Saturday, July 20, 2013

Bemoaning Bitterness. Boycotting Boring. Bonus: Biking.

What was I saying about not being a "poor me" type of person?

Well. It turns out that I wasn't rejected by the migraine medication trial because I had too many migraines (poor me!), after all.

It was actually because of the Wellbutrin. 

I have crossed voicemails with the liaison there a couple of times this week, so I don't have very detailed information, but I was told that the doctor I spoke to-- the one who thought I'd be a particularly good candidate for the study-- had been fighting to have me included despite my current course of Wellbutrin.

Apparently, he'd kept up the fight all month, but in the end, the people in charge refused to admit me. Which is why I wasn't told until the day I was supposed to schedule my infusion.

On one hand, I really appreciate the doctor's tenacity. It was cool of him to push on my behalf.

On the other hand, you can't tell people with a debilitating chronic illness that there is a 50/50 chance of them getting a life-changing drug that will make them better when there isn't. I never had a 50/50 chance, if the Wellbutrin was an issue from the beginning. 

It would have been nice to be a bit more emotionally prepared for a "no."

So anyway. I really latched on to that "too many migraines" theory because it was the only thing that made sense to me, and that was definitely me saying "poor me."

Not that I don't get to say that every once in a while, I guess, but I don't like to do that, and I really don't like feeling like I deluded myself a little bit. It doesn't serve a constructive purpose, complaining. It doesn't change the facts, and it doesn't help me feel anything more than victimized.

Which is dumb.

My inner Sherlock is appalled.

Oh well. Disappointment is one of my all-time least favorite feelings. Don't like to feel it, don't like others to feel it. This is at the root of a lot of my anxiety in the world, I think. I've built an entire avoidant personality around never being disappointed, and have spent a lot of time twisting myself into a shape that runs the least risk of disappointing others.

Talk about exhausting. Talk about bland as hell.

It's boring, being a person who never risks disappointment. Gotta do something about that.

Well, I've no idea where that came from, but there it is. I've turned my rejection from the migraine trial into a quest not to be boring.

That seems reasonable, no?

I do have to admit that whenever something major happens to me-- something with a big emotional impact, which happens so, so rarely-- there is always a tiny part of me that thinks, This is what real life feels like. This is what it feels like to be a real person.

Those moments, while often painful, are always a little bit exciting for that reason. I'm doing it, I think. I'm having a normal, reasonable, in-the-moment reaction. I am feeling my feelings right now, as I'm having them. I'm acting like a legitimate human.

On the other hand, the breathtaking rarity of these moments means that they tend to highlight how very unfamiliar I am with acting like a legitimate human. It's hard not to notice how completely foreign it feels.

Sherlock, you do your job well, my friend.

I told Dr. Oz the other night that I've been feeling very triggered lately, without knowing why. My skin feels all raw and crawly and I've been very on-edge.

During the course of the conversation, it clicked: I got a new bike and trailer for hauling my little girls around, and I've been riding it on the street, which is something I've not really done before, and I feel a bit unsafe.

I feel exposed on the bike. I feel vulnerable. And I feel it in a way that hits very, very close to home. I'm a cautious rider, and my hyper-vigilance is in full swing whenever I'm on the road, scanning for obstacles, threats, pedestrians, car doors, whatever. I am constantly braced for impending emergency. 

But it's the exact same situation that occurred to me after my car accident, magnified by a few degrees: you can be doing everything right, following all the rules, and still, something can happen to you. Accidents happen. When you're on a bike, an accident is even scarier, because you're not protected by a steel frame and a seatbelt.

Surprise, surprise: feeling physically unsafe while operating a vehicle on a street with other vehicles around me freaks me the fuck out. Or at least, it freaks my lizard brain out. The rest of me is working through it.

There are a few mitigating factors. I live on a smallish island, where there's not a lot of traffic and the speed limit is a strictly-enforced 25MPH. That's an enormous help. There are also bike lanes here and there. I wish there were more, but I'm grateful for the ones that are there.

I also used to ride a Honda Elite, so I'm familiar with the indifference car drivers often show to people on bikes and cycles. I'm glad I don't have to learn that on top of the rest of it right now. I feel prepared for that, although it certainly triggers the hyper-vigilance.

One thing that will help me with this is time. I'm a novice cyclist. I'd be a little uncomfortable until I learned the ropes under any circumstances. So I know that some of my unease will fade. There are free bike safety classes offered monthly in my community, and I'm going to take one.

<I just went and registered for it. August 8th. Done.>

Those things will help. Part of this reaction is normal. It's also normal to be extra-vigilant when you're on a bike, and to be safety-conscious.

That's what makes this kind of difficult to parse. I'm not sure where the line is. How much of what I'm feeling and doing is appropriate, and how much isn't? At what point does my lizard brain take over?

I don't want to put myself or my kids or anyone else in danger by riding a bike with forces beyond my direct control trying to take over my brain.

I'm keeping up with it, though. I'm working on the "time-and-familiarity" part. Practice makes perfect, right? And really, there are few urban areas more conducive to this little experiment than mine, so it's a great place to be doing this.

