scars, pain and understanding

I had an interesting conversation with a friend, B, tonight. Without sharing too many of her personal details, she's in the middle of seeking a diagnosis for abdominal pain, originally related to ovarian cysts and now possibly an infection.

I've been friends with B since college, though we haven't necessarily been close. Last year, during a trip back east, I opened up to her some about my daily struggles. She had no idea I had continual head pain and live such a regimented life. At the time, I was still very sick - my head pain was never below a 4/10 and my Migraines turned severe (7+) several times a week. Add the melange of daily symptoms, and I was in very sad shape.

B remembered that conversation from last year, so she sought me out tonight to share her story and her struggles. It was very touching and heart-wrenching at the same time. It seems that much of her trouble is at least partially due to being brushed off by her doctors (a familiar story to many of us).

Probably the most amazing part of the conversation is how many of her words mirrored my very same feelings from last year. She's dealing with a lot of anger right now, reminding me of my own anger I'm finally letting go of. I remember how overwhelming the anger would be sometimes, borne out of an inescapable frustration with my debilitating pain. I was angry with everyone around me, especially those without chronic pain who couldn't possibly understand what I was going through. Mostly I was angry that there was no "fix" for my chronic pain, and I could only hope to manage it for the rest of my life.

It's only in the last few months that things have begun to turn around. My treatment regimen, coupled with a lot less stress, is finally working. Getting rid of three major stressors in my life (found a part-time job, finished moving to our new apartment and sold my car) has significantly improved my health. I'm still not where I want to be, but I'm much closer than I was last fall.

I couldn't really give B any answers, but I could offer her some hope and support. I pointed her toward a number of resources on the web. I shared some more of my story that I hadn't told her before. But, most importantly, I offered her compassion and understanding, something I've found in abundance here in the online chronic illness community.

My talk with B was a strong reminder that at any time, any one of us can cross from the world of the healthy into that of the sick. But it's also a reminder that we can manage to find our way back among the healthy, even if we bear the scars of the journey.


Side note: if any of you have suggestions for resources for female reproductive disorders and related pain, please leave them here in the comments so I can pass them along to B.


Be well,
MJ

your help requested: Team Eye and Ear

I'll be going off the topic of Migraines today to raise awareness for another cause close to my heart.

Two of my family members are running the Boston Marathon this spring. They are fundraising for Team Eye and Ear, the charity team for Massachusetts Eye and Ear. So far, they've done an excellent job of raising money toward their goal, but I'm asking all of you dear readers to consider a donation to their team.

Why did they pick Team Eye and Ear? On their fundraising page, they explain:

Monica had sudden vision loss as a teenager caused by a degenerative cornea condition. Her doctor at the time told her she would eventually lose her sight in one eye and would need a cornea transplant. After moving to Massachusetts in 2001, Monica came to Mass. Eye and Ear to get a second opinion and transfer her care to our doctors. Her doctors and the staff at Mass. Eye and Ear gave her hope, telling her that she would not necessarily lose her vision and that there were things she could do to help prevent it. Monica explains, “Going to a world class institution and seeing the doctors who are really aware of and involved with cutting-edge research has made such a difference in the care I’ve received, and I want the opportunity to give back by raising funds to help continue that research.”

Please take a minute to check out their fundraising page and consider donating. Even $5 can make a difference!

Thanks, everyone!

More about Massachusetts Eye and Ear Infirmary.
More about the Boston Marathon.
Donate here.


Be well,
MJ

looking behind and looking ahead

Well, the holidays seem to have gotten the better of me, as I haven't posted since Thanksgiving. My humble apologies to all of my dear readers out there.

To be honest, I'm not even sure what happened in the past month. The holidays were coming up, sure, but it's not like I was doing last-minute Christmas shopping... or any shopping. DBF and I are still among the ranks of the unemployed, so our gifts to others were very minimal this year.

Our holidays were filled with love, all the same. We spent five days with my family, filled with snow and quiet enjoyment of each others' company. DBF shared some of the cooking duties with my family and left some recipes behind for my mom. It was a nice and recuperative time.

