At War with My Body

At War with My Body

Thursday, November 4, 2021

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TW: chronic illness, infertility, weight

For a long time — since right after my spinal fusion surgery in seventh grade — I did not think of myself as a person with chronic pain. I thought everyone walked around in physical pain most of the time. It was only when I moved to Washington, D.C., after college that I learned that most people didn’t have the pain levels I had, that most people’s bodies didn’t hurt like mine did.

I hadn’t known. I thought it was normal. I knew mine was, perhaps, worse than others, but it never occurred to me that other people had no general pain.

I guess that’s because mine has simply always been there, & I’ve always just dealt with it — like the time my back hurt so badly for two weeks that I had to wear only sports bras & carry a wheeled suitcase to work… at age 23. But I’ve learned how to manage; I’ve always managed. You have to, don’t you? You only get one body, & so you do with it what can. You adapt. You figure out how to function best with what you’re given.

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My Life with Unmedicated Idiopathic Hypersomnia

My Life with Unmedicated Idiopathic Hypersomnia

Thursday, August 12, 2021

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In late 2018 & early 2019, I wrote a lot here about my experience seeking a diagnosis for my sleep issues – namely that I was sleeping all the time. I started seeing a neurologist, underwent a 24-hour sleep test, & was ultimately diagnosed with three sleep disorders & prescribed medication to help. I took that medication diligently & enthusiastically for a year. 

For various reasons, though, I've now been unmedicated for more than a year, & it's going... OK, I guess. Sometimes better than others. But some people have asked what happened with my sleep disorders after I stopped writing about them, & there's been some progress in terms of possible treatment for my primary disorder, so I figured it was time for an update.

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What's It Like to Have Idiopathic Hypersomnia? My Life with a Rare Sleep Disorder

What's It Like to Have Idiopathic Hypersomnia? My Life with a Rare Sleep Disorder

Friday, October 4, 2019

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It's been about 10 months - nearly an entire year - since I started medication to treat my idiopathic hypersomnia (IH), a neurological condition that causes my body to need/want more sleep than your average bear - literally, almost like a bear, all my brain wants to do is hibernate.

I now take medication every morning to try to control my condition - & truly, I have never felt better. Are things perfect? No, & I still follow up with my neurologists every two months to address ongoing concerns. But for the most part, things are better than they ever have been, awakeness-wise.

I started to put together a big, long Q&A answering questions about life with IH, but I realized I had more to say than fit into a single blog post. Instead, this post is going to be the start of a long series in which I answer those questions & break them down into smaller, more readable categories.

So today, let's talk about the general gist of idiopathic hypersomnia: what it is, what it does, & how it affects me, in particular. As they say, your mileage may vary.

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Let’s Get Physical, Physical: My Health Goals for the Remainder of 2019

Let’s Get Physical, Physical: My Health Goals for the Remainder of 2019

Wednesday, September 18, 2019

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Who says the start of the new year is the only time to set lofty, meaningful health and fitness goals? Not I. As 2019 begins to wind down (insert “time flies when you’re getting old” sentiment here), I’ve been thinking about a few of the health goals I’ve been pursuing this year – and what I want to work on in the next few months.

1. Wear my mouthguard every night, no exceptions.

I grind my teeth at night, & it’s negatively impacting my tooth enamel, which can become a huge problem if left untreated. For years, I’ve been wearing crappy CVS-brand mouthguards – the kind you have to boil in a pot of water & fit to your mouth yourself – but they get gunky & gummy real fast. Gross.

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Today is the Day I Wake Up

Today is the Day I Wake Up

Friday, January 11, 2019

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Yesterday was my follow-up appointment with my neurologist following the 24-hour sleep study I did last month. I'd been so worried about it - worried I didn't "pass," that my brain waves, or whatever it is that they study, wouldn't show what I have been struggling with for so long. I worried that nothing would change. I worried that I'd leave just the same as I'd entered.

"It's very clear-cut to me, based on these results," my neurologist told me. "I have no doubt about it. You have what we call idiopathic hypersomnia."

I have what he thought I had, but now it's official - now my brain waves say so, on paper, for sure.

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What It's Like to Do a 24-Hour Sleep Study

What It's Like to Do a 24-Hour Sleep Study

Wednesday, December 12, 2018

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It's done, it's done, my 24-hours sleep study is finally done! After being rescheduled twice, it finally took place on Sunday/Monday, & boy, am I glad to be done with it. I'd expected it to be like a sleep staycation, but to be honest, I've never been more bored.

