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

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

RWM is on vacation

Just a quick note: DBF and I are on vacation until July 10, so Rhymes With Migraine will return later this month. In the meantime, I invite you to check out the many great blogs on my blog roll.

Happy Fourth!

Be well,
MJ

asking for help

Growing up with a mother as a therapist, I never doubted the efficacy or necessity of therapy, nor did I ever attach any sort of stigma to therapy.

Why, then, can it still be so hard to ask for help?

I've seen therapists four times in my life now. The first was over a summer while I was in college, to cope with some issues I had with my father. The second and third were during college, for much the same reason. The fourth was last summer, when I saw a counselor through my Employee Assistance Program (EAP). I had three sessions covered completely by my insurance, and needed a "boost" to get through the combination of neverending illness and the big life change of DBF moving in with me.

I have no doubt that traditional psychotherapy has helped me very much in the past. I have mild depression when my migraines are in a bad cycle, which has been particularly tenacious now that my migraines are really out of control. But I still put off calling my new EAP for a therapy referral for months.

It can be really difficult to ask for help. It's hard enough to ask DBF for help, to get me a glass of water, to make me some tea or even to come to the doctor with me. It's even harder to make a phone call to find a therapist. Is there something wrong with me, that I can't cope with this on my own?

Of course not.

Chronic illness is difficult to cope with because of its chronic nature. Chronic means, it isn't just going to go away after one treatment. It means, in my case, I will always be a migraineur. This disease is something I will always have to manage, whether with aggressive treatments and preventives, or simple relaxation techniques and acute treatment.

My particular situation has been difficult because I've had constant, daily migraine pain since sometime in November. Before that, I had daily pain from migraines or chronic daily headache. I've been in some sort of daily pain for two years now, since I first titrated off the Topamax I took all through college. Daily pain and generally feeling sick from my other migraine symptoms is enough to wear anyone down. The depression hand-in-hand with the migraines is, well, depressing.

Plus, I'm young. I'm at a time in my life when I'm establishing my career and social life. I moved to a whole new state just two years ago, where I've had to establish new ties and a new life. Balancing this with coping with chronic illness is too much for me at times.

Nothing I'm saying here I didn't know. It was still difficult for me to pick up the phone and call my EAP. But I've done it, and I feel better already. Hopefully I can get my first therapy appointment before DBF and I leave for vacation on Thursday.

Ah, yes. Vacation. DBF and I are going away for a week to our company's timeshare condo right on a lake only a few hours from here. We plan to have a relaxing week away, and since it's just the two of us, there's no pressure. The condo has a kitchen, so sticking to my restrictive diet shouldn't be too much of a problem.

So that's where I am. Therapy = good. Vacation = awesome.

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