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



Here we Go Again

January 25th, 2009

Another wasted day. Sound familiar? I had a Migraine Friday night, treated it promptly and lay low, did everything I should do. Yesterday I woke up better, though not 100%. A state of slight soreness in the left temple that is usually a characteristic of post-drome for me, but can be an incompletely aborted Migraine. It is sometimes hard to tell. Unfortunately these monsters do not follow a consistent pattern. I took it fairly easy yesterday. I slept enough, did some light activity, I did not do anything to overtax my brain or trigger another Migraine. Or so I thought.

The only thing I did “wrong” was to stay up later than I had planned – I was in bed asleep at 12:15, about an hour later than I should have. I wanted to watch a DVD with Danny and waited for him a little. He’s trying to get a project finished and I didn’t want to rush him. The movie was also a bit longer than I expected. Add it all up and it equals not good sleep hygiene. And I woke up this morning with another Migraine. Two in three days is far too many.

I always hesitate to complain. I know there are many of you out there with daily head pain and I am so blessed not to have to deal with that. I was talking to someone just yesterday about keeping perspective, and how when our seratonin is depleted by Migraine or depression we need to try to remind ourselves that we will not always feel this way, that this is not the only true reality. Could someone please come remind me of that today? Remind me that this, what I feel today, is not the only true reality! Remind me that a Sunday spent mainly in the confines of my bedroom, doing very little other than trying to keep this monster at bay, trying to treat it and limit it to today, is not the end of the world or of the progress I’ve been making. Remind me that although the sun is sinking on a painful day, that didn’t go according to my plans, that sun is coming up again tomorrow and I get another chance? Thanks!

– Megan

What am I doing today? I’m healing my brain.

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Posted in Managing, Rant | Comments (1)

My Brain Hurts!

January 23rd, 2009

Do you remember the Gumbies from Monty Python?  “My Brain Hurts!” “Oh, no, Mr. Gumby…” “I’ve got a piece of brain stuck in my head and it hurts…” My cousin and I used to quote this at each other in our teens, and laugh hysterically (Mike can do a mean Mr. Gumby impression). Little did I know that a few decades later “my brain hurts” would become such a refrain for me!

I have never seen “thinking too hard” on any list of Migraine triggers, and I’m dubious about stress. As I’ve discussed here before, stress is officially considered an exacerbating factor in Migraine, not a trigger. So I don’t know whether the experience of “sparks are about to come out of my ears” has any physiological basis or not.  Someday I may do some research and see what kind of scientific explanations there are for this phenomenon, but not today.

Today is a Friday. Fridays my brain has been working hard all week and I either give it the final push that sends it straight to Frigraine-land, or I get into an extended case of the sillies. I realize this is a tautology. I can’t tell you whether thinking too hard is a Migraine trigger because I can’t think that hard because that might trigger a Migraine. Does that make any sense? Probably not, but we’re going to have to live with it! Look I’ve been drafting an estate plan, researching corporate formation, reading up on the relaxation response, attending a mediation discussion meeting, giving a marketing talk, writing a migraine management newsletter, and trying to remember algebra. Among other things. If I think much harder my head will explode. I’m pretty sure of that.

A friend copied me on an email this week, introducing me to her disability lawyer, so that I can speak to the lawyer about her case. One of the things I am interested in is helping Migraineurs and others with invisible chronic illness to get disability income if they need it. Anyway, the friend closed the email by saying she was impressed at what a professional sounding letter she can still write, though it had given her a Migraine to do it! So I’m not the only one who finds that mental effort makes my brain hurt.

As I have gotten back into legal work lately, I have been using synapses in the ole brain-bucket that have been in disuse for a number of years. I don’t know if the Migraines I’ve had over the past decades have any effect on my cognitive functioning, or if it’s just those darned decades themselves doing the job. I’ve been encouraged to discover that even though I can’t always think on my feet and recall immediately how to solve a problem, if I leave it alone and come back to it everything seems to fall back into place. I’ve done things I haven’t done in 10 years, things I haven’t done in 20 years, and this week had to dust off some math skills I haven’t used since high school!