If you missed the backstory, my doctor thinks I have two separate sleep disorders, delayed sleep phase disorder & idiopathic hypersomnia. I am not thrilled about either, but I am thrilled to be on the road to having answers & finding treatment. This sleep study was the first step. 

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It's OK to Admit: I'm Having a Hard Time

It's OK to Admit: I'm Having a Hard Time

Friday, November 9, 2018

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I haven't been doing all that great lately. 

It doesn't feel good to say, especially as someone who has struggled with mental illness in the past. I'm definitely not there right now, nor do I feel like I'm on the road to there - but I worry, you know? I worry that I could end up back there, no matter how hard I try not to, so whenever things start to shift in a downward direction, well... I get nervous.

First, I had two back-to-back busy weeks, filled with Harness rides, blogger events, freelance interviews, meetings with friends & colleagues, & more than a few late work nights. For the most part, they were all fun things, but for literally 14 days straight, I didn't have a single night to myself. I got through it by knowing that, soon, I'd have nothing but free time - that my busy weeks would come to an end & I could rest then.

Except then the Pittsburgh synagogue shooting happened. I work for a major Jewish organization, so not only was I personally devastated, I was suddenly, professionally, very busy. By now, given our past responses to global crises, I'm used to launching into go-mode when something awful happens - but given the specifics of this incident, it was incredibly difficult not to be able to take the time to process my own feelings.

When I was finally able to do so, I took a day off just to sleep - & no joke, some days I can sleep until 4pm. Horrifying, right? I haven't had my sleep study yet because of a scheduling error (the hospital's fault, not mine); in the meantime, I feel like my sleep disorders are getting worse, if that's possible. I sleep way too much, & sometimes I can hardly function during the workday. I have to leave the house just to convince my body to stay awake, & even then, it barely works.

I'm also struggling with money. I'm dealing with medical bills that haven't even reached full capacity (hello, upcoming sleep study), & I freelanced so much this year that I'm my taxes will likely wipe out a massive chunk of my savings. I'm trying to make better everyday choices, but I continue to never get it quite right. I recently read The Financial Diet, which inspired me but also made me feel worse; how am I 34 & still sucking at all this?Am I ever going to get this right?

In the vein of feeling bad about myself, I'm the biggest/heaviest I've ever been, despite the fact that I've been working out more - & more consistently - than ever before in my life. COME ON, body.I know, in theory, that I'll only see actual results if I start eating better & probably doing some sort of cross-training, but, well, it just feels bad. And it feels incredibly discouraging, which makes me not want to ride anymore, which is absolutely not the right decision.

Oh, & my house is a mess, too. Mike & I rent a duplex, in part because we know we wouldn't be able to keep up, right now, with owning a whole house - but that makes me feel kind of inept sometimes. The floors are always dirty, the sink is always full, & I've always got four loads of laundry do. A clean home brings me mental peace when everything else is crazed, but I can't ever seem to get to the place clean. (And I'd hire cleaners again, except for that whole money business!)

God, this doesn't even touch on the politics of the world right now & how all of that feels... I can't even begin to get into that.

In other words, things have been feeling kind of tough lately. I'm having a hard time, even though I know it won't be forever. I know I am fortunate & privileged & overall, doing just fine, but I've been feeling, well, off. I feel sad & discouraged & overwhelmed & tired & just never good enough. I want to be better than I am at... well, at everything, really. At time management, at self-care, at health, at cleanliness, at finances, at cooking, at... the list goes on.

OK, I'm getting carried away. I am, all things considered, a perfectly good & high-functioning adult - but sometimes it's difficult to give myself that credit, especially when I see so many ways I could be doing better. Right now, I'm just I'm trying my hardest not to retreat into a sad winter hole, a.k.a. my bed.

How do you make it through the downswings? What do you do when you're feeling bad about yourself &... you know, everything else?

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Let's Talk about My Sleep Disorder

Let's Talk about My Sleep Disorder

Friday, September 14, 2018

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I am 16 years old, & I fall asleep in the shower before school nearly every day. My show choir loads onto a bus for a 15-hour ride from my Ohio hometown to Florida before a cruise to the Bahamas; I sleep the entire way, waking up only at rest stops when prompted.

I am 18 years old & a freshman at Ohio University, a three-hour drive from my home. Every time I make the trip home, I have to stop to take a quick nap in my car, usually in a remote corner of a rest stop or, preferably, in the parking lot of someplace safe, like a church. My "drive" takes a total of four hours, nearly every time.

