouldn’t even treat me because I have medication allergies. I just was not thrilled with a number of things - how incredibly cautious he is, how very very long he wanted me to wait before changing dosages or trying new things.

He had something to say at most visits about the possible long term effects of using Migraine abortives.  I felt it was all very well and good to say maybe I shouldn’t use triptans in my 70’s, what about my unmanaged Migraines now? It was fine to say maybe I should come off a preventive after a year to see how I’d do without it, but why talk about that when we hadn’t even found an effective preventive for me yet? And I must admit the dread phrase “they’re just headaches” did pass his lips on one occasion. He seemed to think that going from around 8 - 10 Migraines a month to around 7 Migraines a month was good progress, but without really considering what the impact of those 7 Migraines is in my life.

Last month I saw Dr. Bill Young at Jefferson Headache Center, and I am thrilled to be in his care. The whole experience was what I think a Migraine appointment should be. The appointment includes an evaluation with a psychiatrist for any co-morbid emotional/psychological conditions that may be occurring. I have long wanted to have something to treat my anxiety, and my former headache doctor wanted me to go to a psychiatrist for that. I wanted to be working with someone within a headache practice, who could coordinate with my headache specialist, and perhaps find a medication that helped both conditions. That’s exactly what the doctors at Jefferson did, and I am now trying nortriptyline as a Migraine preventive which is also serving to make me less anxious than I have been in many years.

It didn’t hurt, I’m sure, that I already know and like Dr. Young. But there was much more to it than that. His level of understanding of the impact of Migraine disease, and way of asking questions to get that out, is truly skillful. I didn’t feel for one moment like I have to settle for lackluster progress just because I’m not as badly off as some.

I once wrote to a doctor who I felt had treated me really terribly, and laid out exactly why I wasn’t coming back. This is not a situation like that. I was treated well, not badly, by my recent doctor; I was treated with respect and caring. I just didn’t feel it was the best care for me, and I felt he could have gone further to understand the level of impact in my life, and to treat my Migraines more aggressively. I am glad he is where he is and if I need to go to an ER I will want to use his hospital. I guess there’s some valuable feedback I could give him, and it feels more than a little nervy to give it. I’m having a hard time being nervy.

- Megan

Tags: medical care, migraine specialist, self-advocacy
Posted in Communicating, Medicine | Comments (5)

Migraines & Driving & Driving Migraineurs Crazy

September 30th, 2009

I may have mentioned that lately I have been writing articles for Health Central’s My Migraine Connection on legal topics related to Migraine, as well as answering some of the questions that readers ask on the site. A reader came on recently and reported that her driving privileges had come under supervision by her state’s Motor Vehicle Commission (MVC) because she had self-reported that she had frequent Migraines. The MVC was considering whether to suspend her license. She was asking what to do. This sounded like a nightmare to me; I was really distressed for her, so I did some research. In the first place I discovered, not too surprisingly, that her state’s MVC had broad powers to supervise, suspend, retest or otherwise question the driving of anyone they suspected might have any kind of medical condition that could make them an unsafe driver. Researching further, I learned that just about every state has given similar powers to its MVC.

My suggestion was that she get a statement from her doctor that she knows the signs of a Migraine and does not drive when she has one, and that she consult an attorney. She came back later and reported that her MVC had taken her medical documentation, made her retake the road test, but that they had not suspended or restricted her license.

I did some more research and wrote two articles based on it, one called Migraines and Driving Don’t Mix - reviewing cases which have found people driving under the influence of pain killers (legally prescribed for Migraines) to be DUI, and other cases which found people driving with a Migraine (not with medications) were not DUI. I did stress that Migraines themselves impair us - they slow our reflexes and reaction time, interfere with cognitive function, aura obscures our vision, the pain and nausea distract us. I even went so far as to say I wouldn’t be surprised to see a case somewhere in the future where someone had a Migraine, caused an accident, hurt someone, and was held liable or criminally responsible.

In the second article, called Migraines and Our Drivers License, I reviewed the Motor Vehicle laws which set up medical review of driving privileges, trying to make people aware that we could have our licenses reviewed or suspended if Migraines impact our driving and the MVC finds out about it!

It’s been an interesting few weeks for me on the inter-tubes - I did not make myself very popular with some Migraineurs over all this! One group of readers thought I was being condescending. On one site someone ranted about how if cell-phone talking, lane-changing speeding morons should be allowed to drive, why should Migraineurs be singled out? I was called “militant” and I’m not some people’s favorite person. Several people asked me to tell them how they are supposed to get to work, function, etc…

I think I learned a lesson about my writing style, and I’m going to do my best to be more chatty and down to earth when I’m delivering hard news. I think that’s what this was - a case of kill the messenger. I’m not the Migraines & driving police (or the anything police, for that matter). We’re all going to have to use our own judgment. I just thought it was important for people to know 1) that Migraines impair us, sometimes even when we don’t feel like they do; 2) that people have been convicted of DUI even taking legally prescribed medications; and 3) that right or wrong, our condition is being scrutinized by Motor Vehicle Commissions.