This is the good news, but there have been many panicked moments in between when I felt like my brain was short-circuiting, when I actually physically felt pressure mounting in my head, when I thought sparks were going to come out my ears. What is that? An over-active imagination? I don’t think so. I don’t have any studies to cite for you, but when I think my head is going to explode, I think it’s time to give the brain a break.

Right now my brain hurts. Just a little bit. I’m going to take a break after I write this, and do my relaxation breathing, then put on my boots and take a little walk in the melting snow.  I may manage to avoid a Migraine tonight. I have to say I’m encouraged by the resiliency of this organ, this thinking organ that has been ailing, and aging, and working hard, that I need to earn my living and to see me through all the years of my life to come. I also need to remember that like any other part of me, I can exercise this brain, but it also needs its rest and relaxation, it needs both to stretch and to recover.

– Megan

There’s a piece of brain stuck in my head. Thank God!

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Posted in Managing, Rant, Silliness | Comments (4)

Telling the Truth about Your Disease

January 15th, 2009

Here’s a New Year’s Resolution for you: Tell the truth about your disease this year! How many of us are walking around in a state of denial, not having told the truth to ourselves about our disease, or about what we need to do to manage it? How many of us are in a state of conflict, hurt feelings, or even losing relationships with the people in our lives who don’t know the truth about our disease either?

What do I mean by telling the truth? It may be that many of us would be better off if we didn’t have to work, or care of our families, if someone else would care for us, or pay the bills, but we just don’t live in that reality. Telling the truth doesn’t mean you have to deny your reality, or not deal with it. Quite the contrary, your reality may be that you have to work, and care for your family, but you can’t care for your home to the standards you have always had, or you can’t work the kind of hours you once expected of yourself, or you can’t micro-manage your family members but have to allow them to make mistakes and muddle through. There may be many things that you have to let slide, and telling the truth may involve reminding yourself that if you exacerbate your disease through overwork, lack of rest, not caring for yourself, then none of the other things you value will be possible. For many of us, the truth is we must put ourselves first, and that isn’t some kind of nasty self-indulgence, it’s not “No I can’t take care of my child I have to watch tv and eat these bon-bons,” it’s “I must care for my well-being or there will be none left of me to care for others.” It means put on your oxygen mask first on the air-plane or you will both be dead!

Denial is what has us clean one more thing instead of resting, or ignore the migraine twinges instead of taking the medication to treat early. Denial is what has us try to be super-women and men, has us go on hosting huge parties in order to not disappoint the family, or do whatever we believe is expected of us, at the expense of our well-being.  Denial is lying to ourselves about our own disease.

This may sound harsh, and believe me if you find yourself in a state of denial you have all my sympathy. I find myself there from time to time as well. It is human, and it will happen. The key is to practice telling the truth, to have it become a habit. You may not want to answer “How are you?” with complete truth in every situation – there may be reasons not to do that at work or in some social situations. But practice telling the truth about who you are to yourself, and to someone! Come here and tell it to me, in a comment. Sign up for the e-course The Six Keys to Manage Your Life With Migraine (in the upper right corner of the page) and tell it to me there. Register for a relaxation or support teleclass and talk about it there. Go to a Migraine Forum and talk about it. Find a friend or two you can tell. Write it in a journal, or in your own blog. But practice telling the truth.

And remember that there are people in your life who need to know the truth about your disease as well. You may want to practice telling that truth to yourself first, but your spouse or significant other, your parents or children or siblings or best friends, need to know some basics.

Here’s a link to a great letter Teri Robert wrote to share with the people in your life to help them understand Migraine disease. I can’t promise you that every person in your life will understand and support you. If you can keep the conversation about your disease and asking for their help and understanding, and keep any hurt or accusations about past actions out of it, most people are more receptive. I can promise you, though, that it is important to take this step. More hurt feelings and lost relationships come about from not trying, from failing to communicate, from wishing, hoping and expecting the other person to understand. There’s no way around communicating, scary though that may be.  If I can support you, please let me know.

