The Persistent Demon

It's weird, how difficult it is to write about this.

I have mentioned the migraines before. Most people who know me well know I get them, and get them often. Readers of this blog know I've been getting them more frequently these past several months, triggered by the therapy in some mysterious way. They are not really something I can hide.

But there's more to them than just discomfort and inconvenience. There's a whole history, a pathology, a legacy of shame and guilt built around them that I can't seem to shake no matter how hard I try.

I've always been a headache person. I had frequent, powerful headaches (migraines even then?) as a child, which were traced to food allergies and treated through dietary modifications. This worked, to some extent, although I remained prone to headaches in general.

The regular, monthly migraines didn't start until a few years after the accident, when I was about 26. They seemed to be connected to my menstrual cycle, so were categorized as "menstrual migraines."

(Future rant topic: the tendency for medical professionals to relegate "female troubles" like this into the "get over it, you hysterical idiot" category, which I hereby dub YWS, or "Yellow Wallpaper Syndrome." Thanks, docs.) **

Clearly, there was more to them than mere hormones. I know that now. Besides my cycle, I am also triggered by muscle tension in my neck and back, by stress, by sinus trouble, by alcohol, by roller coasters, by therapy sessions, by writing this blog, by thinking about therapy or writing this blog, and now I'm casting an inquiring eye upon dairy products, citrus, caffeine, and sugar. 

(How about AIR?! Is OXYGEN now a problem for me, migraines?! WELL?!)

But migraines are tricky and mysterious-- not much is known about them, and while there are medications that can help control them, there is no cure. 

A few migraine facts for you to ponder: 

• "Severe migraines are classified by the WHO (World Health Organization) as among the most disabling illnesses, comparable to dementia, quadriplegia, and active psychosis." (see link above for all citations)
• Migraine sufferers are 3 times more likely to have depression than healthy people, and are also more likely to attempt suicide.
• Women are about three times more likely to have migraines than men. Coincidentally (or not), migraine is "the least- publicly funded neurological illness relative to its economic impact." (YWS, anyone?)

So, serious. It's not just me-- these things suck.

But no matter what my intellect (and the WHO) tell me, it's embarrassing to have chronic, debilitating headaches. At least, it is for me. I fear it looks like I'm faking or exaggerating (a residual from a sickly childhood, wherein I sometimes did fake it), or like I'm complaining, or like I'm weak and can't handle a little discomfort. 

And then there's the guilt. I feel terribly guilty, like I'm forcing others to accommodate me. I don't like to ask for special dispensations. I don't like to put people out. I don't like to need help.

I don't like to need. And I certainly don't like anyone else to know it if I do. I think that's what it really comes down to. And yeah, I kind of know what's going on there, and I'm gearing up to tackle THAT little piece of fun in my next post.

So shame, once again, rears its ugly head. Having a migraine is somehow shameful, something to keep secret and suffer through in silence, and giving in to it and letting it impact my life (missing work, changing plans, having to lie down in a dark, quiet room) feels like a coward's retreat.

Still. After having one at least once a month for almost 15 years.

Migraines are also scary. Severe pain is scary enough on its own, but chronic pain, pain you know is coming and can't stop, is scary on a whole other level. You're afraid because you're helpless to avoid the pain, and then afraid of the helplessness itself.  

I am, I mean. I should say "I" here. I am afraid of being helpless against this. I am afraid of being helpless against anything.

And then, once the next episode becomes inevitable, it's a constant race against the clock: when will it start? Will I choose the right medication, and medicate it in time to keep it from getting bad? How bad will it get? How long will it last? What if it happens when I'm away from my medicine? What if the medicine doesn't work? When will it come back?

This anxiety is a constant undercurrent in my life. It's a form of claustrophobia, being trapped in a body that hurts. Sometimes I feel like I'm suffocating in my own skin. I can't imagine living the rest of my life like this.

Last summer, when the migraines began to change in nature, I was really encouraged. They actually became more frequent-- I have added a new and very sensitive trigger, with this therapy-- but they were much less intense and easier to control. 