My goal is to stop driving my car on the island except during extreme weather. It's small enough here that this is absolutely doable. And even though the actual travel takes around twice as long on the bike, we're talking about 10 minutes instead of five to most of the places I go. It's only a 15-minute drive across the whole island, end to end.

So this whole bike thing has turned out to be a little bigger than I thought it would be. It's giving me more than just a physical workout, apparently. It's a good thing. I feel like I can work with that, even though it's a little scary, emotionally and physically. 

And even though it took me a couple of weeks to figure out what my lizard brain was up to.

In other news: I'm looking for a cool bike helmet that doesn't look like some sort of alien spaceship landed on my head. Does such a thing exist?

Saturday, July 6, 2013

A Little Nietzsche For A Saturday Afternoon

So the good news is that I can tell you all about my migraines and the research trial now.

The bad news is that the reason I can tell you about it is that I'm not in the trial anymore.

A month ago, after reviewing my entire medical history, taking blood samples, and administering an EKG, they deemed me worthy of participation (the doctor even thought I'd be particularly impacted by this drug because of my set of circumstances and was excited to see my results). So they gave me a little digital diary and asked me to record my migraines for a month.

The purpose of this was to set a baseline for my migraine patterns, so they could measure the impact of the drug over the next few months. Remember, the drug is a prophylactic, so it stops migraines before they start. The only measure of its effectiveness is a lack of migraines. 

So I diligently recorded my migraines all month. Had a lot of them. More than usual. And I never missed a day with my digital diary.

Yesterday, I got a voicemail from the research clinic. I assumed they'd be calling to set up my appointment for the infusion, so before I even listened to it, I started lining up a babysitter and figuring out when I could devote most of a day to the process.

And then I listened to the message. They were calling to tell me that they were very sorry, but I did not qualify for the trial.

And you'll never guess why.

Wait for it...

I had too many migraine days this month.

Too many migraines. I can't get the migraine drug because I have too many migraines.

I remembered, after I hung up the phone, that they were looking for candidates with 5-15 migraine days per month. I think I usually fall into that category. And it never occurred to me that I could disqualify myself at this point if I went over that number.

Honestly, it never occurred to me that I would go over that number. 

I am going to call them on Monday to find out how many days I had. I should say that I am extrapolating all of this from the sudden moment of clarity about those migraine day requirements after I heard the news. She didn't state the reason in the voicemail. And there is a small possibility that it has something to do with my Wellbutrin prescription, about which the doctor called the other day to ask a few more questions. 

But they knew everything about that a month ago, and it wasn't a problem, so I am 95% sure it's the other reason. The one I forgot about. That upper limit. No more than 15 migraine days. 

Looking back, I'm sure I exceeded it. I had a few this month that lasted two or three days, and one that completely incapacitated me for a day, which almost never happens. I went through two months' worth of my migraine prescription in about a week and a half. (I should clarify: I took the meds at a safe, doctor-recommended dosage, but it usually takes me two months to use the number of pills I used this past month, because I usually don't need the heavy-duty meds that often).

Anyway. I hung up the phone and had a few reeling moments of disbelief. Like: What the ever-loving FUCK did they just say to me? Are you KIDDING ME?! Did that just happen?!

Then I went out to the back yard to tell my husband the news.

And before I got through telling him, I broke down crying.

Me. Broke down crying.

For a while after that, I couldn't even speak. The whole upper-limit thing occurred to me then, and the bitter irony of that fact did not help matters one bit.

I was just stunned. Too stunned to think.

Oh, and to top it all off: I had a migraine at the time.

I gave up trying to push through my migraine, then, and went to lie down instead. Slept a bit. Woke a bit. Slept a bit more. Got up in time to put my kids to bed and sit on the couch and stare at the floor for a while. Went out and got a yes-I-know-it's-emotional-eating-but-my-migraine-induced-nausea-wants-a-hangover-meal-right-now fast food dinner. Watched Dexter. 

Tried to shake it off.

My husband, a fiercely-determined optimist when it comes to taking control of one's bodily issues, was visibly restraining himself from giving me laundry lists of up-sides and what-nows and reassuring platitudes, which I greatly appreciate. Instead, he simply said, "I know this is really disappointing, and we can figure out what's next later. Right now I think it's important that you just let yourself feel your feelings." 

He's a good one, that guy. And he did point out one thing that was always a little scary about this and now... well... isn't:

At least now I'm not possibly going to be injected with an unapproved, unregulated chemical with unknown consequences.

So, there's that.

The whole ordeal also gave me a front-row seat, once again, in the theater of my subconscious. I got to observe myself doing some things I don't do every often, and I got to do it with enough perspective to see the whys and hows.

I was pretty well devastated by this news, and while some disappointment is understandable, even I could see that being completely leveled into catatonia by it was, perhaps, a bit of a strong reaction.

Unless you consider what was really happening. And what was really happening was this: this whole thing had found a chink in my armor (hope!) and gotten through it, and when it was taken away, I got a glimpse into the abyss.

There is a great well of hopelessness that accompanies chronic illness. Or can, if you let it. People deal with it in different ways. Some people fight it off and never let it get its hooks in.