– Megan

Heads together image courtesy of Vera & Jean-Christophe; conversation image courtesy of John Wigham.

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Posted in Communicating, Musings, Tips & Techniques | Comments (2)

Happy Birthday Free My Brain

January 14th, 2009

Guess What, Free my Brain from Migraine Pain is one year and one week old today! Time flies when you’re running around like a chicken without a head, as my mother would say… So I forgot my own blog-birthday last week. It has been a privilege to share with you over the past year and a bit. Please enjoy some virtual, calorie-free, serotonin-rich cake with me. I baked it in your favorite flavor!

– Megan

Many thanks to Elaine Ashton for the Giant 1st Birthday Cupcake Image!

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Posted in Musings, Silliness | Comments (1)

It’s Blog Carnival Time Again – What Keeps You Going When You’re Suffering.

January 14th, 2009

Kudos to Diana Lee who got her act together in the New Year to get the Blog Carnival out right on time – yours truly is still adjusting to a new schedule and not even getting over here to post very often, so you won’t see an entry from me in this month’s carnival! But it’s a great topic – What Keeps You Going When You’re Suffering. So pleaase head on over to Somebody Heal Me for the January edition of the Headache & Migraine Disease Blog Carnival for some great reading to keep you going. I will be heading over myself for some reads on such topics as yawning, sleeping it off, revenge, and new Migraine drugs, as well as other coping strategies! See you there!

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 the theme of What Keeps You Going When You’re Suffering.

– Megan

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Posted in Managing, Tips & Techniques, Weblogs | Comments (0)

Resolutions Big & Small – for Better Health

January 4th, 2009

Happy New Year, one and all! I have been hearing much fervent relief at the passing of 2008 and perhaps more hope than usual at the launch of 2009. Between the economic woes of the past year, the death throes of the worst American presidency in recent history, and the ongoing struggles with pain and illness of so many of my compatriots, we are all very much ready for something new. And at this time of year, we express that desire and hope through resolutions.

As a coach, I’ve always done a lot of thinking and talking about resolutions. I have mixed feelings about them. One way of looking at a resolution is that it’s a goal without an action plan. We tend to make a list of the things we know we should be doing, or that we greatly desire to do, that would improve our lives, our world, or the lives of those around us. For most of us, having made the resolution, we hope that good intentions and will-power will carry us through. Without actually taking the time to create a plan, to see what might be in the way of changing from our current actions or habits to the ones we want to develop, to anticipate hurdles and strategize a way around them, good intentions and will-power will get us where they usually get us. Maybe to February 1st. If we’re lucky.

So resolutions are great if you craft them into goals, and goals are only worth more than the paper they’re written on if they are big and inspiring but also grounded in reality, with strategies mapped out to get you from here to there. And that’s what a coach helps you do, craft the goal, make the plan, and then stick to it!

The other difference between a resolution and a goal, is that the resolution is about action we can take, and the goal is about what we hope to accomplish by it. I’ll express a goal right here:

In 2009, to see my Migraine frequency go down to under 3 per month.

This is a pretty audacious goal, from someone who had 6 – 9 Migraines per month in 2008. The other thing that’s audacious about it is that I cannot control my Migraine frequency – directly. I can only influence it. So I need to resolve:

Why am I listing all this out? Because these are the things I can actually do something about! The goal itself, directly, I can do nothing about! If I only focus there, I just get discouraged, or I waste my time in fantasy.  It’s the same for my business goals – I need to make more money, to keep paying the mortgage and send a kid to college next year. If I focus there, all I will do is panic. If I focus on the actions that I can take that will connect me to the right people, get me exposure, eventually bring me work, the goal may be obtainable.

So reach for the stars. Make big goals. Put them in front of you and don’t forget them. But for your resolutions, keep your feet on the ground. Find small concrete steps that you know you can do. And make a plan to do them. If you need some help with that plan, email me from my contact page. Make it a great 2009 – let’s see out the decade in style!

– Megan

Conch shell image courtesy of Joshua Davis, wall jump image courtesy of Alex Roberts.