More importantly, I'd removed so much of the fear element, with the knowledge that they are at least partly psychosomatic-- meaning that there is an emotional component, one that can be altered and maybe even removed. I had hope for the first time that I could resolve these headaches for good if I kept at the work.

I still think so. I still really, really hope so.

But for the past two or three months, the migraines have become even more frequent. These days, I have some level of migraine pain more often than not. Usually it's just lurking around the edges of my consciousness; an uneasy tingle in the scalp, a worm of nausea in the gut, eyes that struggle to hold focus, the occasional stab in the forehead. But this is enough to keep everything on high alert, and to set off all the same alarms that a full-fledged attack does. 

It's like walking around with a grenade in your pocket, hoping you don't jostle the pin loose. Every day. Every fucking day.

It gets to be too much, at times. I get tired of the strain. But I've been trying to keep the long view, knowing that if I can impact the migraines for the worse, I can probably also impact them for the better, and as I reduce the frequency and impact of the emotional triggers of the PTSR, I really do believe I'll reduce the frequency and the impact of the migraines.

I have to believe it. The alternative is just unthinkable.

But it's gotten harder, lately. The last two major episodes have been absolutely epic. The one I told you about already, one of the worst ever, was frighteningly intense but mercifully short-lived; the worst of it lasted about six hours. For me, that's a lucky break.

The second happened the weekend I was in Napa (it began while I was writing the previous post), and lasted four days, during which I had some of the worst and most persistent nausea I've had in years, which pretty much just ruins everything. 

And. most alarming of all, my meds stopped working.

_____

I'll pause here and back up a minute to remind you that in addition to the migraines, I've also struggled with major depression for years. This is common with PTSR and might even have been something I was prone to anyway, but it's not something I've felt comfortable talking about freely before.

I'm uneasy about doing it now, too, but it's relevant here and it's part of this condition and it's not something I want to gloss over. I want to be as honest as I can about what is happening to me.

I'm also really good at compartmentalizing it and putting up a good front and acting normal and together when I'm actually crumbling into tiny, claustrophobic pieces on the inside (I can feel myself pulling back right now, my language getting more remote and academic, my tone more impersonal; protect, maintain, oh yeah, I am good at this), so a lot of you might be surprised to hear this.

My depression has been fluctuating quite a bit during the therapy, as you might expect, and has been on the rise for some time now, and this change in the migraines was sort of the straw that broke the camel's back.

So I went to the doctor. I got some new migraine med samples, an anti-nausea med, a muscle relaxant. I can attack the next ones from all sides. I am holding one at bay now, in fact, with one of the samples. So far, so good.

And I also asked for anti-depressants. 

It's my second foray. The first was an 18-month stint of Prozac, 10 years ago. In conjunction with therapy, it was the best decision I could have made at the time and was very effective. This time, after holding off for 18 months while I got this EMDR treatment going and have entered into the world of PTSR recovery, I'm finally accepting the help.

I've needed this for a while. I'd convinced myself I couldn't do "the work" if I went on anti-depressants. Now I'm realizing I might be able to do it better with them. I'll have more focus, more energy, more motivation. I'd convinced myself I should be able to muster those on my own. 

I couldn't. Because when you're chemically depressed, you can't.

Depression is an insidious little demon. Its number one goal, as I've seen so clearly in others and am ruefully noticing now in myself, is to sustain itself. It is a master of self-preservation. Depression wants to live and thrive. It doesn't want you to feel better. It does whatever it can to keep you from taking action against it.

Depression tells you, "You're too tired to exercise," when exercise is exactly what you need to energize yourself. 

Depression tells you, "You're too busy/preoccupied/sad//unsocial to leave the house or talk to friends," when social connection is exactly what you need to bring you back to yourself and remind you of your support network.

Depression tells you, "The drugs will make you numb and you won't be able to feel anything," when they actually remove the fog and let you see yourself more clearly, not less.

Depression tells you, "You're weak if you take the meds. Only cowards need help," when identifying what you need to heal yourself and taking action, even when there's a stigma, even when you're afraid (especially then?), is actually a sign of strength.