We took the train 500 miles south to visit DBF's family and spend the remaining five days of our trip back east. While this part of our trip was anything but calm, it was a wonderful chance to see family that we don't normally see. Even though it's been two years since I've seen (met) many of them, they hugged and kissed me like I was one of their own. And this year I felt like I was.

There was a lot of stress surrounding Christmas this year - a lot of traveling, including flying; trying to find food safe for me to eat; tight finances and few presents to give out - but it is one of the best I have had in a long time. I'm left with warm feelings of gratitude and fulfillment, like I spent a cold winter's day by the fire with a good book and fuzzy blanket. This is the first Christmas DBF and I have spent together, and it just felt right.

Unfortunately, I caught a pretty nasty cold while we were away, and by the time we got home, I was in poor shape. I very rarely get sick - it's been a couple years, in fact - so I got pretty slammed. Plus, we started moving to our new apartment the week we got back, so I'm still searching for some sort of routine in my life again.

But, I actually feel rather optimistic for 2009. And that is a good feeling.

At the beginning of last year, I wrote:

I don't believe in new year's resolutions, but I am rededicating myself to my healthcare. I have my first appointment with a new headache specialist next week. I am willing to do what it takes to find a treatment regimen that will get my migraines under better control.

I am looking back toward 2007 as a year of growth for me. I've learned much more about my disease, and have started keeping a headache diary to better understand my patterns and symptoms. At least now I feel like I'm doing something toward getting better. I am looking forward to 2008 as a year to continue to learn about my disease, but also to take my life back piece by piece.

2008 certainly was not an easy year, but I feel like I did achieve what I set out to do: continue to learn about my disease and take my life back, piece by piece. I did lose ground to the Migraine beastie, when I had to resign from my board position with the AIA. But I feel I'm better able to cope with my illness than I was a year ago.

Something else I wrote about a year ago:

I think the time has come to make the jump and completely eliminate gluten, dairy and sugar. All three intolerances have a strong genetic run in my family (eggs, too). I think it's worth it to give this diet an honest try. If nothing else, I may lose some weight, which would not be a bad thing.

My problem these days is it seems like anything and everything will trigger a migraine. Stackable food triggers (or suspected triggers) currently include: MSG, sugar, soy sauce, salt, wheat, dairy. There are others I can't think of right now. I've already made the switch to organic meat (which tastes a lot better anyway).

I think that I just need to jump in with both feet and give this diet a real chance. I have migraine pain every single day. If cutting out these foods will cut down my head pain even a little, it's worth it to me right now.

I've now been gluten-free for a year now. The full diet eliminates gluten, cow dairy, MSG, preservatives, artificial sweeteners and caffeine. I've also limited my intake of alcohol, sugar, salt, eggs, nitrites/nitrates and non-cow dairy. I eat organic vegetables and meat as much as possible. I'm proud to say that this diet has massively improved my IBS and cut out my (few) Migraine food triggers (MSG, some wines and artificial sweeteners). I've also lost about 45 pounds, and am a much healthier size 12.

I certainly didn't start the diet with the intention of losing weight, but I've found a much healthier self. I still have a long way to go before my Migraines and IBS are well controlled, but I've actually made a lot of progress in the past 12 months. 2008 was a hard year for many reasons, but it was also a year with many successes, and I need to remember that.

So, here's to 2009. I still don't make new year's resolutions, but I will start out 2009 with much the same intention as 2008: I want to continue to learn as much as possible about Migraine disease, and take the best care of myself that I can.

Happy new year, all.


Be well,
MJ

engage with grace

The end-of-year holidays are traditionally a time for us to give thanks, and enjoy the company of our friends and family. This year, I'm joining health bloggers around the world to promote the One Slide Project from Engage with Grace.

If you're like me, you're not clear on the end-of-life wishes of your loved ones. Maybe you're not even sure of your own wishes. Engage with Grace is encouraging people everywhere to initiate this very important conversation at a time of year when loved ones are at the forefront of our minds. The following was written by Alexandra Drane and the Engage with Grace team. To learn more, please visit www.engagewithgrace.org.

