Prayer, Interrupted

The other day I had a full-body cataplexy attack in church.

I was feeling ‘off’ before I entered the chapel — I thought maybe I was nauseous, but in retrospect it’s obvious that I was just overly tired — and once as I sat in the pew, folding my hands and beginning to pray, that feeling intensified, and with it came a strong, primal fear, and the desire to escape, like a prey animal. This strange flight response generally precedes my full-body attacks — it’s as if my body realizes before I do that something bad is about to happen.

Breathe, I told myself. You’ll be fine.

In the chapel with me were a few other people my age, members of a church group that met on a weekly basis. I had just started attending their events; today’s was an hour of prayer followed by a ‘book club’. They were going to discuss The Great Divorce by C.S. Lewis, a riff on Dante’s Divine Comedy — both works that I could dissect in my sleep, and I was hoping to befriend these church people by means of my superior book skills.

Breathe, I repeated to myself. In, out. Deep from the diaphragm, because pulling air from my chest was becoming difficult. I tried to swallow, but my neck muscles weren’t responding right, weren’t strong enough to bring stuff down my throat.

This is not cataplexy, I told myself. This is nausea. You will not have cataplexy here. You will not make a scene. Calm down. Think nothing.

My head was dropping towards my chest. I reached for my copy of The Great Divorce, my arms slow and my hands unresponsive. You hysterical, attention-seeking girl. You will not make a scene. You will not scare off these potential friends by being that weird fainting girl. That cannot be their first impression of you.

The air looked unreal. I could see the hazy, spreading colors separating the different layers of the air, the pew in front of me far away. I was the only real thing, everything else was wavy, insubstantial, a dream.

In general, when things become unreal, my prey-animal fear intensifies, and I know that I have less than a minute to get somewhere safe. Cataplexy is vengeful — the longer you fight it, the stronger it runs through you when you finally give in. It does not like to be kept waiting.

I grabbed my book — it took two tries — and my purse, and stumbled out of the chapel. Luckily, the women’s bathroom was right beside the chapel, and I barely made it to the handicapped stall. I am the master of bathroom cataplexy — I know how to hide in a handicapped stall so that nobody can see me unless they’re looking, my back against the stall’s partition, legs straight out. Back when I truly believed that my ‘fainting spells’ were psychologically-driven maneuvers, unconscious ploys for attention faked by some disordered part of my personality, the bathroom became my go-to cataplexy spot, safe from the humiliation that comes with falling in front of people.

(Side note: How can cataplexy be a ploy for attention if nobody ever sees you having cataplexy? Still, on some level it’s easier to believe that I’m a drama-craving attention whore who pretends to faint than to recognize the truth: I have no control over my body.)

As my eyes closed and my head dropped low to my chest, partially blocking my airway, I felt uneasy. If anyone from the chapel came in, they might see me, and they would freak out, and possibly go get the others for help, and I wouldn’t be able to calm them down and explain. They would check my medical bracelet and know that I have narcolepsy, but they wouldn’t understand what was happening, and I would become the girl who sleeps in bathrooms, and that would be their first impression of me.

I breathed, I let the cataplexy wash over me and I thought of nothing until I felt a little better. I managed to stand up and, with the help of the wall, I left the bathroom and went into a room across the hall, far enough away that nobody from the chapel would see me.

In the room, I laid on the floor, panting as if I was being chased. I closed my eyes. My breathing slowed. I opened my eyes. I couldn’t move. Get up, I told myself. You’ve had your dramatic little fall, get up. I couldn’t. Move your hand. I couldn’t. Swallow, you’re drooling. I couldn’t.

I saw swooping black shapes around me. Not demons, I told myself. Dream intrusions. I heard my mom saying, “Lainey? Lainey!”. A black figure stood, for a moment, by the door, before vanishing.

My eyes were open. I was crying. It’s a strange feeling to have tears coursing down your cheeks while your face remains perfectly still.