I am 20 years old & living in a sorority house with the immediate past president, a friend from high school, who wakes up around 6am every day to go for a run; her alarms never wake me up. Her primary complaint about living with me is that I sleep too much. I do.

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My Nighttime Routine: Do You Have One?

My Nighttime Routine: Do You Have One?

Wednesday, August 22, 2018

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I feel like morning people are always talking about their "morning routines," mostly because a lot of morning people are like vegans: You will know them by how much they talk about their habits. (Sorry, morning people & vegans. I still love you... & kinda wish I were like you.)

As decidedly not a morning person (stay tuned for an upcoming blog post about my recent sleep disorder diagnosis), I've thought a lot about the morning routine I'd like to have, if mornings were my jam. As it is, I basically just roll out of bed, eat a granola bar at my desk, & change out of my pajamas by 11am.

What I do have is a much more established nighttime routine. While it's nothing special, I've found that I feel more prepared & therefore sleep better when I go through this routine before crawling into bed.

1. Pick up the apartment.

I don't do as much of this as I ought to, but before I head to bed or begin the rest of my nighttime routine, I do a little bit of picking up around the house. One of our cats leave balls of socks everywhere; my husband is prone to leaving beer bottles & books all over the place. I certainly don't do any deep-cleaning most nights, but putting away some of the smaller items of clutter gives me some peace of mind before bed.

2. Take care of the cats.

You probably already know (especially based on the fact that they have their own Instagram account) that I lovelovelove our fluffs, Helo & Dora. They get fed at night, plus a bowl of clean water, & I spend some time scooping out the litterboxes, too. Helo has been known to poop in the bathtub if the litterbox is anything less than pristine, so I try to appease his majesty before I call it a night. Bonus: The more I engage with them before bed, the more likely they are to cuddle with me in bed.

3. Take my medicine.

I used to be the kind of person who couldn't remember to take anything, which is why I've never been on oral birth control (TMI? You'll live). Now, though, I take at least three pills every night: Zantac for acid reflux, Singulair for asthma, & Lexapro for anxiety. Per a recent visit to a pulmonologist, I also take two puffs of an inhaler designed to help better control my asthma. I have to rinse out my mouth after using it so I don't get oral thrush, a goddamn yeast infection of the mouth. How gross is that?

4. Wash my face.

I remove my makeup with Neutrogena makeup wipes, which I've been using for more than a decade now. They're the best I've yet found! For a long time, they were my only means of washing my face outside of showering, but now I also use Glossier's Milky Jelly Cleanser, a birthday gift from a friend. Ut's a weird consistency and has a weird smell, but it leaves my face feeling so fresh that I am willing to overlook any & all weirdness.

5. Apply my potions.

Once my face is clean, I apply plain, pure argan oil to my skin. It sounds counterintuitive to put oil on an already-oily part of your face, I know, but since I started using it (at the recommendation of my mom's coworker, no less), my skin has never been better. I let the argan oil sink in while I brush my teeth & braid my hair (for morning waves), then I apply Jane Iredale moisturizer, which smells like lemongrass, sinks in quickly. & feels fresh & light enough for overnight use.

6. Turn on the air purifier.

Mike bought an air purifier a few months ago because we were both struggling with ongoing allergies. It's made such  a difference! I can breathe better (probably also helped along by the new inhaler, I know), & the white noise it creates helps me sleep better, too. We sometimes leave it on during the day, especially because I work from home, but I always make sure it's on overnight.

7. Set my alarm(s)... across the room.

I used to sleep with my phone nearby, but I'm prone to sleeping through my morning alarm, & I also wanted to follow all those best practices tips doctors share about "sleep hygiene" (like, you know, not sleeping with your cell phone). My dear iPhone X now resides on the other side of the room overnight so that I'm at least slightly less likely to turn off the alarms in my sleep - & yes, I set multiple alarms. Like, nine or 10 of them.

8. Get cozy. 

I'm perhaps weirdly particular about the setup & placement of my bedding. I like lots & lots of blankets, including but not limited to a top-sheet (remember all my top-sheet feelings?), a duvet, & a comforter, plus sometimes a few other blankets thrown on top. I like them to very nice & even, like I'm sleeping beneath a bed that's been newly made, so before I go to sleep, I organize everything just the way I like it - on my side of the bed, at least. Mike has no bed-related rules or scruples!