(Thanks to Laurie at A Chronic Dose for bringing this to my attention.)

.::.

Engage with Grace: The One Slide project

We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.

This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones know exactly or have a good idea of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.

But our end of life experiences are about a lot more than statistics. They're about all of us. So the first thing we need to do is start talking.

Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we're asking people to share this One Slide wherever and whenever they can ... at a presentation, at dinner, at their book club. Just One Slide, just five questions.

Let's start a global discussion that, until now, most of us haven't had.

Here is what we are asking you: Download The One Slide and share it at any opportunity with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.

Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them.

Just One Slide, just one goal. Think of the enormous difference we can make together.

woman and work: a follow-up

Today's post is a bit more personal than most, if you'll bear with me.

This past Thursday, November 6, turned out to be a much more unusual day than I expected. It started out like any other, DBF and I walking to work together. About two hours after we got in, DBF called me to tell me had been laid off. And within the hour, I met with my team lead and an HR rep to find out I also would be let go. So DBF and I packed up our desks, gave some hugs goodbye to our coworkers, and went home jobless - along with 70 other people from our company.

Unfortunately, an economy in bad shape means that the architecture industry takes a bad hit. No one wants to build when money is tight. We were fortunate that we were both provided with a decent severance package, and had set aside some money for a downpayment on a house. The reason we were let go was purely economic, not performance-related. But it still hurts, and we're still quite upset about it. We didn't have any notice, so we had no idea what we were in for on Thursday morning.

I am not sad to see the end of this week. Keep your fingers crossed for us that we both find decent jobs quickly.

Be well,
MJ

recovery

Much like National Headache Awareness Week back in June, I've been extra aware of my head pain this week, which happens to be both Invisible Chronic Illness Awareness Week and Migraine Awareness Week (in the UK). And I've spent this noteworthy week being rather ill, between a rather tall stack of Migraine triggers and some medical issues.

First, my family (Mom and sister) came to visit me. They live in Massachusetts, so it's an all-too-rare treat to have them come visit. Like me, they are both Migraineurs, so they "get it" about being sick and in pain, though neither of them have suffered with the severity of Migraine that I have.

My sister, mom and I went to Port Townsend for the long Labor Day weekend, to visit a pretty Victorian town none of us have seen, and to drive up to Hurricane Ridge at Olympic National Park. We drove up on Friday afternoon, returning on Monday. While it was a very laid-back trip and we cooked in the kitchen in our hotel room, it was still traveling, which always stresses out my body.

Tuesday through Friday, I was back at work, dealing with the typical stack of work triggers: fluorescent lighting, computer screen, food smells and noise. Being tired from the long weekend away made me more susceptible to my triggers, though I had a few days of recuperation before another long weekend. My mom spent the week traveling again, while my sister left on Monday night. In addition, the Lyrica I had been trialing as preventive #7 began giving me increasingly intolerable side effects, so with Dr E's okay I discontinued it on Friday, after several weeks of side effects.

Friday afternoon, DBF, my mom and I looked at a house before driving to Lake Chelan. This was more of a rush trip involving a lot of driving. By the time I got home Sunday night, I was completely worn out and dreading another week of work.

During my family's visit and our various trips around Washington state, the effectiveness of the Botox treatment I had back in June had been wearing off, meaning more pain and more Migraine symptoms. Luckily, Monday afternoon was my second round of Botox injections, and I was hoping for relief similar to my first treatment.

Wrong! This time, the injections hurt much more. Monday night, I felt awful. Bad enough that I called my doctor on Tuesday morning to report in about my side effects. Dr E called back quickly, and after asking me a few questions determined that I may be having a mild allergic reaction to the Botox. Great! He had prescribed a new preventive for me to try, Inderal, but suggested I hold off on it until I felt completely back to normal.