Last night I dropped my son at his music lesson and went to the supermarket. Near the end of my time in the market I was very hungry and jittery, and I started to get sensitive to light, an early warning sign for me of a Migraine coming. My son was across a divided highway from me, needing to be picked up, and I had a week’s worth of groceries in a cart. So I had choices to make. I could have called my husband, and he could have come and got our son, me and the groceries. I decided to eat something and see if raising my blood sugar would hold the Migraine off. So I went through the checkout line and sat in the car eating for a while. I felt less jittery and better right away, and I made the judgment call that the Migraine was not going to hit full force in the 15 minutes it would take to get home. I picked up my son, drove home, and all was well.

Was that the right thing to do? Was I putting convenience ahead of safety? Was I being a hypocrite in light of the articles I just wrote and the position I’ve been taking? We have to make judgment calls every day with this disease. If my head had been hurting, if I was getting dizzy or confused, I would not have driven. I have called for rides, or pulled over to the side of the road in those situations before. I always try to err on the side of caution. Several people have left comments since I wrote the articles, about family members who were badly hurt driving with a Migraine.

All I’m asking is that we take this seriously, that we plan ahead, have a back-up plan, and take ourselves off the roads before we endanger ourselves and others. And I know it’s not fair, that there are lots of morons on the road who shouldn’t be driving, and all of that. It’s a very uncomfortable subject - it challenges our independence. I know. Sorry. I’m not trying to drive you crazy. Please don’t kill the messenger!

- Megan

Rearview mirror image courtesy of Dean Shareski; Steering wheel image courtesy of Tomas Fano.

Tags: driving, DUI, migraine, Migraine medication
Posted in Communicating, Current Affairs, Managing, Travel | Comments (15)

Fatigue, Fibromyalgia & Denial

September 21st, 2009

Hello friends. I’ve been quiet lately. Had a marathon summer with a lot of work and a daughter to get off to college. She is off, settled in, working hard, and having the time of her life. I flew back from three days away, moving her into her dorm, and then I attended the International Headache Congress in Philadelphia for two days, then I spent a lovely day in Manhattan with cousins from the west coast, then I spent a day working, then I went back to Philly for a first appointment at the Jefferson Headache Center, then I collapsed.

I will post about the IHC, and about my appointment at Jefferson, (both of which were great) later. What I want to talk about today is “then I collapsed” part. Well I do have to touch on the appointment at Jefferson… mostly what was discussed was my Migraines and my anxiety level. I was very happy with the care I got, the thoroughness of the history taken, the look at Migraines in the context of a whole life. I have new treatment options and new hope.

It felt like almost a side note to the exam, when the doctor pressed certain points on my body which hurt tremendously.  Once he had pressed a half dozen, I realized what he was doing - pressing the fibromyalgia tender points.  One of the diagnostic criteria for fibro is pain in at least 11 of the 18 points - well, I had a great deal of pain in 14! He asked me if I feel pain in my body on a daily basis and I said there were days when I’m achy all over, but I’m not aware of much pain in my body much of the time.

But over the next few days I couldn’t stop thinking about it. My 10 day marathon of travel, launching a daughter, conference, appointments, left me bone weary and aching. You know when you first notice something you haven’t seen before, and all of a sudden you see it all around? I had this sense of a puzzle piece clicking into place. Why do I fatigue so easily? For the last few years when I exert myself in any way, whether it’s physical exercise, mental or emotional stress, or just being on the go for a number of days in a row, afterwards my entire body aches. For days. I have become terribly sensitive to touch, where someone bumping into me actually hurts, instead of just being jarring.  My husband and I were lying on the bed talking the other day and he had his hand on my calf. His thumb was resting on my shin, and after a few minutes just the weight of that thumb began to actually hurt.

I know people with fibromyalgia, and there are plenty of Migraineurs who also have fibro. I’ve read about it, and I have wondered for some time if I might have fibro too. You’ll see in my profile that I say I have chronic fatigue, but I’ve always had some question about that diagnosis, which was more of a suspicion by my family doctor than a real confirmed diagnosis. Up to this point, though, I have avoided looking into it for myself. I don’t want to face having another chronic illness. I want to live in the illusion that my limitations will go away someday. Ha! Oh well, a girl can dream.