Taking the help is a sign of strength. Showing the need... ahem... okay, talking to self in real time, here. I need to pay attention to this. Imma give this one its own paragraph:

Showing the need and accepting the help is a sign of strength. Remember that.

Idiot. 

And that brings us, friends, to right now. I'm on Welbutrin. Day Six. It has a profile that works for me, and none of the side effects I'd hoped to avoid, so I'd really like this to be the drug that works for me. It takes a few weeks to build to full potency, so I won't know for a while if it's right or not.

So far, though, so good. I've noticed that I'm already sleeping more soundly at night. I'm not knocked out or more tired or anything, just the quality of the actual sleep I get is better, smoother, with fewer wake-ups. As someone who hasn't slept more than 2-3 hours in a row without waking, child-induced or not, for over 3 years, this is Noteworthy.

After all the denial and resistance, the outlook is good. I suspect that this, like so many of my self-care decisions, will be something I'll wish I'd had the brains to do sooner.

But whatever. It is what it is, and it's done now. And like so many right decisions, it matters less why or when or what happens, because the power is in the doing, and in the doing, you are victorious.

Brave.

Strong.

_____

**If you don't know what the hell I'm talking about with The Yellow Wallpaper, here's a good analysis. The first few paragraphs should suffice, if you don't care to read the whole, nerdy thing.

A Request

Hello, dear readers!

I am coming to you live from St. Helena, California today. My superhero of a husband told me to go have a weekend to myself to recharge, and who am I to refuse such an offer?

So here I am, sitting in the window of a little cafe, watching the rain on the cobbled sidewalk outside. They say we'll have thunderstorms tonight, although I haven't heard anything yet. Two nights of uninterrupted sleep, a weekend of writing, good food, movie-watching, shoe-shopping... and now, thunderstorms?! 

I ask you: could this BE anymore perfect?!

Anyway. The next few posts are going to trigger me quite a bit, I suspect, so I'm going to hold off and start them next week. 

This week, I have a request for you:

If you are reading this blog, could you do me an enormous favor and sign up as a follower by clicking the "Join This Site" button in the right sidebar?

It doesn't do much, I admit. It puts my blog and any other Blogger blogs you follow on a dashboard for you so you can see at a glance who has updated. But as far as I can tell, that's it. No notifications for you about updates or comments or anything (for better or for worse. I would appreciate that, personally. Some people hate notifications. Here, we default to your preferences, haters. You win! Happy now?!).

HOWEVER: I do have ideas about turning this story into a book some day, and the more followers I have, the more additional ones I will draw, according to Those Who Know Such Things, and look at introverted little me, trying to draw followers!

So will you? Sign up? You won't get spammed or shamed or anything. You'll just have the warm, fuzzy satisfaction of knowing you've done someone a favor... and maybe, just maybe, one day you'll be able to say you knew me when, and you were following me before I sold out.

Thank you to all of you who read here. There are a lot of you! And thank you to all of you who comment, either here or on Facebook or in the private emails you have been sending me. 

You tell me my story is teaching you things about your own. Well, your words of sympathy, empathy, and support are teaching me, too.

We are not so different, you and I. The more I write, the more you write, the more I realize how connected we are, how no one's journey is only their own, how much it matters to meet others along the path, to nod or high-five in passing or to join arms and haul each other up a particularly steep and slippery hill. 

Coming or going, ahead or behind, armor-clad or barefoot and naked as the day we were born, we are all on the path together. 

I forget sometimes. You remind me. I'll try to keep returning the favor.

Sign up and follow. 

Thank you.

Real Time

One of my hopes for this blog was that once I'd gotten you caught up with the back story, I could start blogging what was happening in real time.

There are two problems with this idea. First, it's impossible to catch you up, because the more I learn about what's happening to me, the more things in the past click into place and become new chapters in the unfolding story. So there will always be a need to hop back and forth. Which is fine, just not as clean or linear as I once thought it could be.

I'm not sure that was a good goal to have, anyway.

The other problem is that I don't really WANT to talk about what's happening in real time. I like to tell stories, where I can draw the conclusions and tie up the loose ends and pull out a pretty moral and stand back at a safe distance and say, look at that, isn't that clever?