9. Read. 

I don't always read before bed, but it's my favorite time to get in a few pages & to give my eyes a post-screen rest before I fall asleep. I bought a book light so that I can get my read on even while Mike is asleep beside me, & I also sometimes read on my Kindle to help me keep track of my bedtime (especially with my phone all the way across the room!)

What's your nighttime routine - or, for that matter, your morning routine? Are you a morning person or a night owl? 

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All I Do is Sleep, Sleep, Sleep No Matter What

All I Do is Sleep, Sleep, Sleep No Matter What

Monday, January 8, 2018

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About a year & a half ago, I started having a sleep problem I'd never had before: I couldn't fall asleep for most of the night, & by the time I finally slept well, it was 5 or 6 in the morning. It was like I didn't hit REM sleep until morning - & as a result, I overslept on an everyday basis.
Now, I'm sleeping better during the night - but back to having the same problem I've always had.

I've had trouble sleeping for as long as I can remember - namely, the trouble is that I sleep way too much. Literally, this was the primary complaint of not one but two of my college roommates. Back then, I went to the student health clinic at least once per year to be tested for mono - which I never had. I was just tired all. the. time.

The same is still true today.

Over winter "break" (I don't have one, I just took a few vacation days), I could not get out of bed. I set alarms but slept through all of them. Left to my own devices, one day I woke up at 2pm - at 33 years old! I slept past noon every day. I was perpetually exhausted. I could not get my body moving. 

One of my biggest goals for 2018 is to get my sleep schedule under control - including probably going back to the doctor to get some testing done, maybe a sleep study. It's time to do the damn thing.

For now, here's what I'm trying:
   

Drinking soothing tea before bed. 

After my aunt first introduced me Celestial Seasoning's Bengal Tea, a caffeine-free tea flavor, over Thanksgiving weekend, I immediately ordered a six-pack. It tastes a little bit like chai but much more flavorful, with robust flavors of cinnamon, ginger, cardamom, & cloves. I don't even put honey in it.

Taking magnesium.

Magnesium supplements have been shown to treat insomnia by decreasing cortisol & relaxing the muscles. It's not like taking melatonin, which actively helps you fall asleep - which I definitely don't need right now. I just need a better quality of sleep so I don't oversleep! Does magnesium work? I don't know, but it can't hurt, right?

Going to bed early-ish.

Duh, I know - but this has always been a difficult one for me. I've been trying to just do less so that when the time comes for me to go to bed, I actually go to bed. I often stay up late working, in part because I start my workday late - but if I can start my workday at a normal time, I can stop working at a normal time, too...

Putting my phone across the room.

I use my phone as an alarm clock, which I regularly sleep right through. I've started plugging my phone in for the night on the other side of the room, which has the added benefit of making sure I don't check it when I wake up in the middle of the night to use the bathroom. 

Applying soothing face oil. 

I'm partial to Moonlit Skincare's Midnight Shift Overnight Facial Oil, made of jojoba & sunflower oil to moisturize & hydrate overnight. More importantly, it smells like lavender, so when you press it onto your face & neck, it releases an incredibly relaxing scent.

Using a "calm balm."

I first received this Calm Balm from Lesley Saligoe Botanicals in a Bloom Beautifully box about a year ago, & I use it nearly every night. You put a little in your palm, rub your hands to warm it up, then inhale deeply. It's scented of lavender & ylang ylang & soothes me within one breath.

Listening to a white noise app.

We got an Amazon Echo as a wedding gift, & while we're still trying to work out the kinks, right now I primarily use it as a white noise machine when I sleep (using sounds from Voice Apps LLC). It helps soften the harsh silence & drowns out the more-than-occasional sounds of Mike's snoring.

Sleeping with an eye mask/headphones hybrid. 

I listen to said white noise through my new sleep headphones, which I received as a Christmas gift from Mike. This soft, secure eye mask plugs into the Amazon Echo & pipes sleep sounds right into my ears to help lull me to sleep. I've been falling asleep faster than ever.

All of this is to say that I'm trying... but it's not necessarily working (yet). I'm going to keep at it - especially the getting-to-sleep-early thing - & see my doctor about it again, if I need to. If you have any tips - or have had any weird sleep issues yourself - I'd love to hear what has worked for you. 

Thanks to Moonlit Skincare for providing me with free product many months ago in exchange for my honest opinions. As always, all views are my own. 

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