learning to ask for help

DF and I recently went on vacation to Charleston SC for a week, which marked the official start of our wedding planning. We had a great trip. The first half we spent with my mom and sister; after they left, we had three days to ourselves to play tourist. I actually felt fairly good during vacation. I still had the daily head pain from my Migraines and IIH, but I paced myself and practiced good self-care, and was able to enjoy our vacation - even if a lot of it was spent in the condo we stayed at.

When we came home last week, the real world seemed to crash back into place around us. All the stress we had been ignoring about unemployment, finances and everything else hit hard. I realized - on the plane ride home, in fact - how much my Anxiety has gotten out of control over the summer.

Like many Migraineurs, I struggle with a number of comorbid conditions: Migraines, IBS and mood disorders (namely Anxiety and Depression). I've struggled with bouts of Depression in the past, particularly during my third year of college when I first got sick. Even after my Migraines and IIH were successfully treated, the Depression stuck around for a long time.

It's no secret to me that this has been a difficult summer. DF and I have not been able to land "real" jobs after being laid off last November. Between our paychecks and unemployment checks, we're making ends meet and aren't in any immediate danger, but everything feels very precarious. My health has only just started to improve from the very low point of last year. I've been dealing with a triple whammy, in a sense, of my unemployment, DF's unemployment and my crummy health.

This summer has marked a vicious cycle of Anxiety-pain-Depression-Anxiety that I just cannot get out of. The Anxiety about all the life stresses feeds my pain, and the pain in turn feeds my Anxiety. While I'm having less pain overall (thanks to the acetazolamide for my IIH), I still have not had any break in my pain in several years, and I still have a long way to go to find an effective treatment regimen.

I saw Dr E for a follow-up appointment on October 1, the day after DF and I got home from vacation. As I sat in the waiting room writing down last minute questions, I wrote a note about my Anxiety. It was serendipitous that my appointment with Dr E was right after vacation, when I realized how much I've been struggling, so I was willing to bring up my concerns. Anxiety and Depression are hard things to talk about, even with a doctor whom I trust.

In fact, I have spoken with Dr E about this same issue in the past, which made it easier to bring up this time. When I saw him in February, we discussed my Anxiety as related to unemployment; at that point neither DF nor I had any job prospects on the horizon. Dr E prescribed a low dose of citalopram (Celexa), though I never started taking it since I did find a job not long after my appointment.

But now I find myself stuck in the same position. And it's just tiring to feel all this emotional upheaval on top of my regular physical symptoms. I feel so frustrated by the constant pain, the daily dizziness and nausea, that I often just want to scream. The longer all of this stretches on, the harder it becomes to cope.

Dr E wrote me a new scrip for the citalopram, leaving it up to me to fill it any time after the appointment if I felt ready for it. (He understands and respects my reluctance to try new medications after a series of really bad reactions.) I decided earlier this week to get it filled, and will be starting it next week. And I'm nervous about it.

It's so difficult to ask for help because it can be so difficult to admit to myself that I need help. I can't think myself out of my mood disruptions any more than I can think myself out of my Migraines. While I can do relaxation exercises and other non-drug therapies to mitigate my symptoms, they will not change the underlying chemical and neurological problems. So Monday evening, I will take my first dose of citalopram and hope for the best.

I'm learning, once again, how to ask for help when I need it, and trying not to feel like a failure for needing it.


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

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