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Hello there Migraineurs – I’m Still Here!

December 30th, 2008

Hello dear readers – I think this may be my the longest break between posts since I started blogging last January. I apologize for leaving you alone so long! I’m happy to report that the reason for my silence is not that I’ve been off having Migraine attacks – well, not many. I’ve had two since I last spoke to you on December 11th – that’s a great 3 weeks for me! Actually I have felt well, and I have had the opportunity to do quite a bit more paid work, which made me quite busy, and which makes our family budget very happy! And then, of course, it has been the holiday season, and even with a toned-down, taking-it-easy and not-over-doing-it kind of holiday season, I’ve been busy with that!

It’s appropriate that my last post was about balance. Remember that see-saw. Balance is always about adjusting – it shifts, and shifts again. I’m in the middle of a big shift right now. I’m finding that I have more energy to work during the day, and more energy to be with my family and friends, and care for my home, than I have had for a long time. Where’s the energy coming from? I think the Topamax is working well for me. I think the relaxation practice is working well for me, and leading some of you in relaxation sessions has reinforced my own relaxation. I also think that adding CoEnzyme Q-10 to my supplement list has helped a lot. Just having fewer Migraines makes a world of difference. I didn’t even know how much constant low level head pain I was living with – until most of it went away over the past few months.

The other side of the see-saw is that I need to still find the time for this blog, for the writing and creating that is important to me, for staying connected with the Migraine community that sustains me. I need the reminder that I am not, will never be, and don’t need to be, Superwoman, and that I still need plenty of rest and down time.

I love this week between Christmas and New Year’s when things are quiet and slow. Yes, there are celebrations and parties, and yes we’ve been to some of them. Some people go away on vacation, and though we went visiting over the weekend, for the most part we are staying put. I catch up on all sorts of paperwork, get my files in order, straighten up. For some reason the tasks I put off and hate the thought of all year become very satisfying to get finished. It’s interesting to me that this year I really get a chance for a kind of a fresh start, with a new level of control over my Migraines, with new work to do, with my desk clear and files in order to make room for new things. Then whatever those new things turn out to be, they will have to be worked into the balance. The balance will shift.

Thanks to all of you for being on this journey with me this year – it has been one of great learning and growth for me, I hope it has for you too. If I don’t talk to you again in 2008 (25 hours of it to go!) I wish you a happy and healthy new year!

– Megan

Christmas see-saw image courtesy of Tomeppy.

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Posted in Communicating, Managing, Musings | Comments (2)

Balance through the Storm – Maintaining our Health in Hard Times

December 11th, 2008

Balance is a precarious thing. Living a life in balance is a challenge for most of us in the 21st century, with the demands of careers, family, a fast-changing world, information overload. Add chronic illness into that mix and living a life in balance becomes both more crucial and more challenging.

The elements are the same, whether you are ill or well.  All of us need:

With these elements present, and balanced, in our lives, human beings can live healthy and fulfilled lives, on physical, mental, emotional and spiritual levels.  When these elements are lacking, or out of balance, we see problems arise. For someone without chronic illness, those problems may not show up right away. They may take years to manifest. For those of us with chronic illness, lack of balance triggers us into attacks, flare-ups, and deterioration of our conditions.

I have to confess I have struggled quite a bit with that balance lately. Like most of us, hard economic times have had their impact on my business, and I have tried to compensate by working harder and longer. To the extent to which this means I am more focused and get more done with my working time, it’s not a problem. The issue that I see is one that most of my clients experience as well, that of being unable to stop. I know I can’t work through lunch or on beyond 5:30 without real immediate consequences to my health. Trying to sustain that level of focus without rest breaks is one of my biggest Migraine triggers. Knowing that if I keep pushing now I may lose the whole day tomorrow is usually enough to stop me, but not always. Do you find it hard to maintain balance right now?

I picture us standing on the center of a see-saw. In calm weather, we can learn, through time, to balance pretty well on the center of that see-saw, training our muscles to adjust to little fluctuations and shifts of weight, to keep us in balance most of the time. If a big wind comes up, the muscles we have trained and the balance-ability we have developed just aren’t sufficient to the job any more. I think in the current economy we are standing on the center of a see-saw in a big gusty wind. We need to strenghten those balance muscles now more than ever! We need them more than ever!

