Xyrem Vol. 6: One Year

I took my first dose of Xyrem 365 days ago TODAY.  Am I better? YES! Am i still sleepy? Yes.  About 2 months ago the reality of my narcolepsy set in: managing my sleepiness is, and always will be, something I work at every single day.  You might think – “Well, yeah. You have narcolepsy.  That’s how this works.”  But I really thought that Xyrem – this narcolepsy wonder drug – was going to be something that I ramp up over the course of a year, and then I would get to the therapeutic dose and be a normal, wakeful human.  That is so far from the reality.

This last year has been a shitshow.  I’m talking “let’s take graceful photos of each other under water” kind of shitshow. Like…where you work so hard to get things to come together and then the best photo from the series is the one above.  I missed birthdays, sales tax deadlines, and still haven’t sent my best friend her wedding gift. But I let myself sleep without guilt and I took time to mourn the years I lost and the life I’ll never live. I’m free in a way I never was before I had a diagnosis and a drug that gave me dreamless sleep.  My hallucinations around sleep are drastically diminished and the same thing goes for my disturbing dreams.  These days, waking up from nightmares (like the one I had two nights ago about dogs that drown humans) is indicative of missing the alarm for my second dose (I.e. I spent too much time in REM sleep – which is my narcolepsy brain’s default – rather than Xyrem sleep).

I think that one of the best ways to describe the impact of Xyrem on my life is as a patronus.  Before Xyrem, I tossed and turned at night, and woke up from horrendous dreams only to spend hours slipping in and out of hallucinations.  It was a veritable prison.  Now when Xyrem hits me, I go to sleep and I generally wake up 2-4 hours later feeling good.  It wasn’t until my REM started getting under control that I realized how negative of an impact the nightmares and hallucinations actually had on me.  Xyrem, I will be forever grateful to you for that.

What Xyrem hasn’t given me, I’ve gotten from my community.  This diagnosis pushed me to open up about my disease to my family, friends, and ultimately the world wide web.  I made incredible friendships through this blog and met people in the online chronic illness community who inspire me and cheer me on.

It turns out that living with narcolepsy is more of a marathon than a sprint.  Perhaps thats okay.  We all have our battles and mine is teaching me to be present.

Visit my narcolepsy resource guide here, and read all of my posts about sleep here.

How have you changed this year?

I was substitute teaching last week and the principal challenged the students to think about how they’ve changed during the school year. I beat myself up a lot for not getting “enough” done, etc., but when I started to reflect on his questions I realized that I’ve done a lot more this past year than I give myself credit for.  And then I realized that his question was on ways that I’ve changed, not things that I’ve done.


This automatic switch is so characteristic of me: my brain goes immediately to valuing the things that I can see or hold in my hands rather than on any changes that I’ve made as a person, despite that being what I value most in others.  I’m still working on articulating why I think the latter is so important but in the meantime I wanted to reflect on my birthday: “how have I changed in the past year?”  I’m going to write about BN and AN (before narcolepsy diagnosis, after narcolepsy diagnosis) and will try to keep the two distinct.

Before Narcolepsy Diagnosis: How did I change between May 2016 and January 2017?

I went on a medical leave of absence from graduate school in August 2016 to recover from knee surgeries and a concussion sustained in an accident.  While on medical leave I prioritized the activities that I loved before graduate school but didn’t have time for, in addition to physical and occupational therapy.  I made space for art and writing, spending time with my grandma, trips to see dear friends, and important-to-me issues of social justice. It required me to be super intentional and to give myself lots of time to recharge and it was SO WORTH IT.


I let myself think about what it would mean to leave grad school after 5 years in my program – a big step for me since I became rabid about a PhD in Economics starting my first year in college – and what types of career paths I could take in life where I could be successful and that would make me look forward to waking up in the morning.  Because apparently the hallmark of a successful life is having a career that makes you look forward to waking up in the morning?  No pressure.  But all joking aside, this was a big one because I thought that if only I absolutely LOVED what I was doing I would be able to bounce out of bed and off to work.  I was really doubting myself and my abilities since I couldn’t think of anything that met that criteria.  I was in therapy – so.much.therapy – trying to figure out the root causes of my laziness, my lack of motivation, and why I couldn’t get out of bed no matter how impeccable my sleep hygiene and how many hours I’ve slept the night before.

There were so many frustrations but come January I was more self-assured in a lot of ways.  I came to be at peace with my varied interests, despite the one dimensional persona I was encouraged to cultivate in my graduate program, and I had an increased sense of self-worth.  Despite all of the work that I did, or perhaps because of the work that I did, I knew that something was still very wrong and that I would not be able to progress in graduate school at an adequate pace if I chose to return at this point.