As if that stack of triggers and side effects wasn't high enough, I had a stressful week at work. My company laid off 20 employees on Tuesday, which amounts to about 5% of our firm. While we were very fortunate that my company was (and still is) financially stable, these employees were not laid off for performance issues. Our senior partners handled it well, holding four separate open discussions with the various teams and entire firm, inviting questions from everyone. They recognized how stressful the layoffs would be for all of us, but the shock of losing good employees (and friends) was difficult on everyone.

And because this stack wasn't quite tall enough yet, I worked 9-hour days on Tuesday, Wednesday and Thursday to try to make up for the work time I missed on Friday and Monday. So now, I'm in recovery mode.

What I need to remember in facing these types of life situations is that, first and foremost, I need to take care of myself. In my healthier years, I could handle the sort of stress that travel and work would put on my body without much trouble. But now that my Migraines are out of control again and I spend all of my time being sick, I need to take extra good care of myself during stressful periods. I've really done a number on myself, and I'm hoping that this weekend is enough to recover (though it may well not be).

I have been very frustrated and upset this week. Dealing with another failed preventive and an allergic reaction are difficult enough in my day-to-day life, but adding all this stress on top of it just threw my body for a loop. I had to leave work early today, after spending much of the day in a painful haze, to come home and nap. DBF woke me up for dinner, and after eating, I'm starting to feel less like road kill. I still feel incredibly dizzy, nauseous, achy (both Migraine- and Botox-related) and exhausted.

I had some plans this weekend, to go look at houses and run some errands. In all likelihood, I will have to postpone these plans and spend the weekend on the couch, trying to catch up on sleep and renew my energy reserves.

Megan over at Free My Brain wrote this week about her Migraines being invisible to herself. After these two weeks of overstressing my body and not taking enough recovery time, I find myself in the same boat. Acceptance of illness is a difficult path, and I find myself repeatedly learning the same lessons.

So, for the final few days of Invisible Chronic Illness Awareness Week, I plan to be much more aware of my own illness, and treat myself with the patience and compassion I deserve.

Be well,
MJ

choices, decisions and resentment

Having such chronic migraines means, at this point in my life, I'm living with a lot of resentment.

I've talked before about the resentment I feel for my disease itself. Migraines have stolen much from me, and I resent that this disease has taken up so much space in my life. Usually I can use this resentment and anger to keep me going on my path toward getting better.

But I find other resentment in my life as well, which I don't talk about much. In the spirit of honesty and sharing with my readers, however, I'll talk about it now. And that is the resentment I feel toward other people. Before you close your browser window in disgust, please do read on.

It's not that I resent specific people. It's more that I resent (and envy) the carelessness of good health. I see it all the time, the ease with which many others live their lives, blissfully ignorant of the continual attentiveness that is chronic illness.

Most of my energy during the day goes to thinking about and coping with the little challenges I come across. I'll reference here the Spoon Theory, written by Christine Miserandino, the founder of But You Don't Look Sick?, a wonderful site for anyone with invisible illness. Anyone with chronic illness knows the very real challenge of living within your limitations, learning to conserve and use your energy (spoons) wisely. I've found that just to conserve my spoons, or to prevent spending them too quickly, in itself takes a lot of spoons.

This is something that is very difficult for people without chronic illness to understand. I don't (usually) resent them for it, but I do envy the decisions they don't have to make.

A friend of mine once described it like this:

On choice:

Most people simply make their choices and leave the momentous decisions for things like buying a house. It sounds to me like the difference is that simple choices become decisions for you. So in that sense you don't get choices. You're forced to make decisions, and the weight of each decision carries with it a stress load quite unlike that of mere choices. And since other folks don't have that load, they really aren't likely to get how the process affects every other aspect of life. "Well, why can't you just...?" You can never "just..." anything.

And that is the essence of this second type of resentment. I can never "just" anything.