I will investigate this further; I will talk about it at my next headache appointment. I know there are treatment options and support available. It’s kind of silly, really, to prefer denial. Having all the symptoms I have and no name for it really isn’t better than having the symptoms with a name. Knowledge really is power. I hear that the drugs used to treat fibro are really good for treating Migraine too, and many people’s Migraines improve when their fibro is treated. We’ll see. I still kind of want to stick my head back in the sand. Except I know my neck would hurt for days afterwards.

- Megan Oltman

Logan Square fountain image courtesy of Conspiracy of Happiness; shoulder image courtesy of Barbarellaa.

Tags: denial, fatigue, fibromyalgia, fibromyalgia tender points, migraine
Posted in Communicating, Managing, Medicine | Comments (2)

Heads Together for Support

August 27th, 2009

Next week I’ll be launching something exciting here at Free my Brain. Since I started looking for help with my Migraines over five years ago, I’ve been looking for a support group, and hearing about the value of support groups.  Since I’ve been hosting the Managing Life with Migraine teleconferences on the last Sunday of every month, participants have been telling me how much they love being on the phone with other Migraineurs.  The doctors we’ve had on the teleconferences have spoken about the value of making progress with small manageable goals.  People email me all the time asking about a support group - okay - I hear you! I coach Migraineurs in managing the various aspects of their lives needed to see an improvement in their Migraine profile and quality of life.  I’ve also led coaching groups for years, and know how a group can help each other to move forward - so…

I will be leading a twice monthly Migraine Support and Coaching Group. A group of up to 12 Migraine and headache sufferers will be getting together by phone (on a secure conference line) twice a month, to exchange support, tips, ideas and encouragement, and receive coaching and training from me to improve your Migraine profile and overall well-being.  We will work with your doctor’s recommendations, finding small manageable goals you can take on that will help you make progress.  Group members will also get access to daily e-mail coaching from me and two relaxation teleclasses per month, training you to calm you nervous system and make it less vulnerable to Migraine triggers.  You will form relationships with other group members, supporting  each other in taking the actions you need to take to move forward.

Meeting face to face is wonderful, and if you have the opportunity to do that, good for you. Most people I know who have run face to face support groups find that they are hard to sustain over time. For those of us with Migraine disease and headaches, it is key to simplify our lives and cut down on stressors. Having one more thing to get out to can be difficult. You can be in the Free my Brain Migraine Support and Coaching Group from the comfort of home, on the phone.

Frankly, I can’t wait for this group experience.  Here’s what you can expect: your fellow group members will also be pursuing goals in improving their health - and you will learn from them.  Group work on relaxation exercises and developing your ability to calm your nervous systems. The supportive structure of actions to take between sessions and a partner to talk to, to keep you in motion. Your coach and the other participants cheering your results and supporting you through the challenges. A place to vent and talk about your pain and challenges with others who support you and really understand, and keep focusing you on moving forward. Come by the Migraine Support and Coaching Group page to register or learn more, or contact me with your questions. I hope you’ll join me!

- Megan

Tags: managing life with migraine, Migraine management, migraine management coaching, migraine support, support group
Posted in Communicating, Managing | Comments (0)

Keeping my Head Above Water

August 18th, 2009

Well, I wish I was literally swimming, rather than figuratively trying not to drown. I was just noticing how few posts there have been here, and that’s not like me. The good news is I’m managing not to have too many Migraines. I may be headed for one tonight - we’ll see. there’s a ferocious thunderstorm out right now. And the good news is I got away to my lovely cousins’ lovely beach-house on the LI Sound for the weekend, and didn’t bring much work with me.

I won’t try to hide that things have been tough. Although I am keeping busy writing and Migraine coaching and mediating and part-time lawyering, getting a daughter ready to start college in 3 weeks and a son to start high school at the same time, it’s a lot to juggle, and still get the rest I need and take care of myself the way I should to manage my Migraines. My husband has some free-lance work but needs a full-time job. Money is tight and I am a worrier. I just want to say hi. The worst thing is to go out of communication, and not let anyone know how you are. How I am is busy and worrying too much.

What’s my great coachly advice for you today? I’m working hard to take the coaching myself. Going out for a walk in the morning when I’d rather sleep in a little longer, because I know I need the endorphins from the exercise in my system, to help keep pain manageable. Because I know then I’ll drink less coffee and rest better, which will make me less triggerable. Because I know the exercise is good for keeping my anxiety levels down, and while I walk I do relaxation exercises that help me keep my nervous system less triggerable.

We do have some exciting new stuff coming at Free my Brain. We’ll be starting a Migraine Support and Coaching group on September 2nd. We’ll meet by telephone twice a month to work together on goals in managing our Migraines and improving our health. Get support from other Migraineurs and individualized coaching from me, at a fraction of the cost of one to one coaching. Look for the sign-up on the Home page, coming soon.