The big change BN was my self-confidence and self-worth that let me hold a microscope up to decisions I made (e.g. grad school) and be open to taking a new path without blaming myself for past decisions and actions.  This was a big step for me.  All of the work that I did gave me the confidence in myself and in my ability to know that if I questioned grad school and ultimately left, I would find something that supported my physical and emotional health and provided a living*.

Now we’re in the period between BN and AN:

Sure I had changed in all sorts of positive ways but *I’m kind of just kidding about having any confidence in my ability to make a living.  I was struggling with anxiety, depression, motivation, sleepiness, and actually totally insecure about what type of job I would be able to find both with my skill set (math, statistics, economics) and with the flexibility to accommodate my anxiety, depression, lack of motivation, sleepiness…

Close friends and family said “you’re bright, you’re creative, why do you worry about being homeless? Your insecurity is exhausting me.” “Well, ahem, because what you can’t see is that I’m sick as shit.  I sleep all the time and the way I understand the economy is that people generally provide goods and services in exchange for a wage.  So unless I can demo bedding for the rest of my life, I’m screwed.”

My new found self-assuredness, combined with my ever-present focus and persistence, empowered me to get down with vulnerability, find a new doctor, and recommit to finding an answer.  (That was NOT before I started “flipping” clothes from Goodwill on eBay out of desperation for dollars. )

My new primary care physician gave me a holter monitor (a take-home EKG of sorts) to rule out my heart suddenly killing me and with the hope of catching one of my unexplained syncopal episodes.  I thought “this isn’t it, I’m going to fail this test and she’s going to write me off as crazy.”  Oh also she referred me to another doctor, a specialist.  I almost cancelled the appointment with the specialist out of fear of being admonished for my inability to get out of bed because of “depression”.  This was my fourth neurologist.  Another chance to be vulnerable.  I took it. And #jackpot.

One PSG and MSLT (fancy acronymns for “sleep study”) later and I was diagnosed with narcolepsy with cataplexy. I “passed” the test with flying colors. #success

After Narcolepsy Diagnosis: How have I changed since February 2017?

You guys all of this is so new and still settling.

  • I’m taking time to be me, and to slough off the layers of self-disdain that I built up as protection. Funny what we do to protect ourselves, isn’t it? The narcolepsy diagnosis gave me permission to stop beating myself up for “laziness”, “anxiety”, “depression”, “lack of motivation”, “etc.” Though I firmly believe that nobody should beat themselves up for those things even without a chronic illness diagnosis. More about that in a separate post.
  • I’m breathing.  For the first time in my life I actually have space.  Right now, I’m practicing claiming it: I’m allowed to be sleepy, and I’m allowed to take time to get healthy.
  • I’m taking time to be sad. So so so sad for the person inside me who was fighting to be seen. I’m letting her cry a ton. Im also giving her time to rebuild her trust with the medical profession. And yes I’m talking about myself in the third person.
  • I’m allowed to be proud of everything that I’ve accomplished up until this point. I fought tooth and nail -whatever that means – to be where I am.  I’m a warrior.  And one of the ways that I’ve changed in the last year is that I eagerly accept this label. #neverthelessshepersisted

  • I allow myself to be hopeful about my future for the first time maybe ever.
  • I listen to my body. I eat what I want. I nap before I become delirious. I snuggle with my bears.
  • I’m practicing being nicer to myself.  It’s going to take a long time for my inner critic to take a permanent hike but I’m working on this everyday. Some days are good, some days are ROUGH.  Like the day I heard this question for the first time. Which is why I’m encouraging myself to think about this.
  • And perhaps most significant of all is that I decided to open up about my disease and my struggles to family, friends, and finally the internet.  I’ve carried around suitcases filled with shame for 20 years and I’m putting those down now.  I won’t let them define me and they’re no longer mine to carry. #suckitnarcolepsy!

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How have you changed in the last year?  Are you good at giving yourself credit for all that you’ve accomplished?  I’d love to hear in the comments below!

New Orleans in photos

We went to New Orleans for our close friends’ wedding!  It was my first time and my husband’s second.  The weekend was full of adventures, time with friends, and so.much.food.  Y’all the food is AMAZING.  I highly recommend almost every place that we went; any exceptions are noted in the comments.

Day 1

Day 2

 

Day 3

The Ogden Museum of Southern Art

 

Day 3 Part 2

Day 4: Good Bye New Orleans! It’s been delicious!