A perfect example: my team is having a BBQ tomorrow after work. Deciding whether or not DBF and I will go has been putting a lot of stress on me. Do I have enough spoons left from the week to do this extra activity on Friday? Will I have the energy to socialize? What will I do about food? I can't eat any of the food being served (hamburger, hot dog, veggie burger) because of my strict diet. Will I have a good time if I go? What won't I be able to do this weekend if I decide to go to the BBQ? How will this affect my work next week - will I have enough energy to make it through the full 40 hours? Questions like this have been buzzing in my head all week. There's no easy answer. I want to go, but I don't know if the cost to me will be worth it. (And I'm not even talking about the $10/person contribution to the food/beer budget.)

Most of the people on my team have not had to face these questions. If I was healthy, it would "just" be a matter of, is my schedule clear? Do I want to go? Yes + yes = go to BBQ.

.::.

Next Wednesday is my 25th birthday, the third birthday I'll have during this current bad migraine cycle. Never did I think I would be sick for so long. I'm trying not to be depressed about it. I will get to spend it with DBF, a wonderful, caring man who has been through so much with me on this confusing and difficult journey. And he's buying me ice cream cake. It's completely against my diet, but I'm not willing to skip it completely. I've had to give up so much already that I just need a slice of normalcy.

Have a good weekend, everyone.


Be well,
MJ

grieving my past life

I'm going to say it right now: I resent migraine disease, and everything it has taken away from my life.

I graduated college two years ago, a carefree, optimistic, idealistic young woman, about to embark on a promising career in architecture. The economy at that time was much better than it is now, and the job market for new intern architects was excellent. I had my pick of where to work, so I chose a firm whose mission and vision seemed to echo my own goals. I packed up and moved clear across the country, taking a chance on a new life. What better time to do it?

My first neuro, who saw me all through college while I was on Topamax the first time, suggested I try titrating off to "see how I would do". The tapering schedule he gave me meant that I was finished with the Topa before I even got to the West Coast. Fitting, I thought. A new life, no longer a slave to the little Topa pill I hated so.

An immature view, I realize now. Now I know the necessity of good preventive medication. When I was in college, I knew nothing about chronic daily headache or about migraine disease. I just knew that my head hurt all the time, and taking 50 mg of Topa every day meant my head only bothered me about twice a semester, but it also meant I couldn't consume alcohol with the same carefree attitude of my friends.

But what I realize now, what I have realized over and over again in the two years since I came off the Topa, is that that stupid pill that I hated so much is what allowed me to finish college on time, with an honors diploma and double-minor. It gave me a life I wouldn't have had otherwise. There's no guarantee, of course, that staying on the Topa would have meant it would have kept working for me - and that's what I tell myself every day. Because now Topa doesn't do anything for me other than randomly give me new side effects and make me depressed if I take too much of it. I thought at one point that it may have been working, but I no longer have that delusion.

Within a month of titrating off the Topa, the ambiguous dizziness and nausea, that I now recognize as my primary symptoms of CDH, were back. I blamed this sickness on everything: homesickness, adjusting to my new life, allergies, an ongoing fight with my father. It took until December, six months later, to schedule an appointment with my PCP. She treated me for a sinus infection; those antibiotics did nothing, of course, to actually fix my head. By February 2007 I was referred to a neurologist.

Nine months I had already given to this disease, convincing myself it had to be something else. And during that time, I was trying to establish a new life for myself. The weak social ties I had started to forge over my first summer here had already fizzled out. I just didn't feel well enough to go out and drink on weekends. I didn't have enough energy to make plans with people, or join community groups. I did a brief stint, playing clarinet with a local university band, but after a year of that, I simply didn't have the energy anymore.

From February until now has been one preventive after another, in various combinations. Topamax, nortriptyline, cyproheptadine, verapamil, gabapentin, Topamax again. Meanwhile, my CDH and frequent migraines turned into weekly migraines, then daily migraines, and now an ongoing migraine since November that's only becoming harder and harder to treat.

It's not that I resent the time I've spent trying to treat my migraines. I understand the trial-and-error nature of migraine treatment. I resent everything I've had to give up.