I don't like to talk about feelings I'm actually having, at the moment I'm actually having them.

For one thing, this requires a hell of a lot more insight into one's emotional self than I have. I'm not good at this. I don't feel my feelings in real time, so how can I discuss them? I need a few hours or days to figure out what was happening to me in whatever emotional moment I'm trying to examine.   

This gets absurd in the therapist's office. Conversation I've had more often than I can count:

"How does that make you feel?"

"I don't know."

"What are you feeling right now?"

"I'm trying to figure out why I reacted that way."

"That's not a feeling."

"But that's what I feel."

"No, that's what you think."

"I don't understand the difference."

Okay, that's a paraphrased conversation. But the spirit of it reigns in pretty much every conversation I've had with every therapist I've seen.

For a long, long time, I didn't even get the distinction they were making. I didn't just fail to understand the difference, I failed to understand that there WAS a difference.

I used to. I did. I was extremely emotional, and extremely emotionally aware as a teenager. Even for a while after my accident, I still spoke this language, still perceived the nuance. I was a  poet as an undergrad, for god's sake. The language of emotion might have been the only language I spoke.

But I am far away from that now, and somehow, doing this work has taken me further still. Once I started down this road, it became clear that in order to work through this stuff, I'd have to embrace it, accept it, and move through it.

By "this stuff," I don't just mean the emotional distance. I mean whatever fear, anger, and sadness may come from the work, as well. I mean the depression and paralysis that those things cause. 

And, since these are all the things I've been struggling to keep under control for the past 20 years and have been operating under the assumption that they were caused by my own weakness of character and not that car accident, doing this work feels a lot-- A LOT-- like I'm giving in to my worst self.

Like I've had a secret shame hidden in the back of my closet for years, and am now walking around with it pinned to my shirt instead.

This doesn't feel like work, it feels like surrender. It feels like I've lost the fight.

_____

Okay, wow, here's a real-time moment: looking back over the previous paragraphs, I see a glaring contradiction. Did you catch it?

I'm complaining about feeling emotional distance AND feeling fear, anger, and sadness? As my therapists have helpfully pointed out, those are feeling words. Even my emotionally-stunted self can see that.

So... here I am, in real time, calling bullshit on myself. It can either be feelings or no feelings that I'm struggling with. Right? Can't be both.

Or can it? In the last post, I told you about the fog that descended during an emotionally-charged time, eating everything in its path and erasing reality right before my eyes.

So maybe that's what my problem is now. The emotional distance isn't just my default way of being, end of story, as I've always assumed. It's the result of the PTSR working against the impact of the feelings I'm actually having, because my limbic system can't handle anything outside of those drastically-narrowed boundaries I've set.

So that means that if I find myself struggling more, feeling darker, sadder, more depressed, more lethargic, further away from whatever epiphanal moment I've imagined is coming at the end of all of this, lost in some sort of dark, sterile void... it's not because I am emotionally distant, but because this is what emotions feel like and I've just forgotten?

The body knows, says Dr. Oz. What are you feeling in your body right now?

Tightness in my chest and abdomen. Can't draw a full breath. A familiar, chronic, frustrating feeling. Restricted lungs, with the added indignity of aching muscles in my back from restricting them my own damn self.

What else?

Frequent throbs in the forehead: the lingering traces of the migraine I had on Thursday, which was-- and this is really saying something, friends-- the second-worst headache I have ever had in my life. It was genuinely terrifying. Headaches like that make you think of things that seem crazy later but like the only possible truth in the moment: Aneurysm. Stroke. Sudden, screaming death. 

My husband pointed out to me this morning that I haven't been the same since it happened. I've been in some dark place ever since.

Assuming that these headaches are tied in to all of this-- and I think it's the correct assumption-- I think I may just have figured out the cause, or at least a major contributor. 

My problem isn't that I'm not feeling, it's that I am feeling. This is all working and I'm beginning to feel things again, and then I'm overcompensating by trying to erase it all as it happens, by any means necessary. 

Fog, funk, headache. 

Erase. Distract. Sabotage.

Huh.

Huh.

I've got to think about this for a bit.