That would be a really good way to deal with it, I think.

Other people dive into it head first, and let themselves flounder and drown in sorrow, anger, regret, bitterness, self-pity. That stuff is always lurking, when you have a body that betrays you regularly and over which you never feel you have complete control.

I'd lay odds that it is tempting for most people to give in to it, at least sometimes. I'd bet that even the super-positive people, the ones who fight it off and become saints on Earth, smiling in the face of tragedy and overcoming the shit out of it-- the people they make the movies about-- even those people have had to look into the abyss at some point.

Good for them, that they responded with a "Nope, not for me, thanks," and walked away. And continue to respond that way over and over, because the abyss is always there, and it's always possible to dip a toe in.

Still others-- maybe most of us-- find a strange half-way point between the two. I do. And from where I'm standing, it looks to me like this is exactly what PTSR is, when it comes down to it: some of us refuse to let ourselves fall completely into the abyss, but we also refuse to let ourselves leave it behind, for one reason or another.

So we carry it around with us. The abyss. The whole thing. We cram it all in there, and it settles itself somewhere between our thinking brains and our emotional ones, and if we're lucky we can build a few bridges across it and maybe even wall it off in places and forget about it all together, but it's still in there, waiting, and even the most intrepid tightrope walkers among us-- and I was one of those, not to brag-- gets the occasional, teetering loss of balance.

And when we do, for a moment, there's nowhere to look but down. And it's a long, long way down. Longer than we thought. Longer than we knew. 

Because we don't spend our time looking down there. We spend our time Keeping A Lid On It™.

The "It" is question is the abyss.

Whoa. I just thought of that just now, this minute. Damn, that's deep. Ba dum bum. 

But anyway, yeah. For just a moment, yesterday, I looked down. And I saw what I spend so much time and energy and effort holding at bay. I saw the stuff I can't allow myself to accept, for fear of drowning, but also can't seem to allow myself to set free. 

For a moment, I felt hopeless. I felt what I realize now I have made myself determined never to feel: lost, irredeemable, permanently damaged and without that distant promise of resolution that I've been heading toward for years, even before I started this therapy, even before I knew where I was going.

I felt, for a moment, real despair.

But in the end, it turns out that like my husband, I have a bit of the relentless optimist in me, too.

I did not know that before today.

And that's part of what I've learned in the past 24 hours. I am, by nature, an optimist. Even when it takes me more time than I'm used to to shake off the darkness, I immediately begin looking for the light.

That's a nice thing to know. 

I've also learned that despite the fact that there is a deep well of despair and hopelessness inside of me, I do a pretty good job, almost all of the time, of keeping my balance on that tightrope and staying above it all.

For better AND for worse. I'm working on the worse. This is the better: There are things that could have struck me down by now. Things that should have, really. Things that no reasonable person should be expected to endure, and I've endured them. I didn't face the abyss knowingly and make a conscious choice to walk away, but the affect, in my day-to-day existence, has been close to the same.

I haven't let it get me down. Not really. Not completely.

I don't wallow in self-pity. I never ask, "Why me?" I don't feel like the world is out to get me. I don't fear that one bad deal will lead to another. 

I'm not drowning. I will never drown.

Here's how I know: even as I was sitting there, stunned into silence, feeling the helpless dread of enduring yet another migraine, years more of pain, a lifetime of crippling headaches that make me less than what I want to be, a part of me was sitting back and watching the show, and saying, Wow, this is what I would feel like all the time if I let it consume me; this is the magnitude of what I'm holding back, every minute of every day. This is an enormous thing I'm fighting, and for the most part, I beat it. Every day. 

Even in the midst of despair, I saw how easy it would be to give in, and also how impossible, and I knew it would pass and I knew I would win. 

Because even with migraines, I Want To Live.

And that leads me to another thing I know today that I didn't know yesterday: I have perspective on one more aspect of this PTSR and the ways it has held me prisoner. And if I can see it, I can do something about it.

And if I can do something about that, maybe I'll be doing something about the migraines, too. Maybe I really do have some control over them. If I do, this is where it lies. That, I know for sure.

Yesterday, I saw the abyss. Today, I know I can still cross it. Even when I know it's there.

Maybe especially then.

Finally, lest you or I doubt it, I have confirmed that optimist thing by writing this very post, which I had intended to do without a happy ending. I was still feeling the despair, when I sat down to write. I had just planned to show you the abyss, give you a glimpse for yourself, so you could see what I was up against.

Instead, I've made the fact that I didn't fall in sort of hard to ignore. Even for me.

So, that's what happened to me yesterday. I looked into the abyss. It tried to look into me. I said, All right, abyss, if that's what you really want, I suppose you can look for just a min- Hey, wait a minute, no, no you can't, changed my mind, sod off.

(the above is an abbreviated re-enactment and does not represent actual time elapsed)

(I still said it, though)

And you, you lucky ducks, get to hear aaaaaallll about my migraines from now on. At least, until they call me for the next trial. I hear there's one in the Fall.

Migraine reporting shall resume in T-minus 5...4...3...2...

Ahem. Hello. Today, I do not have a migraine.

As new starts go, that's not so bad, eh?