I stayed like that, stuck somewhere between dreams and reality, for more than five minutes but less than ten, I think. It’s hard to say. I tried to pray — I was technically still in a church, after all — but all I could think to tell God was “I’m sorry”, because I felt bad for not being in the chapel.

Finally, I could swallow. Then I could sit up. Then I could make my way slowly out of the building and into my car, where I called my mom. I rehearsed in my mind, over and over, what I was going to say to her, so that it would have as little emotional content as possible — so I wouldn’t have more cataplexy. “Can you come get me,” I said. The inflection was all wrong, my frozen face didn’t want to make the words — I sounded like a stroke victim.

“Where are you? At church? What’s wrong?”

“In the parking lot. Car.”

“Are you okay?”

“I had. Um. I had. Cataplexy.”

“I’m on my way,” she said. I hung up and rested my head on the driver’s side window and thought blank thoughts until she picked me up. We went home and she was sad and I was sad and I hoped that God understood that it wasn’t on purpose.

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Alternative Remedies, Round One

Yesterday I decided to forgo my usual med cocktail in favor of trying something a little different: an alternative remedy! 

What is this alternative remedy, you might ask?

It’s a nicotine patch!

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Do I smoke? No. Am I using the patch with maximum nicotine, made for the most hardcore, 3-pack-a-day smokers? Absolutely!

In all seriousness, my neurologist did suggest that a nicotine patch might be a viable option for increasing my wakefulness. Nicotine is a stimulant, and the patch releases it throughout the day, so it  has potential to improve my baseline level of alertness. Additionally, nicotine is a REM (dream sleep) suppressant, which means it would decrease the frequency of cataplexy, sleep paralysis, and hallucinations, since all of these things are intrusions of dream sleep into my waking hours.

Yesterday I decided to give it a go! I had a ‘good wake-up’ around 8am, meaning I woke up straight out of light sleep like a normal person, so I was able to get out of bed and start the day without feeling like death. Since I didn’t need my meds to get me out of bed, this was the perfect day to skip them and apply the patch! So I did.

Results of my alternative remedy experiment: The nicotine patch is BS!

Two hours later, I took the patch off, disappointed. It had worked a little, tiny bit, but it was 10 o’clock in the morning and I needed a nap, as usual. There was no point in keeping it on longer, since I can’t be waiting around for hours until the nicotine builds up in my system — I’ve got to use something that will wake me up right away!

Maybe if I combined the patch with my regular meds, it would have more of an effect, but I’m not going to do that without talking to my doctor first, because I don’t want my poor overworked heart to explode.

So my first alternative remedy experiment was a bust. Oh, well! Next I’ll have to try essential oils or some sort of hippie moon root or something. In the meantime, I’ll just keep popping my pills.

An Inappropriate Response

   At this point, not many people know that I have narcolepsy. I’ve told a few, and I try to keep it light so that the conversation doesn’t get weird. Nobody really understands narcolepsy, because it’s extremely complicated and involves science stuff, and I don’t blame them. It can hurt, though, when people are dismissive of a condition that colors my every waking moment (waking moment! Get it?). 

Case in point: I was catching up with an old friend, and mentioned that I had been diagnosed with narcolepsy. His response: “Oh, yeah, your ex-boyfriend told me about that. How’s that going, by the way?”

I took a deep breath and began to launch into the whole thing: My cataplexy, the diagnostic process, how I’ve been adjusting, all that.

Midway into my first sentence, my friend stopped me. “No, no, I mean the situation with your ex. How’s THAT going?”

He didn’t mean anything by it, but his dismissal stung, and we haven’t really talked since.

The truth is, most people are like that, myself included. Be honest — wouldn’t you rather hear some juicy gossip than a detailed description of how it feels to live with a chronic and incurable illness? Being sick is a downer, and people don’t know how to respond to it. This is especially true when you’re 21 years old, and the rest of your friends are still feeling the heady, lingering effects of teenage invincibility, living as if they’ll be special and pretty and full of potential forever. It’s strange to be young and limited. 