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I can’t wait to go back and spend more time.  The city has so much going on and I’m eager to explore the museums and parks that we couldn’t make it to on this trip.  Where are your favorite places to go in New Orleans?  What should we make sure to catch next time?

She Looks Awake

I love museums.  I feel happier and safer in museums than almost anywhere else in the world besides my bed.

Me in my bed. Me at the National Gallery. I’m equally happy in both. Okay that’s a total lie, my bed always wins, but it’s pretty darn close.

So you can imagine my frustration when I got to the Ogden Museum of Southern Art on Sunday morning and I couldn’t read. As I walked the short distance from my Lyft to the lobby, I knew it was a bad day. I was a zombie. My head was cloudy, my eyes were burning, my sinuses felt congested, noises hurt my body, my hair hurt my head: all the things a person feels if they haven’t slept for 72 hours, except that I had.  As I focused on putting one foot in front of the other, I reminded myself that it was okay if the only thing I could do was stay standing. And if I couldn’t do that, then that’s okay too.


My intention was to learn, to be challenged, to be present. But the reality is that I’m not here. I’m not actually anywhere. I’m not awake, and I’m not asleep but rather in a purgatory dreamland that drains my energy before it’s ever restored.  Breathing is exhausting and as my shoulders fall slightly on the out-breath I fight to keep my whole self from falling to the floor.

I’m fit, an athlete, but narcolepsy doesn’t care.  My heart races, my breathing is shallow, and my legs burn after walking – slowly – up the museum stairs.

Before my diagnosis, days like this gave my abusive inner voice all the material it needed to eat away at my self esteem: the doctors say you’re perfectly healthy so why do you insist on making everything so damn difficult for yourself? You know how to read so stop being a lazy slug and just read!

The power of a diagnosis is that I finally have science on my side and my jiblets (the negative inner voices), as terrible as they are, seem to be persuaded by science. The results of my sleep study show that I am under the wrath of eternal sleep deprivation because my brain is 70,000 very-special-neurons short of having a regulated sleep/wake cycle.  My epic sleepiness, forgetfulness, klutziness, etc, stem from an insufficient amount of the neuropeptide orexin/hypocretin.  Boom.  Jiblets killed.

I fill my phone with photos of things I wish I could have learned at the museum but didn’t have the restorative sleep to comprehend and synthesize.

The museum is gorgeous and the pieces and subject matter are distinct from things I’ve seen at other galleries: race is a key theme, as is the unique southern landscape.  Or at least that’s what I can gather when I review the photos on my phone.  I find a book of letters from school children in NOLA to Trump following the election in the gift shop. The proceeds go towards a youth writing center so the purchase is a no-brainer.

I snap a few more shots before leaving the museum to meet my husband at the coffee shop where he’s working.  My college BFFLS text me – we’re in NOLA for our friend’s wedding – and they’re trying to get me to join them for brunch.  I want to want to go, I want to “seize the day” and “live life to the fullest” but when I get to the coffee shop and see the inviting surface of the table all bets are off.

Me 53 seconds after arriving at the coffee shop.  My husband was ridiculous while I was napping.  Twice he got in my face and made a noise similar to the one we make when we’re trying to get the bears to stop clawing at the couch.  And then he started playing the piano.  Alternatively, none of those things happened and I was tripping on an intrusive REM cycle.

I miss brunch with my girlfriends but a few of us meet up later on to wander around the Garden District.


On bad narcolepsy days like these, and sometimes weeks, I have no personality, aside from being a friendly shell. I don’t have the energy to express my opinions so that we can have an energetic exchange of ideas. You’ll think I’m a ditz. I might trip and fall (cataplexy) but I’ll giggle through it, pretending it’s okay. The best defense is a good offense and I’d rather own “personality-less ditz” before you can assign it to me.

If you could see past my puffy, sleep-deprived face and meet me beyond the purgatory dreamland that’s engulfed me as completely and as delicately as a spider web, you would find a woman who has lofty goals and ambitions, opinions and ideas, and yearns to not plan each day around horizontal surfaces. I stay hopeful that I can find my way back to “her” again tomorrow.  Hopeful that we can meet up to live the life that we have planned for ourselves and be challenged by things that are bigger than sleep.

Disclaimer: I take stimulants to “manage” my narcolepsy.  My symptoms are VERY different when I am unmedicated.  Please don’t self diagnose.  If you came here thinking that narcolepsy was your answer but you can’t relate to my story, that doesn’t mean a thing.  My symptoms might be different from yours. Or we might use different words to describe our reality. We might experience our symptoms in different ratios. Narcolepsy, and sleep disorders more broadly, are complex and misunderstood.  Speak to your doctor or a specialist about your concerns.