Many of us are facing realities in which we must do more work to survive, or go back to work, or do different, more difficult work. I can’t give you a one-size-fits-all answer here, but remember you must relax, and breathe, and have balance. Don’t forget you can join us on Monday evenings for relaxation teleclasses. It won’t help if you work so hard it makes you too sick to work.

– Megan

See-saw sign image courtesy of Tyger_Lyllie/Kat; storm image courtesy of BCMom/Anna.

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Posted in Current Affairs, Managing, Musings | Comments (2)

Lots of Help for your Head this Holiday Season

December 8th, 2008

The December Headache and Migraine Disease Blog Carnival is posted today at Somebody Heal Me.  The indomitable Diana Lee has assembled another great line-up of posts for your reading pleasure, designed to help you make it through the holidays with a smile on your face and a song in your heart… in other words, the theme is “Maximizing Your Enjoyment of the Holiday Season”.

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 patients and people who blog about headaches with unique opportunities to share ideas on topics of particular interest and importance to us.

This is the one year anniversary issue of the Headache and Migraine Disease Blog Carnival, so please head on over to Somebody Heal Me for some good holiday reading!

– Megan

Hannukah image courtesy of skpy/Scott; Christmas image courtesy of Randy son of Robert; Kwanzaa image courtesy of soulchristmas.

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Posted in Managing, Weblogs | Comments (0)

Fun with Eye Exams – Bright Lights, Big Migraine

December 7th, 2008

Last week I had an eye exam. It’s not something I had ever thought was a big deal. The purpose was to check the pressure in my eyes. A particular type of glaucoma can be a side effect of Topamax, the Migraine preventive medication I am on. In addition, there is a correlation between low-tension glaucoma and Migraine. I learned this about a month ago when I first went in for the eye exam, in the early stages of a Migraine, and asked to be taken out of the bright noisy waiting room. The optometrist scolded me a bit for never having told them (in seven years as a patient) that I had Migraines. My experience has been that most doctors know very little about Migraine, and it never occurred to me to share it with them. I didn’t know it was relevant.

That first visit was a very satisfying patient experience. My optometrist was sympathetic and clearly quite knowledgeable about Migraine; she also refused to dilate me and do the full exam while I had a Migraine. She did a partial exam and I was scheduled to come back in a week. There followed a month where I had a Migraine every Wednesday. It was a good month for me, because those were the only Migraines I had. But for some reason, they kept coming on Wednesdays, and I kept rescheduling the eye exam for the next Wednesday. Finally last week I got a Migraine on Tuesday evening. It was still hanging around, slightly improved, on Wednesday, but I decided I would not cancel the appointment a fourth time. I decided to go ahead with the exam, come hell or high water. I’m not sure whether you would call what followed hell or high water. Maybe both.

First we did a visual fields test. No big deal. Lots of little lights blinking on in my visual field, and I had to press a button when I saw them. Apparently I did well. No blind spots. Then she dilated me. And shined very bright lights in my eyes. Very very bright lights. And then brighter ones. And I had to look directly into the bright lights. That is not something I have done in a very long time. I have spent several years shying away from bright lights.

When I got home I spent the evening in a dim room, blurry eyed, in sunglasses. I tried to read, work on this blog, watch tv. My Migraine came back to life with a vengeance. And hung around another 24 hours, wringing me out like a wet rag. It took days for me to feel well again. So, no, I don’t recommend getting an eye exam with a Migraine. Problem is, if I hadn’t had a Migraine I’d say the chance is pretty high I would have gotten one. The good news is I don’t have any kind of glaucoma, and I was approved to increase my medication dosage. My eyes are in good shape. It’s my brain that’s a little iffy.

– Megan

Eyeball image courtesy of Rob Bell; retina image courtesy of Eliya Selhub.

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Posted in Medicine, Musings | Comments (4)

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