I no longer can go shopping or run errands for the most part. Fluorescent lights are a huge trigger for me. Not only do they aggravate my migraine, but certain tints of fluorescents - the kind most retail stores use - trigger diarrhea within 15 minutes of going into a store. Not so conducive to shopping.

I no longer go to see movies in the movie theatre. Seeing movies, especially action movies, in the theatre is both one of my favorite pastimes and biggest triggers. Seeing Pirates 3 triggered one of the first acephalgic migraines that I identified as such.

I no longer drive, except on very rare occasions when I absolutely can't avoid it. I don't feel safe on the road, since I know my concentration is impacted from this ongoing migraine.

I no longer drink. Alcohol seems to be a stackable trigger. It interacts with almost every medication I take anyway.

I no longer eat gluten, dairy, caffeine, MSG, preservatives, artificial sweeteners, high fructose corn syrup, and have severely reduced my sugar and salt intake. MSG and artificial sweeteners are confirmed migraine triggers. The rest do bad things to my digestion so I've cut them out.

I hardly ever eat out, because of my strict diet and because I hardly ever feel up to it.

I no longer do my computer-based design work. Computer screens are a migraine trigger. Working in front of a computer at work is all I can tolerate most days.

I no longer use a desktop computer at home. This doesn't sound like it would be a big deal, but my desktop is much more suited to do most design work. Since I can't do it anyway, DBF and I decided to buy a new laptop for me to use in the living room.

I no longer go to the library. This one makes me very upset. But our gorgeous library has fluorescent lighting, so I can only stop by long enough to pick up books I have on hold. No more Saturday afternoons spent reading there.

I have almost no social life to speak of. Since my migraines have gotten progressively worse as I've tried to start a new life here, it's been hard to form new social ties. DBF and I are going to make more of an effort to have people over this summer, but we'll see if that actually pans out.

But most of all, I no longer just "do" things without considering their consequences. A coworker invites me out to lunch; is there something at the restaurant I can eat? What kind of lighting does the restaurant have? I have to buy a new pair of jeans; do I order them online and risk them not fitting or do I try to buy them in a store and risk fluorescent lighting? We're out of cat food; I have to ask DBF to go buy some - I can't drive to the store and I can't go in there once I've gotten there.

There is a lot about my life that is positive. DBF, for one. A girl could not ask for a more supportive boyfriend. Without him, there is no doubt I wouldn't have been able to make it this far. I would have already had to move back to the East Coast to ask my family for help.

My job, for another. It's been a huge struggle to keep a full-time schedule with my health in such bad shape, but my job has excellent health insurance and benefits, not to mention is a great way to start my career. My firm and my boss have been pretty understanding of my situation and have given me a lot of leeway.

And of course, there's my family. My mom and sister are both migraineurs, and while their migraines have never been as severe as mine, they understand my pain.

Last but not least is my doctor. Without a good doctor I surely would have lost hope by now. I've just started seeing him, but I feel more confident he can help me than the last doc I saw.

It is just so hard to nurture hope in the face of so much failure. Five preventives I've trialed; all have failed. While there are many more to try, it takes a lot of courage to keep trying. And while I've been trying, my migraines have only gotten worse.

And more and more, I find it hard to suppress the question in the back of my mind: what if this migraine never breaks? What if I am always stuck with this pain?

Today I don't have any answers, or any insight to wrap this post up with. So I'll leave you, instead, with a quote from a book I recently finished:

"What will you do, if it does not turn out how you expect?"
"I do not know. Nor shall I worry about it until it happens. I still have an action left to take; until I have exhausted it, I shall not despair." - Robin Hobb, Assassin's Quest

Be well,
MJ

shred of normalcy

If I've been a bit absent from the blogging world, it's because I was traveling last week. I spent most of last week at an architecture convention in Boston, followed by a weekend in Virginia for a friends' wedding. Interspersed in the trip was time with my family, DBF's family and friends from college.

In other words, a very busy trip, and one many migraineurs would dread.