Missing Out

     One of the worst part about having narcolepsy is that you start missing out. It’s a terrible thing to lay on the couch, suffocating under the thick pressure of sleep, feeling the activities that I love doing slip through my fingers like sand — I can’t hold them all anymore.

I used to have four good hours after waking up, during which I usually did homework or studied languages or painted. I had to cram in as much as possible during those hours, because I knew that after they had passed, I would be done for the day. Then four hours became two, then two became one, and then, by the time I had finished showering and doing my makeup in the morning, my body was begging me to go back to bed.

Now, when I wake up, I don’t wake up at all. I have to use my medicine to give me a couple good hours, and even then, sometimes the medicine doesn’t help. It didn’t today.

I used to love reading, and painting, and writing, and watching TV, and studying languages, and running, and playing music. I still love doing all these things, but you can’t read when you’re narcolepsy tired. You can’t paint. You can’t write.

You can sit and stew in your misery and aimlessly surf the internet and blink and see that another hour has passed — you are of the world, but you are not in the world.

But it’s okay — tomorrow will be better. And if not tomorrow, the next day, or the next. Sleep rolls in like the tide and it washes away, keeping to its own mysterious cycle, and I need to learn to roll with it.

Drug Holiday

Every so often, I convince myself that I don’t need my narcolepsy meds. This is a stupid thing to convince myself of, but I do it all the same.

The argument goes something like this: As I was developing narcolepsy, I went for years without taking any medication, and I did pretty alright then, and now I’m pumped full of schedule II meds more or less 24/7. How necessary can all those drugs really be? It’s probably Big Pharma, trying to make a quick buck off me. But no more!

This is the part where I decide to free myself from the shackles of medication by taking a ‘drug holiday’. This means not taking my meds, or taking less of them, for a day or so, to get it all out of my system. Maybe, I tell myself, once I’ve peed out the last of the stimulants, I’ll realize that I truly don’t need drugs to function! All I need is a little willpower and the courage to reject Big Pharma!

As I mentioned above, this is a catastrophically stupid idea.

The day before my ‘drug holiday’, I plan appropriately by timing my meds so that I don’t take any medication past noon. That way, when I wake up the next day, I will have gone nearly 24 hours drug-free already! Success is in the air!

This is when the plan starts to fall apart.

If I stop taking my meds at noon, by the time three o’clock rolls around, I’m getting tired. By four o’clock, it’s not safe for me to drive. If I still insist on going med-free, by six o’clock I will be either dead asleep or hallucinating animals everywhere and hearing the door of my house slam open and shut, footsteps running up and down the stairs, despite the fact that I am home alone.

IMG_0447having an awesome time during my last drug holiday!!! #blessed

After counting down the minutes until I can finally go to bed, I will give myself a pep talk and then set several alarms for varying times — an incredibly optimistic 8:35am, a more realistic 9:15am, a 9:20am just in case my morning self is feeling lazy, a resigned 10:30am alarm — because it might be a bad morning, you never know — and a desperate 11:15am, for the worst case scenario.

One of two things always happens:

1. While sleeping, I will either turn off all of these alarms or turn off all but one, which I will change to a stupidly late time, such as 4:28pm.

2. I will keep all of my alarms on but sleep through every single one of them.

This is where my drug holiday inevitably ends — when I can’t get out of bed. It’s not a withdrawal thing, either — this routine was par for the course before my diagnosis. Eventually, I wake up, late for my first engagement of the day, exhausted as if I didn’t sleep at all, and depressed at my failure to launch, again. Cursing my lack of willpower, shaking my fist at Big Pharma, promising God that next time things will be different, I pull my meds out of my sock drawer and pop a few pills.

Fifteen minutes later, I’m good as new.