Right now we have a special for newsletter subscribers, where you can get 40% off of BREESE Relaxation Recordings. Check your email for the coupon code. If you’re not a current subscriber you can subscribe in the 6 Migraine Keys box in the upper right corner of the blog page, and you’ll find the coupon code on the Thank You page.

And though I haven’t gotten over here to write very much, I have been writing articles on Law, Migraines, Disability and Work for Health Central’s My Migraine Connection. Feel free to check them out - I wrote most recently about Work & Disability: Don’t Fall Through the Cracks.

I hope you’re keeping your heads above water too. Expect more from me soon. Let me know how you’re doing, in the meantime! Say hi, let’s keep up the communication. Okay?

- Megan

Swimming image courtesy of David Joyce; rain shower image courtesy of AlmazUK.

Tags: endorphins, exercise, managing life with migraine, relaxation techniques, support group
Posted in Communicating, Managing | Comments (3)

Staying out of the Spotlight

July 22nd, 2009

It’s very uncomfortable to suddenly have one’s vulnerabilities become center stage. I had an odd experience this week. I haven’t met many Migraineurs yet who actually want their illness to be center stage. We want to be understood, we want support and empathy and help where we need it, but not generally to be fussed over and be the center of attention because of our disease. At least, that’s my impression of the many many Migraineurs I have met! Do you agree?

A few nights ago I had a parents’ meeting to attend for a program my kids are involved in.  I’m currently on vacation in a conference center, and the space found for the parents’ meeting was the stage of the auditorium, where they had set up a circle of chairs and turned on all the stage lights.  I stepped onto the stage and in every direction there was a spotlight pointed straight into my eyes. I edged my way around for a bit, trying to find some safe angle, but the lights were just everywhere. As often happens in the face of a trigger like that, I got disoriented. I couldn’t figure out whether to stay or go. I can’t imagine what I must have looked like, staggering around the stage. My husband was there and he kind of guided me to a chair, and sat on the floor in front of me.  I bent my head down onto his back, threw the hood of my sweatshirt over my head and eyes and asked if they could turn the lights down. Someone said they were trying to dim the lights.

Now at this point my face was hidden in my husband’s back, I felt dizzy and disoriented, and I didn’t know if my voice was loud or muffled.  I was worrying about how strange I looked. The woman next to me said something sympathetic and handed me a booklet to further shade my eyes. I thanked her and said, “I’m sorry to seem so dramatic, but those lights will trigger me into a Migraine in no time flat.”

Apparently it wasn’t easy to dim the lights because the meeting started with them still on. My kind neighbor called out, “turn out those lights, we have someone with Migraine problems here!” Several people made suggestions about where else I should sit, and I answered, without picking up my head, “No, then the lights from over there are in my eyes.” My voice sounded whiny and desperate to me.  So, they turned out the lights.

This story is not about other people not understanding. I don’t know whether the people in that meeting understood or not. Whether they understoood or not, they were very caring and responsive. The whole meeting sat in the dusk so that I would not have lights in my eyes. This story is about how mortified I felt to have my vulnerability, my weakness, my Achilles heel, my Kryptonite, right up there, center stage, under the spotlights, for everyone to see.

I worried what everyone thought. Did they think I was being dramatic? Were some of the other people there sitting in judgment, annoyed at sitting in the dark, wishing I would just go away? Did I sound as whiny to others as I felt to myself?

Interestingly, I had a chance to talk about the meeting with one of the other parents the next day (it was a very good meeting, by the way), and I made some comment about having made everyone sit in the dark. She looked confused, and then said, “Oh, was it you with the hood over your head?” So obviously, I was not remembered for that! I guess I won’t go down in history here as the drama queen who made them sit in the dark because I SAID the lights would give me a Migraine!

But tell me, why is it so hard to let people see I am less than perfect?

- Megan

Tags: migraine, Migraine triggers, spotlights, vulnerability
Posted in Communicating, Musings | Comments (8)

Blog Carnival Time Again!

July 12th, 2009

It’s your hit and run blogger here, catching up to let you know about two wonderful blog carnivals.

How to Cope with Pain published the June Pain Blog Carnival about a week or so ago (told you I was catching up) with lots of great posts on living with chronic pain.  She has kindly listed teleconferences as one of the posts.

Tomorrow tune in to Somebody Heal Me for the July Headache & Migraine Disease Blog Carnival. There is no theme this time, but there are sure to be a number of great posts as usual.

Hope to talk to you again soon!

- Megan

Carnival Lights image courtesy of Gilberto Santa Rosa

Tags: blog carnival, Weblogs
Posted in Communicating, Weblogs | Comments (1)