I had been looking forward to this trip for months, because the conference promised to be a good one and because I would get to see many family and friends I don't spend much time with. (The price of picking up and moving clear across the country.) But, as the trip loomed closer, I could see the potential triggers stacking, and no easy way to avoid them: the flights, including a red-eye to get to Boston; irregular sleeping and eating habits; fluorescent lighting; long, full days with much more activity than I'm used to; different weather; brighter sunlight than we have in the Pacific Northwest; more flying; long driving trips. The list went on and on. Add to that the stress over trying to keep my strict gluten-free/dairy-free diet and I just wanted to cancel the trip.

But, because of personal and professional obligations, I packed up my bags, kissed DBF goodbye (with promises to see him in Virginia), and off I went. And I survived the trip, though I'm not sure about the cost to my body.

The conference was wonderful, and I made some very valuable professional contacts while I was there. Not to mention, I learned a lot. The days were long, though, very long, and by the end of it I was exhausted. The first two days I went on two walking tours, which I probably would have bagged if I hadn't paid for them upfront. (No refunds.) These were followed by many seminars in a very cold convention center under fluorescent lighting. A recipe for disaster. I skipped about half of the sessions I intended to go to, but I also managed to skip the guilt. Even when I had to cancel a dinner with the principals of my firm because I felt so sick.

Going to the wedding I thought would do me in, but taking it very easy on myself all week meant I still had some energy to coast through the weekend. It was a huge relief to get home nonetheless, away from the expectations of friends and family I don't get to see as often as I would like. My family "gets it" better than I could hope for, since both my mom and sister are migraineurs. DBF's parents try to be understanding, and I never feel pressured by them. But it becomes hard to say no to friends I haven't seen in years, especially when they don't understand the "headaches" I mysteriously suffer from.

A few essential survival skills I learned on this trip:

1. Plan about half as much activity as I think I can do. Reasonably, that's all I will have energy to do. The rest of the time I will need to rest and recuperate, to make sure I have energy to make it through the whole trip.
2. Bring plenty of migraine-friendly snacks for both the plane/car travel, and just to have in the hotel room. Always carry some in my purse to help avoid the unpredictable meal times that seem to be a requirement of traveling.
3. Comfort measures! I packed my robe and slippers, as well as a pillow and stuffed animal from home. Having these in my hotel room helped me to feel like I was still at home.
4. Ask for what you need. My hotel had recently "gone green" and switched to compact fluorescent light bulbs (CFLs), which are a migraine trigger for me. My sister very politely talked to the front desk for me and explained the problem, and within a half hour they replaced all the bulbs in my room with less-problematic incandescents. There's no need to quietly suffer. Plus, explaining this problem has the double benefit of educating the hotel staff, so other migraineurs who may stay in that hotel will run into less confusion from the hotel staff.
5. Balance aggravation vs cost. I bought some souvenirs at the conference and was worried about trying to get them home. My checked luggage was already overweight, and I didn't want to make my carry-on too heavy to deal with. I decided it was worth the cost to ship my souvenirs home to myself, and pay a little extra for overweight luggage so my carry-on was manageable. While I may have had to pay more money to do this, I saved myself a lot of frustration and energy I would have wasted on luggage.
   
6. Most importantly, leave the guilt at home. I had to cancel a lot of plans at the last minute because of how I was feeling, or in the interest of not feeling worse later. I reminded myself that migraine is a real disease that requires management, and feeling guilty because I can't do as much as others will serve no purpose other than making me feel worse. So I dumped the guilt and focused on making myself feel better so I could enjoy my trip.

I didn't get to do nearly as much as I wanted, or spend as much time with my family and friends as I wished. But I survived the trip without too much severe pain, or too intolerable migraine symptoms. This trip reinforced for me how important it is to be compassionate to myself, to be kind and understanding when I'm not feeling well. To remind myself it's not my fault. And to do for myself what I need.

I'd love for there to be a day when I can travel again like I used to, a higher energy kind of travel that doesn't require so much rest and recuperation. But for now, I'll take this: a shred of normalcy in my storm of chronic migraine.

-MJ